Archives

Learning to Lean on Yourself

IMG_0214_Fotor

“This the core of spiritual work. When you are comfortable with pain passing through you, you will be free. This world will never be able to bother you again because the worst the world can do is hit the pain stored within you. If you are no longer afraid of yourself, you are free. You will then be able to walk through this world more vibrant and alive than ever before….Eventually you will understand that there is an ocean of love behind all of this fear and pain…peace and love will run your life.” ~ Michael Singer

Learning to Lean on Yourself

One of the greatest gifts to come out of suffering a serious condition and severe, if not terminal, illness is that you at last become your own best friend. Perhaps this is divine intervention, or perhaps it evolves out of necessity because, as explained here, friends tend to fall away whenever a person changes, particularly in foreign ways such as these. However, brain injury also leaves survivors reevaluating all their relationships, so sometimes the survivor is the one choosing to move on from a friendship, which is another interesting evolution of the condition.

bi friends

Following are some of the changes that I experienced that allowed me to become my own best friend. My hope is that if you struggle with this issue (as I did before my injury), whether or not you are suffering a chronic condition now, you will find some wisdom in these ideas.

 1. Forgive Yourself.  You’re going to be a whole new person, radically changed by your experience.  The only way to calibrate the rate of change is to hold on for the ride. This requires vigilant forgiveness, not of others because remember–you’re trying to survive something life threatening–your focus naturally falls on yourself during this time. You have reached a point where you simply cannot take care of anyone else, but you must take care of yourself. You are going to think and feel and do some out of character things that may surprise even you, let alone leave everyone else shrieking. It’s part of the process. Embrace it, but to the best of your ability do not overindulge it. When you do feel disappointed in yourself, understand that you’ve been wounded, and that healing isn’t always pretty. This perspective shows you how beautiful a mind is, that it is adaptable and that it can improve. Forgive every foolish thing you say, do, think, have and will say, do and think. There is no tax on self-forgiveness. Practice it daily.

2. Find Your Value.  Nothing can prepare you for the feeling of worthlessness that brain injury induces. It’s like you’re on one of those carnival rides where centrifugal force makes the floor drop out from under your feet. Just as you work on this ride to feel grounded, like you aren’t falling into some vast abyss, you have to work to find your worth again. It’s likely that you will be reduced to feeling that the only thing you have accomplished is surviving…and for a long while, that’s not going to feel like a victory–more like something you didn’t have a choice in much like you may not have had a choice in being injured. Even if the only thing you can proclaim is that you are human having a human experience, that is enough. In fact, that is a lot. You have value because you are. Simply because you exist…but also because you endured. Your body and brain are among the strongest, depending on the extent of your injuries, and that in itself is remarkable. As unlucky as you may feel, you are actually quite lucky.

3. Practice Acceptance.  This is probably the toughest step on your way to becoming your own best friend, but perhaps the most essential one. You don’t have time to whine or be angry about what you’ve lost, even though it is okay to feel this and act this way (and you will). Your energy, however, is best used accepting who you’ve become and whether you have sufficient help and love or not. Chances are you won’t, so this is how you begin to become adept at providing your needs for yourself. Also, you get to give up the hope of being “perfect” and the drive toward perfection. You finally get to let your hair down and just be whatever state you’re in. No sense fighting this, because you won’t have the strength, at least for a good while. Use your time to find new ways to occupy your time. Change the way you think about what you need to be doing and what you want to be doing. I was amazed at how alive I was even just lying in my bed not speaking to anyone. You can learn to be totally isolated and still sane. And once you learn that, becoming your own best friend is relatively easy. Your thought patterns are crucial, so if those are dreadful, work on changing those, or know that they will change as your body and your brain heal…even if your circumstances remain the same.

4.  Express Yourself.  You do this for you, because most people aren’t going to be interested or tolerant. Most people do not want to hear about your trauma, your ailments, your challenges, your problems. Life is tough for everyone, even the healthiest. However, the catharsis of self-expression moves you forward in magical ways. It does not make you popular. Remember, though, to have a friend you only need one–in this case, you! If you can find an art form, play or listen to music, design or decorate anything, write…you get a bonus. Let the rough patches out to smooth them; let the fear out to overcome it, the confusion out to clarify it. Be gentle, be patient, but allow yourself to try. Even if you have to talk to yourself in your head, you are working that brain, and any working brain is an alive one. Keep expressing yourself, even if you have no audience. Especially if you have no audience.

5. Know You.  Be skeptical of anything anyone tells you about who you are. The fact is, unless the person has experienced and survived intense head trauma, they really do not know you. You know you. Your knowledge is sufficient. To bolster what you do not understand, you can read–but know that reading takes the form of actually reading text as well as watching and listening. Reading becomes a fuller, richer, more varied activity. When someone judges or scolds you, know that what they say may or may not be accurate. You get to decide. You become selfish because you don’t ever have to worry about becoming self-centered. You just have to endure. You’re trying to get your life back. People scratch their heads, but you were there whenever your injury occurred. You experience the knitting back together of your own bones. No one knows your body or mind like you do, and you are free to stop worrying about theirs. For a while, you get a PhD in who you are. So pay attention, and let this distract you from all the drudgery you have to endure.

blue spot6.  Know Your Limits.  People may tell you that you expect too much or you do too little. People will tell you all sorts of things. You just have to concentrate on what you can do and when. If you can’t do something you want to do, accept it and don’t try to force yourself. When you are ready, you will do whatever needs to be done. If you can’t cook dinner, or even if you don’t want to, you get a pass. Your family members might not give you a pass–you have to give it to yourself. When it comes to activity, who doesn’t want to be up and at it? No one would choose to check out and be a blob. Even people who might do that are fighting some sort of challenge. When you need rest, rest. When you want to run a marathon, consider whether you can. Sure, you can try anyway, but don’t beat yourself up when you run last. You are okay just where you are. When you weren’t injured, you were better. When you heal, you are not going to be the same as you were before being injured, but you will in some ways be even better!

7. Defend Yourself.  People are not going to like you for this, but you are going to have to be strong enough to stand up to them. Head injuries help with this, because you can get really good at giving someone a piece of your mind. You’ve already lost a few million brain cells and survived, so what’s a few more, right? Don’t let someone break your heart without acknowledging it at least to yourself. If you can, stand up to them while they’re doing it. If someone says, “You never come out with us,” just say, “I’m sorry, I haven’t been feeling well.” If someone says, “You are a purple people monster eater,” say, “No, I am not. I am a person. I have a heart.” People are eager to pick on brain injured survivors, don’t be bullied.  You didn’t hit yourself in the head, and your karma didn’t make you get hit in the head. Maybe it was someone’s voodoo doll that got you hit in the head. The point is, you have to take a defensive stance because you now know that there is a bulldozer and it is coming for you. You might not have been able to avoid your injury, but you don’t have to be bulldozed for the rest of your life because of it.

8. Do What You Love.  Nothing says mortality like almost losing your life. Learn the lesson that life is short, and then use your time on this earth to do what you can for yourself by doing what you want. I spent my entire life trying to help others; I still do that to a fault now. Help yourself by doing what you love to do. If you like to bowl, bowl. If you like to write, write. If you can hang curtains, do that. Do what you’re good at and what makes you smile, makes your heart beat. Be alive even if it is in a small, quiet way. You don’t have to be the provost, CEO, and leading lady. You just have to be happy…and you will be surprised at how little it takes to live happily.

 9. Be Kind to Yourself. Let the rest of the world ignore you if they choose. Practice self-kindness, self-acceptance. Focus inward instead of outward. No plans for Saturday night? What can you do on your own that will make you happy? No likes on Facebook? Be the bigger person and like someone else’s post…but try to like it only if you like it, because it is never kind to lie to yourself. Don’t worry about your image or how many followers you have. Quite frankly, that is a pain in the butt. We are not all trying to get elected. You can earn a living without a social media presence or even being part of the in group. You just need to monitor your self-talk, and to correct it when you are being harsh to yourself. Everything else will take care of itself. You will be loved again. You get there by being loving.  In the past, I mastered loving others but always put myself second or even last. Then I got hurt and no one understood me and no one could help me, not fully anyway. I had no choice but to learn to pay attention to what I needed. If I didn’t pay attention, I didn’t get what I needed. You don’t have to worry about not being hard enough on yourself. Most of us are way too hard on ourselves.

10. You Decide. Since it is so important to know yourself and to do for yourself, I leave this last one to you. What do you need to be your own best friend?

being honest friends

Becoming your own best friend is important because it brings you fulfillment you cannot experience without it. It enables you to provide for yourself what others cannot or will not, and thereby reduces your anger and helps your heart health. Once you learn to provide what you need, to truly care for yourself (even if that means hiring a caretaker), to like yourself just as you are, you can live through the worst calamity you’ll ever experience. Once you learn to rely on yourself, you do not have to fear death. You have walked the labyrinth in solitude, and you are now free to fall in love with life, with your own life, however little or big it is to you or to anyone else. Once you learn to lean on yourself, you’ll be a more reliable place for anyone else to fall, because you will be solid and true.

Remember it’s not how many fans you have, it’s how many smiles you can smile.

________

Thanks for reading Stumbler.

This is Day 29 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

When Stress Amplifies Fatigue

When Stress Amplifies Fatigue: 10 Things You Can Do 

Like many ailments that arise through no fault of the individuals who suffer them, stress is often compounded by forces outside one’s control. Every injured or disabled person knows to make accommodations to help them cope and to help them recover as much as possible, but sometimes even the best strategies cannot protect us from the agitation delivered by other people and circumstances.  So, what can a person who is already struggling with health issues do when additional stress arrives?  Here are ten things that work for me:

 1. Rest:  Many problems lessen with a level blood pressure and clear thinking.  Even a crabby mood can be indicative of being tired, so make sure that you take to the hammock if anything is causing increased stress. By checking out and calming down, you will renew and strengthen whatever cells your going to need to face whatever music is playing all around you. Of course, I’m speaking metaphorically.  Just rest, as often as possible, particularly if tough times get tougher for any reason whatsoever. You don’t have to hibernate as if rest is all there is. You just need not to forget that rest does help whenever we feel overwhelmed.

 2. Educate Yourself:  While you unwind, pick up a book or an article having to do with whatever you are facing. The more you understand about your condition and the more you learn about whatever challenges crop up, the more you will be able to make sound decisions and seek useful assistance, should you need any. Or, read something unrelated, say a poem or a short story. Try to keep the reading nourishing, not anxiety producing in any way–you are reading to return to center, not to aggravate yourself further.

 3. Eat Healthy Foods/Drink Plenty of Water:  Your body cannot repair itself if you fill it with low quality fuel.  The better the nourishment, the better you’ll feel and the stronger you’ll get.  Last year I drank warm lemon water every morning all winter. I never got a cold until May, despite my husband having a cough nearly all season long. Later this year, I added one apple a day to my diet.  I was amazed at how filling this was, how satisfying (eat fresh ones, obviously) and how it helped me cut down on snacking.  Don’t even get me started on salads–I am a salad fanatic; I like them as much as candy, and make them so that they are actually better than candy (not sweet, just yummy, fresh and healthy).  I also added to my diet red grapefruit, chilled to perfection. This is a satisfying treat whenever I’m feeling dehydrated, which is often, no matter how much water I drink. As for water, I fill a glass every time I empty one, and basically drink water all day long. Yes, this results in many potty breaks, but it also helps me think clearer and have more energy. Did you know that before an exam you should drink water to make sure your braincells are hydrated?  This was a trick I used as a student, and one I passed along to my students. It makes for clearer concentration stretched over a longer period of time.

 4. Change the Air:  When stress erupts, so does anxiety.  The best thing to do for anxiety beside rest is to vent by talking, go for a walk to get your blood flowing and muscles moving, write to release what is inside, or just open a window to let in a breeze or some sunshine. If noise bothers you, turn things off or close the windows (I even got myself earplugs, and I take them with when we travel); if silence drives you crazy, put on some soothing music or even a tv show. Small adaptations make big changes. You do not have to go stir crazy in the atmosphere that stress induces. Do whatever little thing you can to enable yourself to clear your mind. Of course, exercise, meditation, shopping, calling a friend, or a trip to the library work well, too.

 5. Give Yourself a Mantra for the Day:  To combat the negative feelings I have that have basically been imposed on me by negative people and negative situations, I try to bolster my wounded self-esteem by creating a mantra to help me focus on the sort of inspiration I feel lacking.  I might say, “I am generous, thoughtful and good,” or “I am strong, honest and true,” to combat anyone doubting my motives.  Or, “It doesn’t have to be done. Reading is doing,” or “I can rest when I need to” on a day when fatigue has me in its grasp and I cannot hardly sit up, let alone tackle the universe. If someone throws a brain injury insult my way, such as, “You’re crazy,” or “I told you, but you forgot as usual,” I tell myself, “I understand my journey better than anyone. I know where I have been,” to center myself in the fuller truth.  People like to judge one another unfairly, so write down inspirational statements to yourself and keep them at the ready for whenever you start to feel lost or unloved.

 6. “Have a Dance Party” /or/ Have a Pop-Tart Party!:  I say this in quotations because you get to decide what having a dance party entails.  It may be just you, it may be yourself and others, it may be you and your cat, dog or turtle. Thepiano music is all up to you. The only requirement is that you include music. I cannot hear upbeat music without picking up the beat in my head, body, fingers, limbs. Find a go-to song that will get you going whenever you know this will work. My pick is “Brown Eyed Girl” by Van Morrison. I just can’t hear that song without reverting back to the 16 year old I was when it was popular. It brings back memories of many dances and always gets me hopping.  Likewise, when I am grief-stricken, I have a favorite CD I always play that soothes me. I rarely share it with others because music is such a personal choice, but it’s by a pianist who writes instrumentals for movies.  His name is Dustin O’Halloran, and I first heard him playing back up for K.D. Lang in Nashville, TN. Here is my favorite album of his, which you can find online and listen to on Soundcloud or wherever.  I have enjoyed this CD so many times, usually while trying to fall asleep, or when home alone, recovering.

A note about the dance party:  Many years ago I knew a woman who had a young son with special needs. His speech was clear, but he had some emotional challenges resulting from brain damage at birth.  One day the boy became frustrated, as he frequently did. Since he was learning to try to work through his anger, he tried to calm himself down, saying to his mother through his tears, “Could we have a pop-tart party?”  The boy wasn’t a big eater, but pop-tarts made him happy.  So, whether you like pop-tarts or not, you can also think of this one as “Have a Pop-Tart Party!”

 7. Put On the Blinders, Put Up the Schmuck Shield:  Since a lot of stress comes from other people’s behavior, you have to become adept at not looking and not listening. It’s not all that easy to ignore hateful, rude, petty, or otherwise annoying and hurtful people–but the more you can, the better you’ll feel.  EVEN IF you falter and take the bait when they are with you, and EVEN IF you do or say something you regret (we know how easily provoked anyone is who isn’t feeling well in the first place) just do your best to let it all go as soon as you can. If you are embroiled in the moment–being unfairly accused or criticized–you have to do your best to follow the words to the source and let them remain there. None of us can do a thing about what others say or think about us. Even if we try to, they will just go ahead and say and think whatever they want once they are out of our influence, anyway. Some people even thrive on this sort of behavior. So, know this and let them have their opinions. Of course this behavior is likely to be hurtful, that’s partly why they may be doing or saying it in the first place–to bring you down and to elevate themselves. OR, they are doing it to release some of their own intense anger or frustration–in which case, you can begin to have compassion. Most of the time, however, you cannot help people with their anger. You are too busy trying to cope with your own. So when someone comes at you with the Schmuck Truck, do what you can to make things better if there is anything that you can do…but mostly, just practice being deaf, dumb and immune–put up the Schmuck Shield, by envisioning a thick impermeable plastic shield that nothing can cross. I’m not all that good at this myself, but I want to be. So, I’m telling you what I tell myself.  And I hope one of us listens.

 8. Extreme Self-Care:  Whenever you are stressed, it will help you to do whatever you need to treat yourself the way you wish others treated you. Create a list of go-to things for whenever you need a way to care for or comfort yourself. Include things such as: floss my teeth, clean my dresser, color, make a craft, go to a bakery, take a walk, buy flowers or plant some, watch a baby babble, sign up for a course.  Virtually any small thing or big that will make you feel taken care of.  If you have not tried this, I can practically guarantee that you will be amazed by what it does for your spirits. My favorite self-care story is about a time that I was so ill I hardly could get out of bed…but I was home alone and freezing cold. I lay in bed for what seemed like hours, shivering and so uncomfortably cold. It finally occurred to me that I could get out of bed gently and actually get myself a pair of socks. When I put on the socks I took from my dresser drawer, I felt an instant comfort like I had never quite known previously. It was as if I had finally learned to take care of myself the way I would care for others! I warmed up and finally fell asleep.  To this day, that small act is one of my happiest memories of the smallest of blessings that made things feel so much better.

 9. Find Your Happy:  The best thing you can do when you are stressed is find a way to experience joy.  I wrote about this, for example, both here and here.  In addition, you can write a thank you note or read one you received, create a collage or just flip through photos in a magazine or even in your photo file.  The sky is the limit with this one. Facebook is full of groups with challenges that also work toward this goal, so you can do it online or just in your home. You can also do some brainstorming to unveil where your interests lie–try creating a bucket list, a vacation list, a set of goals, a series of fun to-dos, or even add to the list, “read The Artist’s Way,” because it is a book that will set habits of taking Artist Dates and other fulfilling adventures that will enrich your life in remarkable ways. The key here is to gift yourself with anything that brings you joy, the smaller the better, until it becomes second nature. No worries about over-indulgence, this is a strategy for when you are hurting and need to feel some relief from pain.

10. Show Love:  This category also takes whatever form you wish.  The purpose is to show your love or share your heart to anyone you see fit.  You can write a love note, send a text message or, one of my personal favorites, create a package. Sometimes, just finding a sticker or small package of something that reminds you of someone is all it takes. One time, my daughter said she was so busy she’d become short on makeup, so I sent her a shoebox full of new makeup–nothing too costly, just some things I knew she could use. It made her feel loved, and it got me in touch with my love (even though mean people were trying to make me feel awful.)  In one of my online groups, we’ve started sending feathers to one another. Because it is a social media group, we each have a growing bundle of feathers from across the oceans. We find the feathers outside on the ground (so, they themselves are free), save them, then send them when the spirit moves.  Remember, it doesn’t take much to show someone you have thought of them. Plus, whatever time you spend will be a gift to yourself as well.  One of my favorite things to do is to send a book or a card to our granddaughters, the baby especially. Here she is one recent morning, receiving the Halloween card discovered by her parents in the mailbox late the day before. She still has her rag baby with her as she sleepily examines the envelope. It’s one of my favorite photos, and brings me joy every time I look at it:

photo 2

Similarly, one day I sent our granddaughter a short video of myself and my husband just saying hello, telling her we love her and miss her. Thanks to the remarkable technology of cell phones, her father sent one in return, of just her trying to say the same things to us. I cannot tell you the number of times I have watched that video. She’s not quite sure what’s happening, but predictably gets the “bye bye” part down really well.  It adorable, and it’s a grandparent’s dream.

I hope this post helps you find new ways to cope with stress.

Which of these strategies will you try?  Please leave me a note in the comments and let me know if it worked for you!

Feeling sluggish or blue, frustrated or hurt?  Dance it up with me:

https://youtu.be/UfmkgQRmmeE

If you want to follow Stumbler on Facebook, you can do so HERE.

Share the Love!  You are invited to share this or any Stumbler posts.

Thank you for reading Stumbler!

__________

This is Day 27 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

Living the Wrong Dream

Living the Wrong Dream:  On Brain Injury, Thought and Dreaming

One of the most surprising things about my head injury was that as tired as I felt, I rarely slept.  In fact, I often lay for hours on end in excruciating pain, awake though exhausted.  Being unable to sleep was nearly maddening, but what I recall most vividly was how my mind never shut off.  Sometimes, the only way I knew that I was still alive was by the thinking that was non-stop in my brain.  Even when I could not so much as move my hand, my brain was firing, less in the very beginning, but often times early on, seeming to be as active as it had been before being injured. Not as happy or as focused, of course, but still active, in motion.

Experiencing the physical pain of my skull trying to fuse, my meninges trying to repair itself, the tissues and cells of my neck and spinal column fighting to regenerate–open up–unswell, my nose a constant mass of smashed to pieces, all so overwhelmingly painful that I used to try to do everything I could not to experience any or the whole of it–not to pay attention to these areas or my condition–even though the pain was so intense, so chronically grabbing me, pulling me often times into a raw panic…rushing the best I could without falling to the window for air, the bathtub for hydrotherapy…and then back to my bed, a womb or coffin of sorts, clinging to the mattress where unexpected muscle atrophy would follow, along with the fibromyalgia it caused, things I’d never experienced before…not to mention the emotional changes and the trauma, the post traumatic stress that arrived to plague me further.  No exercise, and a body growing increasingly weak, rigid.  Once this all ended years down the road, I wondered if this hadn’t been the true root of my subsequent fatigue: so many years of fighting the beast that was post-concussive syndrome, of my brain fighting to right itself and my body.

To get through those long days and nights, I would lie in bed otherwise helpless, often limp, sometimes restless, and I would try to follow my thoughts. I entertained myself, if you can call it entertaining, by paying attention to what my brain was doing, what my mind was thinking. I marveled at the fact that my brain still seemed to be working, in its way, anyway.  I didn’t know if I was going to live or die, but it felt like dying while I was not opposed to living.  A notable but sort of checked out, indifferent state. My life became an observation.

No matter how weak or how ill I felt, ideas never stopped arriving, rolling and tumbling through my swollen, bleeding, traumatized brain.  This continual thinking rather amazed me–like a lifelong battery that never lost its charge even though the radio case was broken.  Yet, at the same time the act of thinking seemed unsurprising.  After all, this was how I knew myself.  I had had such an active mind that without it I really would not recognize anything in me.  I wouldn’t have had anything to connect to, since I could scarcely see my face and rarely bothered to look in a mirror, if ever (it took me seven months to see that my teeth had been cracked and chipped).

Creative thinking was possibly the only way I knew that I was still me.  Lying in bed like a carcass, because my brain was somehow familiar, somehow kept thinking, at least I felt connected to myself.  Off work, I thought often about my children, about my parents, my husband, my dog who was always by my side and who I let up on the bed whenever my husband was at work.  All the past was on hold, as was the present and the future.  There was no time really, only love…love, confusion, and fear.

While I had seizures, the thinking subsided, seemingly stopped.  Those were scary times, but frequent and surreal.  Eventually, the seizures stopped, nearly as unnoticed as they had arrived.  I would proclaim to my husband, “HEY, I didn’t have any seizures today!  Did you notice that?  Did you see that?  WOW, no tremors! WOW, no spasms!  WOW, I’m not staring into space!”  Seizures always frightened me, but my husband took them in stride.  We rarely discussed them, just waited for them to pass.

Sleep during my head injury was rare and tortured, and it seemed that dreams had all but stopped.  I missed dreaming nearly as much as I missed sleeping.  I remember several years into my recovery (perhaps four) shrieking, “I had a dream!  I had a dream,” feeling like I was just given water after a long dehydration.  Then the doctor put me on some kind of medicine; I was never good about taking any of my prescriptions–couldn’t remember to take them, couldn’t generate the effort to swallow them or to get myself water, and I just plain didn’t like putting chemicals into my body, a little afraid to actually.  One you have been so hurt physically, you want to avoid all possibility of any further damage. It’s ironic, I know, since the medicine is meant to help.  Still, one medication (was it Lyrica for the fibromyalgia?  Was it Ambien to help me sleep?) made me dream vividly.  It was a kind of heaven–not because the dreams were necessarily idyllic, not because I could articulate them (I generally couldn’t), but just because the act of dreaming had returned when so much else had been stripped away from me.

I have always been interested in dreams.  So much so that I once took a graduate course in the study of dreams.  After a semester of study and reading about five or six books on the subject, I concluded that the most plausible dream theories examine how dreams make us feel.  In other words, it isn’t so important what dream symbols stand for as it is to consider what we experience during the dream, what we feel in terms of emotion–the dream being expressly connected to the dreamer. The theory being that emotions that we suppress during daytime experiences emerge in dreams so that our psyches can work out what we tend to withhold.  Because we don’t want to or can’t act barbarian in daily life (with pressures to behave in dignified and controlled ways at the office, to be pleasant in the classroom, civilized on the city bus, polite at the stop sign), during the dream we experience all more vividly.  The theory is that during the dream we are free to be more authentic both in our emotions and even in our responses, because there are no real consequences, beyond those filtered through the dream.

As I was studying dreams, I experienced lucid dreaming, which I do not recall experiencing much at all since my head injury.  I was able to predict remote occurrences and events while first dreaming them, and did so with chilling accuracy. I had a few recurring dreams primarily of places, whereas now I don’t recall any…though I do sometimes dream about people from the past more recognizably than places of the past.  One thing since my head injury that I have experienced in dreaming that I do not especially recall happening before the incident is that I dream about the deceased.  Maybe that has something to do with losing a mother or someone I cherish, but since the blow to the head, I have had some expressly fulfilling dreams where I notably get back what I have lost (more specifically, whom I have lost).  Of course, this is also very telling in the emotion and symbolism department, particularly to one who has recovered from a threatening condition.  It’s also interesting to note that the dreams I have had of deceased family members have been dreams that are memorable and ultimately joyful.  I think that says a lot about the brain’s impulses–to capture and to apprehend…as well as to live a life of joy, even as we realize our mortality.

__________

This is Day 26 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

In Praise of Aging

Romans

 

In Praise of Aging

Let’s talk about aging.  One thing that really upset me about getting hit HARD in the head was that I lost nearly a decade of my life to recovery from it.  I’m trying to be grateful instead of angry because, after all, I survived.  I know that far too many people do not, or they end up even in worse shape than I, losing even more years than I did.  That fact bothers me a lot; it also liberates me somewhat.  In my time of recovery from that head injury, I went from looking (and feeling) about 15 years younger than I was (50 years old, so really more like 35) to looking (and feeling!) 15 years older than I am (now 58, so more like 73 years old).

Even at 58 (or 73), although I often look and feel old physically, inside I am, as they say, always the same age inside. I’m still the 8 year old girl sitting on the school steps at the kindergarten door in the early morning, waiting for her patrol post to begin. Isn’t this the case for most of us?  We all have some fixed elements in our personality, temperament, intentions, interests…what we call the heart and the soul, and also in our intelligence quotients (which I was told concussion does not change).  As is often said by old friends after years apart: “You haven’t changed a bit!”  We all change, but we don’t change much.  People are who they are, evolved and mature or not. Often, it isn’t the circumstances that decide who a person is, it’s something much greater.

Look around, and you will see that no matter what age they are, many of the people you know have youthful qualities to them.  My mother and grandmother are perfect examples of this, and maybe yours were, too.  Or, perhaps your father or grandfather, an aunt, uncle, mentor or friend’s parent.  The problem is that most people ignore this factor, favoring fixed attitudes about age and aging.  For example, I recently observed someone mocking an elderly parent’s “to do” list, acting as if it was going to be such a drudgery and a ridiculous waste of time to do things for their parent, such as change the vacuum’s belt, empty the gutters, check the furnace filters…laughing at the parent’s needs and content of requests.  Such strategies seem like veiled attempts at ascendancy, to make one feel superior in some way.  However we take it, we can only hope to reach such a mature age, where we need to ask for help, which is never an easy thing for anyone to do.

Even middle-age people are recipients of age-discrimination.  The one that always strikes me resides in the romantic focus, most notably in the way men approach me.  As a young woman, I received unwanted attention from men wherever I went.  It was so obsessive, it was annoying.  It often made me uncomfortable, even though I knew I should take it as flattery. The thing is, you have to want to be flattered to feel flattered.  I could not sit in a restaurant without some man’s eyes distracting me from my company, nor leave an establishment without men’s heads turning to follow me.  I don’t mean to sound unappreciative or conceited, it’s just the way men were during my youth, or were with most young women, as far as I could tell.

Now, on the other hand, I may as well be invisible for all the attention I garner.  Men practically don’t even see me in most spaces.  They almost never ogle me and rarely if ever flirt with me, unless they themselves are like 90.  I like this change though, as I am not one for public attention–but, it is incredibly obvious.  If I go to the store with my daughter, they now give my daughter the same sort of looks and attention they used to give me. Sometimes I even find myself muttering under my breath, “You men are SO transparent!” Wherever we go, if there is a man involved, my daughter will get favors and things for free.  An oil change, a flight upgrade, you name it.  On the other hand, I have morphed into the proverbial chopped liver.  All I can say is that in a way I feel sorry for my daughter…and for all young girls (well, I guess except for the free stuff).  Unless a person is narcissistic, who wants this level of attention offered by strangers?  I always found it rather intrusive and unnecessary.

Of course, age discrimination is not exclusively male to female.  In any size group of woman whether it be two or twenty, the younger ones usually clamor toward each other, which leads to excluding older woman in undeniable ways.  Young mothers, for example, will read the works of or elicit the advice of other young mothers about every topic A to Z before ever considering to solicit any advice whatsoever from older, more experienced mothers, whether it be breast-feeding or a sick baby.  If you don’t find this to be true across the board, take a look at nearly any social media forum or watch more closely at any baby shower or bridal shower or workshop anywhere. And forget about unsolicited advice. If I tell my kids anything such as what courses to consider in college , they’re likely to tell me, “Mother, I need to learn these things for myself!” I mean, I was only a life long student and professor.  What do I know of such things?  My students were more eager to follow my advice than my own children were.  Again, it probably has something to do with that age thing.

Age discrimination goes both ways.  Reticence with “the elderly” just doesn’t always make a lot of sense to me.  Somehow, I have always valued older people and been interested in what they have to say.  I am not sure how I learned to value them, or how generations x, y, (and likely z) learned not to, but sometimes this just appears to be the cold, hard truth.  It also seems as though awareness goes a long way in how one sees things.  The more distracted or self-absorbed a person, the narrower their field of vision appears to be. I feel sorry for people who exclusively favor their peer group, because both old and young miss out on a lot of valuable information and experience.  Sometimes young people amaze me with their wisdom and insight. It makes me understand why they seem oblivious to us oldsters.  Still, I would be a better woman today if I had spent more time with my grandmother in her garden, or watching her bake bread, which she did better than anyone I have ever known.

Here is The Truth

The truth beyond age discrimination is that, at least for me, I do not mind being 58 years old at all.  I wish I didn’t lose eight years of my life to a dreadful condition, but now that I am back to the business of living life, the only part that bothers me is the not having as much energy as I once had.  Of course, people always discount the real contributor and say: “Well, you ARE getting older!”  Hmm, let’s see, 35 years old plus 15 would make me 50 years old today–exactly back where I started before losing 8 years.  Even all this denial has become familiar and is not in the end so bad, because the head injury did make me a lot lazier than I was before it.  I don’t mind sitting around so much now…even though I’d rather be like the old “old me” getting most of what I wanted to get done done, setting the world on fire with passion and verve.

Mary Engelbreit, artist. Gertrude Stein:"We are always the same age inside," author.

Mary Engelbreit, artist. Gertrude Stein:”We are always the same age inside,” author.

Being “old” really is not so bad at all, and everyone just needs to realize this.  When one has an active mind, a full heart and a joy in living, age just does not matter.  Last night, for example, we attended a housewarming party where we were among some of the oldest guests–you know, the dinosaurs from another era.  Yet, I thoroughly enjoyed the tour, the music, the dance party, the conversation, the food, the energy, even the tattoo art, surely as much as any guest present.  When my husband and I attend a concert, a fun run or walk, a hiking trail, an organized bike ride, a workout facility, a shopping mall, or even a birthday party, we are nearly always among the oldest guests.  We don’t have this problem so much at the movies, because we usually go to the matinee where all the oldsters hang out.  We notice that we are among the oldest, or often the oldest, but we always congratulate ourselves for trying, for participating, for being able to participate.

With age comes so much self-satisfaction and wisdom.  I have actually never been so comfortable with myself or who I am.  After a lifetime of having to compete, measure up, worry, fret, stew, and work until I could not see, I can finally just breathe.  No one is looking my way anyway.  Sometimes, not even me.  I rarely wear makeup now; I spend a lot less time in the mirror or getting ready for an event.  All of this is a pretty great feeling.  No one cares much what I am wearing.  No one cares about my gray hairs or wrinkles…for sure, they are all too busy worrying about their own.  Or if they are like me, too busy not worrying.

Life is About Enjoying the Ride

ride

Life is About Being You, Whoever You Are, However You Are

toes

This is Day 25 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

Beyond Party Planning

2015-05-01 at 6_Fotor DREAM

Beyond Party Planning:  1, 16, 85

One way to fight fatigue is to distract oneself, if possible, with whatever makes your heart glow.  For some, that means making memories with family and/or friends.  One of the worst problems brain injury survivors and their families experience is the victim’s interrupted role in the family (the same could be said for friendships).  Add to that how comparatively little one’s family (or friends) understands about such changes, and you get the making of a nightmare that can continue for years to come.

As a mother, daughter, wife, aunt, sister, friend, neighbor and teacher, the pressures on me after suffering severe head trauma were various and widespread.  At times, nothing felt worse than the misunderstanding of those I knew best.  At the same time, nothing felt better than the long-awaited return to some semblance of myself…particularly after a long stretch where that seemed increasingly doubtful (never give up hope).

While I have yet to enjoy a full return in terms of complexity and expediency, my enthusiasm, motivation, interest and creativity have returned.  In truth, I move and process slower, and cannot multi-task anywhere to the extent that I once could.  Where once I could do it all plus stay abreast of the housekeeping, now I can generally do one thing but not the other.  Thankfully, no one seems as disappointed by my challenges as I am; at least no one says anything about these sorts of things to me. My kids are grown, and my husband is tolerant and understanding.  Such challenges remain a work in progress for me even eight years post injury, yet I continue to grow stronger, however slowly.

Fortunately, this past year has been my best so far.  Cherished renewal arrived just in time for me to participate in some big events, as this year we celebrated in our family three milestone birthdays:  our grand baby’s first birthday, her sister–our granddaughter’s–16th birthday, and my father’s 85th.   After so much suffering and missing so many birthdays and events, I was determined and eager to do my part to make each celebration special.

It all started one year ago when our daughter-in-law decided to have a nice party for her baby, our grand baby’s 1st birthday.  At that party, we felt the 15 year old might feel neglected, so we pledged there to make it up to her by throwing a big Sweet 16 party in her honor, once her birthday rolled around.  The idea for my father’s birthday originated when he complained that he wasn’t looking forward to Christmas this year.  I thought how every holiday he is sad now that we’ve lost my mother and brother.  I wanted to find a way to create a new memory to replace the old ones that left him sad.  I know how he values family, so I decided to have a party with his remaining siblings and nieces and nephews–celebrate while he is still here and cognizant, instead of having only the sad memories of grief and sorrow.

All three parties turned out perfect.

For the grand baby’s party, I had these cookies made:

one cookies

I created this mantle garland out of photographs of her first year, and covered letters to spell out “One”:

mantle

As has become trendy for first birthday photo ops, we had a smash cake for the birthday girl:

smash cake

For our granddaughter’s Sweet 16 party, she chose a “neon” theme.                                                    

I wasn’t sure how that was going to go, but I was amazed at how well it went.  Our daughter-in-law had a friend who created this billboard welcome:

IMG_7926

They had a band, and the kids had good, clean fun…well, neon-painted fun, that is!  Everyone was so well behaved and so polite.  I kept thinking what a great contribution this party was to the entire school class–everyone knew where their children were, and there was plenty of adult supervision.

Our daughter-in-law made this ceiling piece for the center of the dance floor,                                                  using a hula hoop and surveyor’s tape :

She also provided neon paints, bracelets and necklaces, all of which the kids enjoyed:

IMG_7920IMG_8045
IMG_7984 copy

IMG_8071

IMG_7945

The high school kids came prepared with the right sort of clothing,                                                                     then got creative and had fun with the neon paints.

IMG_8026

IMG_8030

There was a band!

IMG_8129

Neon cupcakes!:

IMG_7932

And for my contribution, I brought a candy table–didn’t realize it would be set out in the dark of ultraviolet lighting, but it was still a big hit….Perhaps best of all, all gone by the end of the night!:

IMG_7873

IMG_7884

My father’s 85th party, believe it or not, was just as fun, if not a bit less raucous…

I tried to keep things simple.  Some festive balloon bouquets at a casual family restaurant with great food…I made my dad, ever the poet and never at a loss for being able to laugh at himself, a hat that said, “85 and Still Alive,” which he loved, and a button to bring out the kid in him that said, “Kiss me, I’m the Birthday Boy.”  We told stories and gave toasts; I think it was very nearly the best birthday party my dad ever had…

85

IMG_8177

hat

 

 

 

 

 

                                                                     They brought out a heart-shaped pizza with our salads, because my dad is, really, such a big-hearted guy:

heart pizza

And of course, when it came time to sing “Happy Birthday,” there was a BIG cake!:

cake 85

What blessings these occasions were, even though all three parties ended in two-to-three day bouts of fatigue for me.  I was especially ill after the girls’ parties, because we had to travel quite a distance to attend them in another state.

The important thing is that I was able to help plan them, shop for them, participate in them, be present.  

These were moments I missed when I was in worse condition, and they are now moments I never take for granted…no griping, no resentment whatsoever.  I sometimes wish my family understood what I was suffering during my recovery from acquired brain injury, but maybe it’s best they were focused on other things, imagining I was just in some weird and annoying funk.  As long as I can contribute something now, despite the fatigue that follows, I can continue to work toward regaining the strength and energy that once made me seem completely competent in everyone’s eyes, even my own.  I still miss those days…but I am enjoying these days to the very best of my ability.  In some ways more so.  After all, I have been to the other side.  I am a grateful survivor.

________________

This is Day 24 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

IMG_8039

On Social Isolation and Brain Injury

Fatigue is common with concussion, even long lasting, which has to do with the severity of the injury and the age of onset.  For example, when I was 12 years old, one winter I slipped on the ice while walking to a friend’s house, causing a concussion serious enough to hospitalize me.  I had some of the same symptoms at 12 years old that I did at 50, when I was hit 38 years later by a heavy, fast-traveling steel door.  With both injuries, I was tired, listless, nauseous, and extremely weak for more than 48 hours.  At 12, I was able to leave the hospital in 6 days and return to school in 8 with no notable effects whatsoever.  At 50, it was a much different story, even though the force of the blow was admittedly much greater.

One of the things that goes along with the age of onset of any illness is the development, sophistication and maturity level of the patient.  These things generally work in favor or against healing, depending on the particulars.  Of course, all this is also intricately connected to one’s social world.  At 12 years old, for example, quite a fuss was made over my hospitalization as family, school friends, and even teachers visited or sent well wishes.  At 50, even though it was nearly four decades later and one would imagine people would be ever more knowledgeable about head injury, I had almost no fuss made over me, and in fact became secluded with help originating almost exclusively from my husband.

As a consequence, many adult head injury survivors find themselves isolated from peers, unable to drive or even walk safely, and without the energy or communication skills to keep up with fast-paced conversation. Furthermore, if you talk with adult survivors experiencing the effects of brain injury, it’s not unusual but rather the norm that they suffer long lasting chronic fatigue.  Some doctors like to think fatigue goes away or should go away within a certain amount of time, or even that it shouldn’t be there at all; but then, they aren’t the ones who have been hit in the head.  They really cannot know what the experience feels like; they can only guess using whatever instrumentation and testing is available to them…and hope to help with whatever known treatment is available.  Sometimes treatment can be quite helpful, but not always.  Either way, the period of sick leave or convalescence often changes a brain-injured survivor’s life in a big way, because they simply cannot participate in life the way they once did.

When writing about my fall outdoors two days ago, I failed to mention (in Wednesday’s post) that I had to cancel a much anticipated breakfast with a friend.  This becomes a common occurrence for people unable to meet their social obligations, because they just are not well enough to live normally.  For the survivor, this causes more problems than anyone might realize.

Thankfully, my friend yesterday was understanding, and we made plans to meet another time soon. Unfortunately, during my early recovery I found that this was rarely possible, and also that not all people are as patient or as gracious.  In the end, interpersonal relationships are challenged to the point that many (if not most) of the injured survivor’s friendships end.

At this point, due to repetitive health challenges such as fatigue and falling, it feels as though I have run the gamut of dropping out of social situations and activities that I used to engage.  To an extent, the hard part has been that no one has come close to understanding.  I am sure that not one person who cares about me tried to read anything about traumatic brain injury or understand it on their way to analyzing the new me.  It’s frustrating and hurtful, but when a person is especially ill, she just doesn’t have the energy it takes to worry or stress about what people imagine. Equally troubling, cancellations and refusals end up hurting those holding expectations of your attendance, and then you’re feeling bad on top of feeling bad.  The last thing a survivor wants to do is hurt anyone; after all, they above anyone know what hurt feels like; they’re not plotting or scheming anything–they’re just trying to get through what sometimes can amount to some of the roughest days of their recovery.

I specifically recall one holiday season when we were invited to a friend’s annual party.  I said we would attend and we were expected, but a wave of severe fatigue hit and I spent the entire night from daylight on in bed, in pain and dreadfully uncomfortable.  This was before my nasal surgery, which helped my breathing and was so key to my improvement, so that may have been one of the complicating factors.  Needless to say, this person was so offended that my husband and I didn’t show as indicated, that our friendship never recovered, even though I called the next day to explain.

I also received strange looks from fellow members after dropping out of a group I belonged to that I just could not manage anymore while also working.  Even worse, my own group of friends always treated me as though I was a hypochondriac.  Whenever I mentioned any of my symptoms or tried to explain to them what living with post-concussive syndrome was like, they would look away, look at each other, or sometimes just break out laughing.  I never could understand how such well-educated women could be so narrow in their thinking, and so heartless and unimaginative…but they are a highly competitive group, accomplished people with high energy.  I was one of them myself, so I know what it’s like to teach three classes, meet seven students in conference, go to a department meeting, then play nine or even eighteen holes of golf before fixing dinner for the kids.

Still, I thought I would walk out the night, suffering from post-traumatic stress, I mentioned wanting to have my heart checked because of the tightness and fluttering, and they all broke out laughing and almost couldn’t stop.  I wasn’t in on their inside joke, but I could see there was one, and every time I attended those gatherings, I would say it was to be the last time.  I’m sure they hardly cared what I was thinking, since, for whatever reason, they had given up believing that I still could think at all.

People who don’t feel well are not understood.  People who do feel well need to try to have a little more imagination, at least when it comes to what it means to be ailing.  People can be a whole lot less compassionate than we might imagine.  I guess everyone is afraid of “babying” people or “over-indulging” them, or just “giving them attention,” because they have been taught to be suspicious and to suppose that that is what every sick person wants.  What a sick person really wants is to be well again.

When a person that you know to otherwise be credible becomes ill for whatever reason, and they try to tell you what they are experiencing, you generally have no reason not to believe them.  They are trusting you with words and feelings that are hard to articulate and hard enough for them to accept themselves.  They don’t want sympathy.  What they want is a vessel for their fear, a place to vent; or, some information. Support is always good, of course, as is love, but out and out denial, laughter, judgement or scrutiny is a waste of your time and theirs.

This is the reason sick people withdraw.  It isn’t necessarily depression, although isolation can cause depression, so much as their realizing how pointless it is to try to keep up and to connect with people who refuse to slow down and listen or care.  It is true that everyone has challenges.  When someone is suffering some illness, however, we cannot pretend to be in the same equal world where our troubles are just as important as theirs, feeling impatient that they just don’t get with the program.  Perhaps this sounds extreme, but I promise I experienced it.  Even my own family had trouble understanding, and only my husband who witnessed so much of my suffering had any notion of just how serious my condition was.  Of course, I tried to act “normal,” but it is a little difficult to hide deficits (particularly physical and verbal) with head injury.  People can’t see your pain, but they do hear your speech slur or witness you searching for the word you want but cannot locate.  You look healthy enough to them, so instead of wondering how it all works, they instead wonder if your delayed communication isn’t some adopted affectation or psychological quirk.  Do they really think a person would do this to get attention?  I know I would much rather have my active and productive lifestyle back.

If you are a friend to anyone who is suffering an illness, the thing you can do is carefully watch and listen. Pay attention, but do not judge.  About a week ago, I had an hour long conversation with a neighbor who recently underwent brain surgery for stage 4 brain cancer.  His wife stood in awe at my patience with him and how I kept finding ways to navigate the conversation and move it forward.   Sure, he mixed things up and repeated them and asked questions about things he already knew well; sure he said some odd and erroneous things, such as saying twice that his daughter is 72 and his son 78–when it is more like 34 and 29–but whenever I corrected him I didn’t bust out laughing, and sometimes I just let him say the wrong thing or stammer or do whatever he needed to do.  After all, the poor man kept tearing up as it was, telling me the small things he’s come to value like an invitation to breakfast or a visit from his children on his birthday.  He must be terrified.  He’s been emasculated enough by losing the ability to drive.  For all I know, he may make a complete and miraculous recovery.  None of us can know.  And whether someone lives to tell the story as I have, or sadly loses the fight, I would think one would want to treat that person with as much dignity as possible.

How could it be that we have become so distracted and self-motivated

that we have lost our fundamental respect for another person’s life?

You may say, “Oh, I am so sorry you had this type of experience!” or “What kind of friends do you have?” Yet, I assure you, we all commit these oversights every day. It’s easy enough to do. The thing to embrace is to try to learn what you can, to try to think before you judge, and to recognize always that that person who is so annoying or confusing or slow or whatever you ascertain they are, could one day, more easily than you imagine, be you.

_____________

This is Day 9 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

The Frustrating Game of Finding Useful Treatment for TBI

rocks

Head Injury is Full of Surprises

Sustaining a head injury is full of surprises.  First, you are shocked by the blow itself, then shocked that you are still alive, then by how much pain and suffering the injury causes, and then by how little is known and how little help is available…AND THEN, by…

How long it takes to heal.

Add to the mix a lot of fear of the unknown, the weird reactions from co-workers, family and friends…and well, you can start to see how head injury ironically ends up keeping survivors on their toes.

There is a lot of suffering, a lot of waiting/of trying to endure, a lot of not knowing, a lot of holding on.

The Need for Improved Treatment

Physicians seem somewhat mystified by head trauma, which also is almost always brain trauma.  As a result, they have perspectives that tend to be sort of locked, limited, and dead ended.  A change in perception by the medical community, along with some innovation, could rapidly advance the treatment of head trauma.  Surely researchers are working on this, but for those who suffer, help hasn’t and can’t come soon enough.  The alarming thing to date is how little is known about the brain’s plasticity, or ability to rewire itself.  In fact, it has only recently been discovered that it can rewire itself, that new neuro-pathways form.  The result, in part, is that victims are given a generally small window of recovery time, when much more time is often needed.

CARTOON

One thing for certain, there are currently no clear approaches to treatment that are tried and true.  As a consequence, patients get ignored and their setbacks go unaddressed.  At the same time, there are all sorts of tests being readily ordered, and these tests (e.g. CT scans, MRIs) almost never render data that results in useful treatment, no matter how severe the results or how insignificant.  Patients also rarely are told the purpose of such examinations or even their advantages, and when they are told anything, explanations are brief and questions go unanswered.  The bigger problem (if it can be bigger) is that doctors seem to order these tests as solutions in themselves.

All this approach does is get one patient out of the physician’s office and allows the next to come in:  “Next.”

Through it all, the patient is left wondering what treatment is all about, and when they will experience some relief from their symptoms.  All the while and despite the added confusion this process delivers, the patient is so desperate to feel better, they typically proceed with hope.  This resolve does not even factor in the input of caregivers, which is generally but not always supportive.

Testing and Recovery

Unsuitable testing needs to change, and new diagnostic approaches must be designed.  People are suffering needlessly, and recovery in many cases is drawn out much longer than might be necessary. One of the biggest misnomer’s is that brain injury causes a lack of motivation, when in fact, brain injury survivors hold out hope and are highly motivated to return to pre-injury status.  Prolonged post-concussive syndrome is highly uncomfortable, yet survivors are acutely aware of their needs.  They are often able to articulate the disabilities, if not answer canned test questions. One would hope patient input could be key to medical advances…not just unveiled deficiencies that could improve with time and intervention.

concussion poster

Testing is common in brain injury remediation, and that is about the best you can say about some of it at this point–at least from a patient’s perspective.  Head injury patients need treatment, not ambiguous testing that does not guarantee treatment.  Testing might not even be the fault of doctors…but if it is, it should change.  The advantage of testing should be more clearly defined–who actually benefits from it?

It almost doesn’t matter whether your injury is severe or mild, you are in for a long road of physical agony and drain–on your body, as well as your heart, patience, and pocketbook.

Prescription and Other Therapies 

Sometimes, medications are prescribed to treat post-concussive symptoms such as dizziness, nausea, and fatigue as well as pain, which is typically chronic and often severe.  Medications can work wonders, but they generally come with their own sets of problems, and better ones might be developed.  Additionally, length of prescription therapy is key. Some medicines can pass their point of therapeutic advantage and become toxic. All medications for brain injury need to be carefully prescribed and monitored, yet monitoring itself takes time and money.  Any chemical recommendation must also come from an experienced or knowledgeable physician who is willing to watch closely its affects.  This doesn’t seem to be the experience of most survivors at this time, and certainly wasn’t the case in the past for those who were left interminably in rehabilitation facilities.

Prescription therapy also means the patient must be compliant by taking the medication, and on schedule. Medications can also feel threatening to a brain-injured individual, who has already experienced indescribable near-death terror and suffering. Doing anything on a schedule is its own obstacle when a person is feeling so uncomfortable and so fatigued. There is a lot of being bed ridden, and finding it difficult to get up at all, no matter how much the patient wants to get moving.

Even if the patient is lucky enough to find a high caliber physician who knows the right medicines to prescribe, getting to a doctor’s appointment can be difficult in itself.  Many brain-injured individuals lose the ability to drive a vehicle, at least temporarily.  Plus, when patients don’t feel well to begin with, car rides and long waiting room visits are a trial all their own.  Doctors are also busy, and that makes getting in to see them a dance all its own, not to mention the restrictions placed on both the provider and the patient by the insurance companies.

It seems that most people do not realize that a lot of concussion recovery is holding on for dear life, like you’re on the fastest roller coaster–doing dips and drops on an empty stomach, with strobe lights all around and loud music blaring.  There’s also the belief that that is the patient’s fate, and therefore there isn’t anything to be done to help them.  Breaking through this Neanderthal misconception could be the dawn of many improved therapies.

Supplemental therapies such as Reiki, cranio-sacral therapy, vitamin supplementation, cognitive/ physical/occupational/speech/vision therapy, meditation, and even massage are all useful considerations. The thing about supplemental therapies is that most are not covered by insurance, no matter how useful or beneficial.  Timing is also key to supplemental therapies, because what works later in recovery is not necessarily what helps early on, and vice versa.  Receiving therapies out of synch sometimes leads to increased discomfort instead of improvement.  On the contrary, adding techniques such as these will often render impressive improvements, particularly in pain management.

A Final Note About Physicians 

Despite the frustrating state of medical science at this time, the brain injured patient does not want to go without a physician.  Finding a caring physician is equally important to finding a competent physician who is knowledgeable, but both are unfortunately feats in themselves.  Whether a physician cares about you or his own practice or is dedicated to his science alone is of little consequence–you need a physician who actually does care.  How you accomplish this has a little to do with luck, but if you find yourself with an uncaring physician, you should definitely seek referrals from others.  I cannot stress the value of having a physician who cares about your recovery.

You can help your own situation by getting the doctor to like you.  This isn’t an easy task for any brain-injured individual:  You know the discrimination you face daily, the drudgery of being discounted and relegated to inconsequential…the drain head injury presents to all connected.  Please note that you do not win the physician’s favor by buying gifts or flattering them or any such tactic; you pretty much win it just by being yourself…by letting the physician see that you are a real person.  Be true to yourself as best you can so that your doctor can at least see glimmers of your pre-injured self.  You also win your physician’s favor by being co-operative.  This means you have to check your anger and frustration at the door, not get into any spats with the receptionist or staff…and if you can do that with a head injury, you are probably pretty likable by nature and/or well on your way to recovery.

Important Insurance Information

When securing a physician, do not forget to first check with your insurance to make sure they are covered and/or in network.  This should be done upfront, but some brain-injured people can find ways even to mess this up.  For example, I made the mistake of changing insurance companies mid-treatment (because, as you know, complex analysis sometimes eludes us, if only temporarily).  I switched carriers while going to the same doctors, and somehow thought this would save me money because the monthly premiums and co-pays were slightly lower (though they eventually increased anyway).  The end result is that I am still paying my way out of that mistake–for treatment that was once nearly covered in full.  It’s also unnerving, because I certainly never meant to compromise the doctors’ payment or my own ability to pay–I thought I was doing something smart.

Remember also, you must have an advocate.  This is true about anyone who is ill, and really about anyone in case they get ill.  More on that another day…

Here is a video that speaks to the quandary of finding treatment that helps.

© Debra Valentino, all rights reserved.

A Note to Brain Injury Survivors

as posted on Brain Injury Association of America's Facebook page

as posted on Brain Injury Association of America’s Facebook page

March has been named National Brain Injury Awareness Month, and while there is much to say to grow awareness of this acquired condition, I’ll start first with a link to some common facts herehere, here, and here.

While this blog is dedicated primarily to brain injury awareness, this specific post commemorates the plights of fellow sufferers, and as such is written for those actively recovering from brain injury.

To anyone who has sustained a head injury of any magnitude, and most particularly to the newer sufferer who might have similar questions as I had (when I first sustained my blow in September 2007), I congratulate you!  You have come through the hardest trial of your life, and in many cases beaten the odds to earn the unwanted but proud label “Survivor”–as in, surviving life over death. The road ahead may be long. Here is an abbreviated, albeit detailed list of a some of the things my experience revealed that I hope may be helpful to you as you endure the journey:

Tips for Head Injury Survivors

1.  No two head injuries are the same.

This is something I was grateful to learn early on, but something that remains glaringly true for me to this day.  Your injury depends a lot on how you were hit and where on the head, the speed and force of the impact, and specifically the kind of shape you were in at the time, including your age and even your occupation.  It also depends somewhat on the lifestyle you led leading up to the blow, such as whether you smoked cigarettes or marijuana.  In fact, it could be said that the possibility of head injury is the biggest motivation for healthy living, just ahead of lung cancer and alcoholism.  Of course, some people who are considered exceptionally healthy at the time of their injury are still at risk of the effects being fatal.

In my case, I was a non-smoker, athletic and healthy, but also very active intellectually–an avid reader with advanced academic degrees.  In time, I was able to return to teaching and continue to enjoy an active life cognitively, but I have never managed to do the same physically…to get so much accomplished in a day, to golf 18 holes in one day, or sail a boat, or even hike much or for long, all of which I enjoyed regularly before my injury. For me, the effects have been primarily physical and most notable in reduced strength, energy and agility. For a more gifted athlete, the body might return faster than other cognitive abilities return.  It’s difficult to generalize or predict, but I do suspect that all the reading I did in the years prior somehow helped restore me cognitively. While I also recovered lost speech and some of the lost hearing, others may experience longer lasting and more severe deficits in these areas.  Again, the results of your condition are dependent on many factors, and some of these get eclipsed.  The more you pay attention to your symptoms, the better you can help doctors determine a course of treatment.

2.  You may have suffered additional injuries.

Although I took a direct hit to the forehead and face, most of my treatment focused on recovery from brain injury.  Not much attention was given to my vision, nose, teeth and jaw, though several months later these proved also to be adversely affected, as well as my hearing, neck and spine.  Because of the brain injury, my balance was poor for a good long time, and this led to additional injuries from falls.  In fact, I am still accident prone–bumping into door knobs and tripping over chairs–I am able to wipe out getting out of bed; it’s almost like my new sport!  I have gotten so much better though, and my recovery continues.  I am lucky to be able to walk without assistance, though significantly slower than before my injury.  Many people are not as lucky in this area, and they require the aid of a walker or even a wheelchair.

What is important to note is that if you are aware of a discomfort that gets minimized because your brain injury takes precedence, keep reporting it to your physician.  Once additional areas are diagnosed, you can obtain the necessary treatments to get you on a fuller road to recovery.  My experience has been that the more pain and suffering you can eliminate, the faster your brain will actually heal.  You don’t need to be expending a lot of energy overcoming small discomforts, because these detract from the big energy your brain needs to repair itself.  The same, of course, can be said for stress.  The more stress you can eliminate, the more energy your brain gets to use for the ongoing hard job of healing itself.

3.  The length of recovery is unknown.  

When I asked doctors how long I might expect to experience the effects of concussion, I was told 2 weeks–30 days–then 45–then 60–then 90 days–then 3 months–then 6–then 18 months.  When all of these dates came and passed and I had missed every deadline, I was diagnosed with post-concussive syndrome that continued to last even beyond that expectation. The length of disability is probably directly connected to the severity of the injury coupled with one’s age and general condition of overall health.  When they diagnosed me, I suspect that doctors were going with baseline numbers that were outdated or non-specific.  My age of 50 years at onset of injury as well as the intensity of the blow I sustained (which they apparently dismissed or underestimated) seem to me the possible reasons why doctors’ initial predictions failed.

Also, I do not believe there was (or is) a test for the amount of shearing, bleeding and swelling that takes place–or if there was one, I was not given it or its results.  I did have CAT scans, but never received thorough results of their findings.  Generally speaking, aside from cognitive testing (which is very in depth), it feels like no one wants to tell you anything–or that they themselves don’t really know.  They do a lot of listening, but they don’t generally do a lot of informing.  As a lifelong student and conscientious steward of my own well being, this was a huge frustration to me.  I always wanted to know the names for things and the reasons, but doctors sometimes misread my pre-morbid curiosity as evidence of cognitive healing, when in fact I wasn’t yet able to walk ten feet without tripping or falling, had chronic ringing in my ears, and was still experiencing seizures daily.

Without question, better diagnostic procedures are necessary in order to determine stronger estimates and treatment plans.  At any rate, recovery takes as long as it takes, and sometimes is never fully attained. This is a hard reality, but it doesn’t mean improvement ends. Improvement continues.  Your brain is the most incredible machine ever constructed–and if random injuries can happen through no fault of your own, then so can miracles!

4.  Your life has changed, but you look the same.  Except that you don’t really look the same.

Brain injury is considered one of those invisible illnesses–you can’t see it, so people don’t acknowledge it. You don’t typically get casseroles or pink ribbons or called anyone’s hero–there’s no chemotherapy to take, no race that can be run.  Mostly, people just like to think that you are nuts or stupid or worse…that’s one of the hardest parts, but pretty much a given, because brain injury is full of stigma.  People judge brain injury survivors in ways they never would think to judge other survivors of serious illnesses.  You realize early on how narrow-minded many people are, and you’re just glad that even as they’re calling you “strange,” your own mind is expanding–even though you’re the one with the head injury.

Only certain people will tell you that they cannot tell that you have sustained a brain injury.  Others will be shocked at the changes, which are sometimes subtle but not exclusive to behavior (contrary to popular preconceptions).  You may, as I did, age significantly.  As one person exclaimed in horror to me: “What happened to you?  YOU LOOK LIKE YOUR GRANDMOTHER!”

It’s not a lot of fun.

Your eyes, your face, your countenance–all of that changes significantly with a brain injury.  Add this to any physical scars or wounds you may suffer.  Then add or subtract your weight in any number of pounds. If you need medication, you will likely gain weight–or, at least I did.  If you suffer severe fatigue, as I do, your muscles will atrophy, and everything will drop about a half a foot lower.  This change in appearance is harder on you than on anyone else.  When you look in the mirror, you will see a new person–your new self–and every time you see this new person it triggers a grief for that healthier pre-injury state, for that lost life.

You have to be tough, and you have to be vigilant about recovering and/or rebuilding your self-esteem…but no worries, because surviving a head injury teaches you for once and for all how entirely bad ass you really are.

5.  All your relationships change; you will become the CEO of your own self.

It’s been said that by nature, people don’t like change.  People especially don’t like the change that head injuries bring (whether real or imagined by those who knew you once).  They especially don’t like what they can’t understand.  Of course, there is a lot of denial–a lot of people wishing you would just shut up and not refer to this traumatic event.  After all, if they didn’t see it, they may question whether it really happened. They don’t want you living in a past they don’t realize is truly your present.  Such reactions are another subject all their own, but don’t feel too aghast when you discover this challenge exists.

There is a lot of negativity connected to brain injury, so you need to be the eternal optimist and CEO of your own self.  You alone know what your path has been.

Just know that when a brain-injured individual exhibits the standard changes in personality or behavior associated with the trauma, it compromises relationships…and when they DON’T exhibit such behaviors, people will imagine or project them onto the brain-injured individual.  This is truly a damned-if-you-do, damned-if-you-don’t condition, in that most people do not credit your victories, but exaggerate your deficits.  This may not be true for child survivors of head injury, but it is generally the case for adult survivors.

People will try to inhibit your growth in all sorts of offensive ways.  You will grow a thick skin.  People will also think you can’t discern their rejection or their laughter even when it is right in front of you or right behind your back–or, they’ll simply stop caring that you can.  They don’t know that there are subtleties; that you recognize when they are making fun of or mocking you, and that you will remember these moments–or again, they won’t care.  You become a sort of non-entity to them.  Remember, too, that this is typically not a sympathy-inducing condition.  It’s all unfair, but it is the way it is, and you can’t let yourself be taken down farther by any of this.

brain blog

Many people will enjoy your new (though usually temporary) lowered status.  It gives them power and prominence.  It’s okay–it’s their un-evolved thinking, not yours.  Sometimes, the ignorance can be so profound that it can seem that people practically equate brain injuries with decapitations–as if your whole head fell off.  You have to learn to shake off their primitive inferences.  Survivors of brain injury have a long road ahead educating others.  That is okay, because we are actually more patient than most of the people misjudging us.

All of these negatives can actually be to your advantage.  They keep you constantly adjusting, and they certainly keep your brain firing.

While your communication skills might be encumbered, you know that you still perceive a great deal. Some, if not most of your perceptions are accurate. Don’t dismiss your thoughts because others do. Don’t undermine your recovery because others don’t care about it. Don’t fear you cannot improve because others tell you that you can’t, or treat you as if you won’t. Putting you down makes those sorts of people feel big, superior. It enables them to dismiss what they don’t know how to address. Or maybe they just feel helpless. If they care, you will know it.

6.  Solitude is not a bad thing; embrace it.

After brain injury, you have to and will become your own best friend.  You will spend a lot of time home and in bed, unable to socialize–and this will make you fall out of favor with some people–and that’s okay. It’s all okay.  The rest is necessary, and it will restore you.

The greatest gift you will receive from your brain injury is learning to live by yourself–alone in your own perseverance.  Notice how your mind still serves you. Do not focus on what you cannot do, but rather focus on what you have re-learned and on what you are doing in this very moment.  Perhaps your wounds have healed.  Perhaps you are seizure-free.  Perhaps you have an awesome physical or speech or occupational therapist.  Even with your disabilities, you can still think, still imagine, still invent, still meditate, still pray–and if you are really lucky, maybe you can even remember to look at your planner to see where you are supposed to be and when…and maybe you will even show up on time.

One thing for certain, you don’t need anyone who doesn’t give you the respect you are due.  You have survived a life-threatening blow to the head, and you have so much still left ahead (no pun intended). Feel sorry for those who do not have a shred of the empathy you have developed.  Be proud to stand on your own and say, “I lost the one organ that controls every single thing including the breath in my body, and I am here to tell the story”…and then, tell it.

Never be ashamed to admit you have suffered a closed head injury.  It is nothing to be ashamed of, but in fact an accomplishment of the highest order.  Remember those who were not fortunate enough to survive. Endure for them.  Endure for all the millions yet to experience this harrowing affliction.

That is how you celebrate Brain Injury Awareness Month.

That is how you celebrate yourself.

I am amazed by your stories.  I am amazed by you.

Thank you for celebrating with me.

Here is some of the best news we have heard lately.

Here is a video worth watching, if you are interested in understanding TBI.

Namaste.

© Debra Valentino, all rights reserved

On The Pursuit of Gratitude and Compassion

I am at my daughter’s home in Denver, Colorado. This is a significant trip, because it marks my second solo travel since my head injury: my second flight unaccompanied. Plus, I am here to help her sort, organize and pack in preparation for a move to a new house. This is significant because having a blow to the forehead meant a decrease in “executive functioning,” and these are among the very skills–sorting, organizing, packing–that to this day cause me some of the greatest fatigue. I have to take these tasks in small amounts of time, but I’m grateful to be able to do them once again, even though I am sadly not as quick or as efficient at any of them as I once was.  No more marathon cleaning sessions for me.  I actually miss that a lot, though.

The flight here was as ideal as air travel can be, save for the stale diet coke and the four-month-old who cried for one hour and forty-five minutes.  It was agitating to listen to, but I felt sorry for the baby’s mother, who seemed to be passing all her anxiety and neuroses onto her child.  I wanted to intervene, but instead of reaching and grabbing the baby to settle it, I just smiled and asked how old he was, while offering the kindness of approval.  She and the father were friendly, and seemed relieved.  They were clearly nervous, and trying everything they knew to quiet the infant–which involved a lot of jostling and shaking and shh shh shh-ing, with lighted toys and rattles and such that only seemed to agitate the baby further.  The baby seemed to want a good swaddle or holding, instead of all the stimulation they were giving him, which required more effort and concentration than he had on this crowded flight.

The gentleman seated next to me on the airplane started the flight by nodding beyond my aisle seat toward his center seat, saying, “I just ruined your day.” I could only guess he was referring to his size; he was a large man.  He was very nicely dressed, and obviously on a business trip.  He said he was Boston bound, but because of the snowstorm out east had had to reroute to business in Denver (which by the way, is enjoying temperatures in the 70s, mid-winter).

Toward the end of the flight, just before landing, and once the baby had finally settled, I spoke to the businessman in the next seat.  He noticed my reading, so I inadvertently started telling him how my reading skills had changed since sustaining a head injury.  He asked how it happened, and when I told him, he seemed stunned.  I went on to explain that I had temporarily lost the ability to read and speak, and that the end result for my reading skills, which had previously grown to be rather sophisticated, was that they had reverted to a junior high or high school level–but that I was grateful to be able to read again, and especially on an airplane while in flight.  As we chatted, I learned that he currently lives in Notting Hill, a swanky area that I coincidentally had just toured in London on my first solo trip just last November.  I asked him if he was familiar with this place, and of course he was:

It’s a small and wonderful world.

daughter
My daughter is a terrific host.  She is also a consummate planner, and very thoughtful.  This morning I got to sleep in and woke up to a darling note with the day’s itinerary (hers and ours) and a full pot of freshly brewed coffee.  I am so grateful to have such a wonderful daughter, and to have this time with her, even though I feel like I am back on retreat!  Maybe especially because of that.  My proudest life’s achievement, she just warms my heart and makes it sing.

It must be serendipity that when I fired up my computer this morning, one of first things I saw was this video, called “A Very Happy Brain.”

 https://www.youtube.com/watch?v=GZZ0zpUQhBQ&app=desktop 

 

May all your days be blessed!

 

© Debra A. Valentino, all rights reserved

Obstructive Sleep Apnea and Brain Injury

sleep study

Of all the things a woman looks forward to in life, a CPAP machine is not one of them.  cpap mask

Yet this is indeed what lies ahead for me, so I’m leaning on the positive side of shock, and bucking it up for happy visits with the wind goddess.

It has taken a record number of twelve sleep studies to obtain this unpopular, commonly prescribed treatment—an amount of testing so remarkable that even the sleep technicians claim never to have met anyone who had that many sleep studies done before. Each test is rather grueling, a complete disruption of any sleep a person might have, and basically a form of torture in itself. By the 9th test, I refused to have another one.

Somehow, the doctor prevailed, and today I guess you can say that I am glad he did.  It’s been a 3-6 year ordeal.  To tell the truth, I actually cannot wait to get this machine. Yes, it’s the new post-menopause contraption that every chosen woman attempts to make her peace with…and more often for men, the full-face mask that silences snoring. For me, this treatment may very well prove temporary, if I’m lucky enough to improve—or unlucky enough to require further surgery. But having tried the CPAP once before and failed, I’m ready to go it again, for the simple fact that I live every moment as if I cannot breathe. I no longer know the simple human sensation of drawing in a deep breath of fresh air. When I inhale to welcome the day, start a daily yoga routine or catch a glimpse of spring, no air seems to fill me. I no longer have the experience I enjoyed all my life of inhaling oxygen, and here is the reason why:

blog on readingIt seems that when that malfunctioning steel door hit me in the head at breakneck speed back in 2007, it also smashed to smithereens my nose cartilage and sinuses. For years I walked around (or more often, laid around) in excruciating pain–assuming the pain and fatigue were due solely to the torn meninges, fractured skull, and whiplash, which gave me not a small cervical and spinal injury…along with the unrelenting pain of atrophied muscles, resulting in chronic fibromyalgia (which has thankfully pretty much resolved).

Yet all along I really wasn’t taking in nearly enough oxygen, which is obviously vital to healing all of these structures. Looking back now, it seems odd that no one was alarmed. I felt the alarm in my body, in my lungs, and in my inability to breathe. There was a persistent stabbing pain in the lower lobe of my lung. I felt most obstructed in my chest though, and in my face. For maddening days and nights I was left springing up and gasping, “I can’t breathe. Oh, I can’t breathe.” Neither my husband nor I knew exactly what to do.  After all, I had told the doctor. I told all the doctors.

There were times when an Emergency Room visit seemed imminent. It certainly felt like I was suffocating. I wasn’t sure if I really was—or if I was just experiencing remnants of post-traumatic stress from the very freaking hard hit. It was difficult to discern, and more difficult to endure—and to some extent, still is.

What people need to know is that head injury comes with all sorts of complications—not the least of which is other peoples’s perceptions of the ailments. Unfortunately, these perceptions most often qualify as misperceptions. Indeed I kept complaining that my nose hurt, but even the most caring and astute doctors who would look at me baffled, with steady stares and sometimes slanted heads, as if to say, “Maybe you just think your nose hurts.”

It took several years for any doctor to finally recommend me to an ear, nose and throat specialist. Initially after the injury, I bloghad visited an ENT physician directly, because I was sure I had a broken nose. Having had two broken noses prior, I knew what they felt like; there is really no mistaking them. Yet, the first ENT claimed my nose was fine. He was obviously wrong, and this just delayed my recovery, and certainly leaves me with something else to baffle over.

The referred ENT performed a nasal endoscopy that showed a 90% obstruction on one side of my nose, a 60% obstruction on the other. I could tell when they tested me that something was wrong, because even with anesthesia, the insertion of the scope hurt like a really bad word (“mofo”). I was given three or four other breathing tests, and starting to face a new reality about the effects of the horrible incident that happened one day when I was at the peak of health, just trying to help my ailing mom accomplish a little shopping.

blog blink of an eyeThe composite data from the breathing tests was alarming enough for the doctor to put in an immediate order for a CPAP machine for obstructive sleep apnea (OSA). He told me right then I might need two surgeries to correct the problem, but we were going to start off conservative because in his words, I’d “already been through so much.”

So all this time prior, I was deprived of oxygen due to obstruction of the nasal passages from the bleeding, swelling, scar tissue, and broken turbinate bones that resulted from the blow to the face that also caused my brain injury. If there was or is a neurological component, it has yet to be uncovered. At least in the short-term, there was a clearly structural cause that could be remedied, and there is no reason not to continue to be optimistic.

I would have never guessed I had developed a sleeping disorder because I really did not snore (even when I asked others to check to see if I did). However, I also rarely slept, had for the most part stopped dreaming, and had trouble getting going in the morning as well as staying awake, particularly in the car, which made me stop driving for quite a good while. I was also having a really hard time taking off the weight I’d gained during the ensuing years since the injury (nearly eight pounds per year), which only complicated my health issues. I told the associate doctor, “I’m having trouble losing weight,” and he replied, “And you won’t be able to lose any, until your obstruction is opened and your apnea corrected. You will probably even continue to gain weight.”

Those words surprised me, but also made more sense than almost anything I had heard in my treatment. My diet had changed OSAsome, but I was mostly sedentary, yet also worked diligently to do whatever I could to recover my normal weight (mostly all for naught). Now I understood that the lack of oxygenation circulating in my blood was at least in part responsible for throwing off my metabolism. I was always cold, easily fatigued, and I wasn’t really processing food or at all able to exercise like a regular person my age. This new information helped me look at myself and at my own struggles, as well as those of chronically overweight people, in a new way. To this day I suspect that obstructive sleep apnea may play a large role in the obesity of many people who do not even realize they have this problem.

My first attempt at using the CPAP failed. With as much obstruction as I had, I was restless and uncomfortable wearing the equipment. In addition, even at its highest settings, the machine just wasn’t that effective at treating the apnea. We proceeded with the invasive internal nasal surgery—a repair of the nasal valve collapse, nasal septum (septoplasty), and resection of the hypertrophy of the broken nasal turbinate bones, which also included the insertion of an eye socket implant to secure an opened airflow (“Ouch!”). All of this poking and prodding, to my dismay (and without forewarning) resulted in a very stretched nose. Who knew noses were so elastic?  It felt as if they had placed my nostrils in stirrups, stretched them behind my head over either side of my ears, and left them there for a few weeks.  All of this special attention left my nostrils and sinuses opened wide enough to give me the oxygen I still can’t feel, and enlarged my nose permanently to approximately twice its already generous size.  The luck just keeps on coming.

At the end the surgery and recovery process, the doctor seemed elated with what he characterized as an 80% improvement. Unfortunately, a remaining obstruction appears to be in my throat, and after further polysomnography (more sleep studies), diagnostic laryngoscopy, nasal and pharyngeal function studies, a second surgery was recommended.

By this point, I had to agree with the treating ENT physician’s words. I had been through enough. Also by this time, I had  benefited at last from the further treatment of superior endocrinological and extensive physical therapy intervention. I was feeling overall so much better in every way that I just wanted to at least temporarily forego any further surgery. The doctor said he felt that was a smart choice. This made the CPAP the only alternative. Yet, he said that because of the success of the internal nasal surgery, I would not need the air pressure on as high a setting and that there was still a chance that in a few months with the machine, my apnea could completely resolve itself. I don’t know if he is just giving me false hope or not. Lord knows we all need a little dose of empirical hope now and then. I basically just cooperate with the treatment plan, as I continue to seek full and final recovery.

So today (going on seven years post-injury), it all comes down to one appointment for pickup, one gallon of distilled water, and one surge protector. Then off I go to the land of somniferous bliss—of increased energy and vigor, restful R.E.M sleep, and perhaps a little lucid dreaming…all the while looking only a wee bit scarier than I did in my trip-over tight mermaid-style dress, fake nails, gothic makeup, and long Morticia-style black wig that I so enthusiastically donned one Halloween so many healthy sleeps (and nightmares) ago.

morticia's dress

Identification and Survival — How Scrapbooking Saved My Brain

online card example

Part 1.

I’ve been watching CBS’ 60 Minutes most of my life, but I missed last night’s interview with Liam Neeson, because I was busy cooking for my family.  The minute I learned that Neeson was the guest, however, I actually felt relieved that I missed the show…then immediately began to breathe rapidly, feel slightly anxious, unwillingly revisiting the panic I felt when his wife, Natasha Richardson, died five years ago from Traumatic Brain Injury.

At the time of Natasha Richardson’s death, I was unable to cook.  I could no longer follow a recipe, because of my own Traumatic Brain Injury.  I had trouble reading and I had trouble following things in a sequence.  I couldn’t process most information, certainly not automatically or without delay.  I also could not cook extemporaneously, as I was accustomed to doing, or even stand for extended periods of time.  I had actually given up trying to cook or really even wanting to.  At that time, there were many things I no longer could do, and I had given up even caring; because in many ways, I was still fighting for survival.

In March 2009, I identified strongly with Natasha Richardson’s story.  Richardson was a mother and 45-years-old when she received blunt force trauma to the head, and I was snow sports printer's traymother and 50-years-old when I received the same.  Like me, Richardson reported being “fine” shortly after her injury.  Like me, she also refused medical care initially, and then tried to resume her normal activities.  Like me, the full impact of her injury took time to surface; and as in my case, the subsequent swelling in her neck and head, as well as the bleeding in her skull and brain, all impaired her communication skills.  For each of us, this event changed everything.  How I survived and she did not is still a mystery to me to this day.

At times I wonder if not going to the hospital is actually what might have saved me…though I would never advise this to anyone.  In fact, I feel the opposite:  Do not hesitate for any reason; always go immediately to the hospital.  Do not wait, as I did, until a doctor insists.  Not that you’ll be thinking…you’ll more likely be groggy and uncomfortable, perhaps even combative and crying, yelling and screaming as I was (which graduation bannerare all classic symptoms of closed head injury).  So I might amend this to say that if you are the person accompanying a person who suffers a blow to the head, insist on calling an ambulance. Don’t argue with them about it, just do it. The injured person very well may need to receive oxygen, at the very least; but they probably won’t know it, and will most likely thank you in the end.  Just be safe, and call for emergency help.

Natasha Richardson’s family is now left to tell her story, but because I somehow miraculously survived, I am finally trying to tell my own.

spring bouquetkids' birthday cardFive years after Natasha Richardson’s death and nearly seven after my own ordeal, I am back at last to cooking again.  Yet I am still uneasy when I recall her story.  I am still squeamish about watching a television interview about it.  I don’t really like to relive the feelings I felt and the thoughts I thought when I was working hard to recover from my own Traumatic Brain Injury.  It is a bit of a burden to carry, knowing how close one came to death.  And having survived is not always filled with rejoicing. There has been a lot of suffering and chronic pain, endless medical care, and far too much negative change–all of which was completely against my will.

Still, what is also interesting (and what ultimately matters most to those who live) is what a person does, not only to survive a life-threatening condition, but also to endure it.

Part 2:

Inspire cardWhen occupational therapy failed me one summer, one of the tasks I discovered on my own that was exceedingly helpful was scrapbooking.  It was something I could do that was analogous to the kinds of tasks I enjoyed in my job as a professor of English. It allowed me infinite opportunity for invention and hours of creativity, which I had regularly practiced in my reading, lecture planning, assignment making, and discussion leading.  It necessitated a vast variety of materials, new skills and tools, all of which provided a new vocabulary, and consequently a new perspective, which was also at times mathematical.

IMG_1231In addition, scrapbooking stimulated my weakened memory as I sorted through old photographs, at times of events of which I now had no recollection (which was completely unlike my old brain that was detail-oriented, effortlessly remembering dates, as well as what everyone wore and said).  Scrapbooking also provided endless trials of where I put whatever I was using or needing to use.  In fact, I often spent more time looking for things I just had in my sewing cardhands or retrieving things I was certain I put in a particular place, than I did actually crafting.  This was useful, however, because my injury left me deficient in visual recall, and I needed at the time to work on this skill probably above all others.

IMG_3273For me there was a natural progression from scrapbooking to paper crafting, where instead of celebrating and documenting experiences, I created gifts for others and for occasions that celebrated and honored them.  The flexibility of paper crafting was especially gratifying to me as I worked on tags, cards, author's printer's trayprinters’ trays, banners, books, and more.  Really, there is no end to the things one can create with both mediums, but to a writer/technical writer, there really isn’t anything more fun than working with a lavish array of colorful pens, papers, and possibilities.  It’s all in its own way very poetic, and not at all devoid of linguistic competence.

teach love magnet

Because teaching college English did not permit excess time forwall hanging exploring hobbies beyond writing, the opportunity for me to dabble in this new endeavor became a valuable experience at a time when nearly everything else that mattered to me was uncertain, or at the least had to be put on hold.

friendship cardNot only did I learn a good deal by paper crafting, which also helped me to rebuild cognitively while developing new neural pathways, but crafting also helped me to heal further in other valuable ways, including spiritual and emotional.  It was something I could complete when I generally felt worthless or otherwise non-productive.  It was something I could enjoy in a quiet, focused environment, when other sensory 14 ways to share your heart with the world bouquetinformation often felt crowding or even overwhelming.  It was something, during short reprieves of chronic pain, that I could do that left me close to my bed for rest graduation cardwhenever I was overcome by fatigue.  And crafting gave me something to plan and to dream about, as well as anticipate.  Above all, I enjoyed the prayful experience of holding in focus the person and the relationship I had with the person for the duration of time it took to craft something for them.  In this way, crafting was a calming meditation of positive thought and influence, something that inherently brought me great joy.  It never mattered to me that it was joy typically greater in proportion than that of the recipient’s.

Scrapbooking, unlike poetry, generally has the appearance of being easy to accomplish,Mother's Day card when in fact, it can be quite tedious and time consuming, while also requiring tremendous patience.  Poetry, if it is good, often looks more complicated than it is—more arduous to write than it actually was.  This is not to say that writing poetry is easy.  It is just that the two arts are not generally seen in the same light, when my experience shows that they might be.  In an upcoming post, I will explore the experience of writing poetry during recovery from head trauma.

 

_________________________

© Debra A. Valentino, all rights reserved.

The Olympian Task of Cognitive Rehabilitation in ATBI

olympic skiierThere’s nothing glamorous about having a head injury.  Likewise, there’s nothing glamorous about having had a head injury; or for that matter, about writing about head injury.  Because of its mysteries and its stereotypes, head injury doesn’t elicit the kind of compassion or sympathy that cancer or other illnesses engender.  Nor does it enjoy the popularity or accolades of, say, being an accomplished musician or developing a new invention.  People don’t like to read about head injury, let alone talk or think about it, primarily because head injury is negative and uncertain, and in its way, intimidating.  In general, people don’t like to think about unpleasant things that seemingly don’t affect them.

At best, closed head injury is typically reduced to ignorance and unknowing, an intangible illness that most like to make sophomoric jokes about.  No one much understands what really goes on with closed head injury, and because it affects cognition, people like to reduce it to a type of insanity or reduced I.Q., of which it is neither.  This misconception isn’t always the fault of ignorance.  It’s easy to misjudge what one does not understand.  Even doctors disagree on the prognosis of the head injured; so, there is unfortunately enough confusion and debate to confound just about everyone concerned.  Yet most people are not concerned about head injury, unless and until this sort of tragedy befalls them, as it did me the year I turned 50.

When you are the unfortunate person experiencing the effects of closed head injury, you are given no choice but to endure it…and it is an unimaginable anguish that one can only hope to convey, if one is as lucky as I was even to survive it.  Indeed, we hear all the time about those who die from blunt force trauma to the head. When I was suffering the early effects of my injury, I never envisioned another day of writing, or especially a new day of blogging.  It took all my energy just to breathe and survive the physical pain.  And that went on for years.  In many ways I feel I now must write this blog, solely because I can.

However much energy recovery takes, recovery from head injury is not seen by most as being anything as magnificent as the focused endeavor of, say, playing a concerto piano piece, publishing a book, or of gliding through snow and air like an Olympic skier. Accomplishing recovery from head injury is generally not even rated up there with the less grandiose task of washing and waxing one’s automobile.  In fact, full or even mostly complete remediation from head injury is not even always believed, even when we witness it. Despite all the bias that exists against head injury, and in its own metaphoric way, healing from acquired traumatic brain injury (ATBI) is all these things and more.

Recovery from acquired traumatic brain injury does not lack focus.  The person has to work and fight hard.  In some ways, the battle is equally arduous as that of the olympic trainer.  While there is no piano or ski slope or car to wax, the head-injured person competes against the dying brain, the brain that controls every thought and every movement…the brain that is torn up and subsequently moving toward shutting down.  In this way, both the person’s will to endure and the brain’s ability to rewire are as phenomenal and as Olympian as the longest tenacity and the finest precision we can envision.  We can and must be grateful that this is the case, while not underestimating the seriousness, as we know many who are not as fortunate, through no fault of their own.

So, how does a person begin the business of cognitive rehabilitation after acquired brain injury?  First of all, as discussed in an earlier post, one has to realize that doctors and healthcare alone cannot complete the job of cognitive rehabilitation.  Nor does the organ, the brain, solely repair itself.  The patient herself must participate, and indeed initiate some of her own measures.  And when she or he is unable to do so, someone who cares needs to be willing to step in.  There are always important and valuable rehabilitative measures available to both the injured and to the caretaker(s) who may need to advocate on the patient’s behalf.  In order to reach maximum rehabilitation, one must not hesitate to avail oneself of these.

I am fortunate that somehow in my cognitive demise, I was myself aware of this need.  Even when I was in too much pain to lift my head (or body, which felt equally broken), I somehow knew that I must work my brain.  Something compelled me to listen to music, which I could hardly put on for myself.  Something told me that even though I was off work on medical leave and unable to read without crushing fatigue, I could still write a poem.  Something drew me to online community that kept me connected socially when, due to the debilitating physical affects and compromised speech and communication skills, I rarely left my home–or actually, my bed.

In the next few posts, I would like to share some of the activities I sought that ultimately turned the darkest years of my life into some of the brightest and most nourishing.sparkle

@ Debra A. Valentino, all rights reserved.

The Brain is a Heart

It’s February, and there’s lots of moaning and groaning going on about this worst winter for many (“worst” as in snow and more snow).  Also with winter comes the ensuing cabin fever, and sometimes, the downright blues.  And who could avoid them after a day like this past Sunday, when we woke to devastating news of the heroin overdose of acclaimed actor Philip Seymour Hoffman, then suffered one of the worst football contests in Super Bowl history (Seattle Seahawks 43 over Denver Broncos 8).  How to process such a shocking loss of a remarkably talented man; although, with a blowout like that, at least for once we didn’t have to witness the further proliferation of NFL concussions.

There’s also on the horizon all the griping about Valentine’s Day by those who are jaded or have otherwise not been lucky in love.  Some people just hate Hallmark holidays, but this is America, damn it.  Pointlessly probably, I want to say, “It’s February!  The season of hearts and flowers, and (squeal) love poems.

I may want to tell you my whole life history of all the fun and romantic things I’ve done to celebrate love, which began in my childhood home as we joyously exclaimed, “Happy Valentino’s Day!”  …Of all the fun things I’ve got going on now in preparation.  That would be fun to write about, but in light of all we are facing, and instead of all the boycotting that might go on, I need to write about what matters more to me these days (or at least as much).

I say, why not love something we all truly should celebrate:  OUR BRAINS!   Yes, yes.  I hereby declare February “Love Your Brain” month.

Your heart is the seat of your soul, and it is an incredible organ worthy of much attention, but your brain, your brain…I’m telling you, people, it really is all about your brain!

Your brain is the most amazing organ in your body.  It literally controls the functioning of all your other organs—including the breaths you take.  You would be amazed at what becomes affected when your brain stops working optimally…a whole host of matters from muscle atrophy to slurred speech to severe fatigue.  And you would also be amazed at how the brain works to heal itself and all it can accomplish.  Both lists are greater than you can imagine.  But we can’t count on our brain’s incredible ability to rewire itself.  We have to pay attention to what goes on, because even if we are never impaired, one of our loved ones certainly might be.

Your brain is also responsible for some 70,000 thoughts a day.  Like most things, we don’t appreciate what we have going for us neurologically.  We waste time worrying about our body size and bankbooks, when what we really should be doing is treating our brain better and celebrating the phenomenal entity that is our brain.  Every action, every thought, every movement:  Your brain, your brain, your glorious brain.

Case in point, addiction is a disease, and when the diseased brain takes over, people make poor choices that can cost them their lives, as is the case with so many young people and too many Hollywood movie stars.  Acquired brain injury is not the same thing at all, but some of its effects are often confused by those who are uninformed or have been fortunate enough not to have experienced them.  I say fortunate enough not to have experienced, because really, brain injury can occur at any moment in a multitude of situations.  No one wants to suffer a brain injury; yet truly, anyone who is alive is at risk.  So, as long as you are healthy, you really should try not to complain.  Venting is good, so long as you keep in mind the bigger picture.  What’s a little snow when it affords you the opportunity to read and think? Use your brain to stay safe, to occupy your time, and to cope with unpleasant conditions.  I guarantee, if harm comes your way, it will be your brain that works hardest at getting you to survival and safety.  It will also be your brain that gets you to decide to stay off the streets, or to help someone who is in distress or in need.

We have so much to learn about both the healthy and the diseased brain that we can’t afford to waste time bemoaning bad weather or an unreceived box of chocolates, or anything else we think we want but don’t have.  We simply need to get busy understanding.  With knowledge comes change.  And oh, how we wish we could have saved so many of the precious souls we lost too soon to these conditions.

Let’s start our work now; let’s find out how we can prevent this epidemic of heroin and drug addiction from continuing.  Let’s learn how we can help those who suffer physical disabilities, and those who suffer from mental illness. Our brains are at the ready.  I know our hearts are in.  But it takes our brains, too.

So, please, spend this February loving and learning.  Study some brain science.    Learn about how your brain functions and all that it accomplishes.  Most of all, think happy thoughts and be grateful.  You are alive, and if you are here, you are reading.  I can’t think of two much greater things.  Love may break your heart, but living and reading will fill it.

So exclaim it with me, “I love my brain!” 

Be love.

Take care of your body, and be good to your brain.  

 

————————————

© Debra A. Valentino, all rights reserved.

On the Vast, Open Road

It really seemed we might never leave for this road trip.

This is what head injury travel feels like.

I am still struggling with the ninety percent obstruction they found in my nasal passages before my sleep study, which won’t be able to be fixed until we return.  It’s very uncomfortable, and the lack of oxygen makes me sleepy and weak, and ultimately restless, which seems ironic given all the sleep I seem to be getting.  Once I finally packed, I needed to shower, and then surprise–nap again!  Plus, Rich was frustrated that we lost the bid on a condominium near my parents’ village.  Sick of house hunting, we had taken the leap and found a nice place, reasonably new and newly painted and carpeted, albeit much smaller than we originally considered.  Rich and my father were especially excited about it, and Rich wanted to pay full price, but I discouraged him because it was a bank owned property.  Something about their delays just didn’t seem level.  In the end, the other guy, a fireman, bid full price, and we lost it by just a couple thousand dollars.  I was good with it, because even though the location was perfect—in the heart of town, and right next not only to the fire station, but also to a large library–there was virtually no storage and only a one car garage.  Our search will need to continue when we return from this trip, but then the holidays will be here.  No one wants to house hunt during holiday season, let alone show their home.  Who ever thought “retirement” could be so stressful?

I plan on calling my parents every day while we are gone, just to see how they’re doing, and hopefully keep them from dying of boredom.  My dad gets fidgety in the house all day, and my mother is for the first time ever feeling a little vulnerable to be left alone for long.  I am even worrying about leaving our dog, feeling so horrible about it I snapped a photo as Rich left for the kennel with him.  I’m going to miss my baby (dog) Romeo so much while we are gone.  I don’t know what is wrong with me. Sometimes it feels like I went from Wonder Woman to Wonder Wimp.  Travel is always difficult on me now, no matter what we’re doing or where we’re going, whether by train, plane or automobile. My neck and spine (not to mention head) are still tender from the (severe) whiplash, arthritic already, and the vehicle and road vibrations still cause fatigue and a low-grade sort of nausea.

Rich, however, wanted to drive to Aspen, Co, our final destination, because he enjoys seeing the USA from two-lane highways, taking short off road excursions whenever we pass places of interest.  The post-traumatic anxiety I get from Rich’s driving, or really just from being beside trucks on the highway (all that steel) keeps me intermittently panicked, whether I arouse from sleep or am wide awake.  It is all stuff I never before had to cope with, and the coping detracts from the pleasures, which is why I sometimes dread traveling.  Did I mention how difficult it is to stay awake in a car, and how equally difficult to actually reach REM sleep?  I’m not as bad as I was, but there is still a good deal of a sort of semi-consciousness–enough to keep me reminded of what I’m trying to forget, anyway.

Our first stop, long anticipated by both of us, included a trip to Prairie Lights Bookstore in Iowa City, near the University of Iowa.  Since we were nearly a day off schedule, we couldn’t browse leisurely as we had planned.  We still managed in our short stay to spend well over a hundred dollars, and even picked up an audiobook to listen to on the drive, Some Assembly Required by Anne Lamott (which turned out to be a good decision).  Not all authors read their works in a way that compliments their text, but Anne Lamott’s steady cadence, coupled with her son Sam’s interspersed excerpts in his own voice, made for compelling listening through the lush and rolling farmland of Iowa.

The fall foliage along the way was far more colorful than we imagined possible after this summer’s record-breaking drought.  As we traveled the first four hundred miles, and certainly by the time we left Prairie Lights, we both began to experience a transformation nearly as magnificent as the beatific site of those hardwood trees blazing their glory. Suddenly we were smiling again and light-hearted, the way we were pre-fitness-distress, pre-post concussion syndrome, pre-house hunting.  Our thoughts, our senses, our hearts began to fill with images we wanted to take in, images we longed to behold.  Our souls had grown absolutely weary, but this trip, the trip that very nearly didn’t happen, was off to a perfect start.

Things only got better when just a few doors down from the bookstore, we happened on an Indian restaurant named Masala.  No one was in the restaurant, but we took a chance and stopped in for an early dinner.  I ordered tea, which came to me as chai tea, an acceptable variation.  Looking over the menu, I paused at Saag Channa, a vegan and gluten free dish of spinach delicately cooked with chickpeas.  Then I saw Vegetable Jalfrazie, fresh seasonal vegetables sautéed in spices, ginger and garlic.  Rich was still studying the menu when I located still a third possibility, a rice specialty, Lamb Biryani, a Basmati rice cooked with pieces of lamb, herbs, spices, and nuts.  I couldn’t taste the nuts (if they were there), but, upon our waiter Bilal’s recommendation, Lamb Biryani won the competition nevertheless. When Bilal came to take our order, Rich also asked him for guidance, more specifically what their most popular dish was, said in a sprightly narrative, “When I go back to work on Monday and tell everyone I ate at Masala, they’ll say, “Oh, did you try the ________?”  Bilal smiled jovially, saying in his lovely accent, “Okay, gotcha!” He proceeded enthusiastically to solve the word puzzle promptly by eagerly flipping menu pages and pointing to the Chicken Tikka Masala and Malai Chicken (chicken barbequed in a clay oven and cooked in a rich and tasty sauce), which turned out to be both Rich’s choice and the most delectable authentic Indian cuisine either of us had ever tasted.  With our meals, Bilal brought Garlic Naan, a leavened bread stuffed with garlic and baked to perfection, as well as some Raita, which he said was a yogurt for my rice.

Bilal was actually from Pakistan, “But it’s right next door,” he said in a charming, boyish way (meaning, to India).  He was an undergraduate at the university, wanting to live and study abroad, which led to an interesting analysis of diverse cultures.  As I listened to Bilal, he reminded me of my own son and a few former students, expressing a familiar lamentation that seems to be shared by many intelligent young adults.  Or perhaps it’s one that has been experienced by the generations, the anxiety that popular culture coupled with capitalistic ideals just leaves them feeling disillusioned.  This exchange paralleled our nourishing and flavorful meal, fresh and exquisite to the palate.  As I ate, it felt as if a few vibrant folk dancers had taken up residence in my mouth, heels popping and skirts swirling.  The fullness of it all made me feel almost as if I’d been airlifted back to the life I’d lost five years ago.  If life were a story, I might have lingered there in Masala’s for another chapter or two.

We drove another 250 miles to Council Bluffs, IA, then left the next morning for Scottsbluff, Nebraska.  Iowa, with its expansive, lush and rolling farmland was so beautiful, in contrast to the desolate, flat prairies of Nebraska, so uneventful that even the trains didn’t move.  I slept most of the time Rich drove, but not by choice.  I couldn’t seem to stay awake, although I was actually doing better than the day before. Rich’s fascination with the sprawling vistas made the trip pleasant, and we would enjoy a good laugh on me when we reached the Windlass Hill at the Ash Hollow State Historical Park in Lewellen, NE.  “What were you saying about Nebraska being flat?, Rich chided.  Here the terrain suddenly exploded in to hills and hollows that left me breathlessly saying, “What?” and “Wow!”

looking west from Windlass Hill
at the wagon ruts on the Oregon Trail

We walked up a steep path to the top of Windlass Hill to view ruts made from the pull carts and Conestoga wagons. Standing in the path of history, forged by the pioneers well over 150 year ago, we marveled over the long, rugged trek they somehow completed.  The desolate and dangerous Oregon Trail, once only an idea, was sprawling before us.  Somehow, I didn’t find Nebraska boring anymore. Also on site was a replica of a sod house, which the pioneers built for shelter out of grass and sod.

replica of a pioneer sod house
on the historical site at
Ash Hollow

Only two trucks and one car passed on the entrance highway in the hour we spent walking in sunshine and gentle breezes.  It was a phenomenal experience, and I loved listening to Rich relay all the history he learned as a boy, as we enthusiastically explored the area.  Plus, the fact that I stood there breathless from walking up one steep hill made me think of those pioneers carrying bags and sacks and all their belongings, hungry and tired, thirsty, and perhaps even injured also, and those thoughts humbled me.  I really have nothing to complain about.  I may not have been a pioneer, but I have survived my own sort of Oregon Trail, and for that I rejoice.

 

Celebrating Tough Journeys
on the Oregon Trail

 

 

© Debra A. Valentino, all rights reserved.

 

On What You’ve Got to Do

packed at last and at the airport, four years post injury

One of several unanticipated changes that happened while I was recovering from traumatic brain injury was that I developed an utter and deep distaste for packing. More generally, when I was much more ill than I am now, one of the major skills I lost was the ability to organize.  This showed up in a myriad of activities, but above all, this cognitive deficit made packing for all excursions a much dreaded nightmare for me.  Even if all I needed was an overnight bag, it would take me hours, in some cases days, to get my things together.  It was hard to plan, hard to think, hard to judge, and mostly, hard to have enough stamina to get the job done.

Eventually, packing a suitcase became so difficult that I seriously needed assistance, as I did even with dressing, particularly when it meant going off to work.  The choosing and arranging was made even more difficult by two things in particular.  The first was that the picture making mechanism in my brain, visual memory and recall, seemed to be compromised.  I had a lot of trouble with this as I would place items in their familiar places, but somehow not be able to locate them when I went to retrieve them.  On more than one occasion, I lost things of value–my engagement ring, a new camera, another favorite ring that I still miss today. Once, I lost my keys, and it took me over a year to find them.  Another time, I somehow locked myself out of the house, and had to call a locksmith to get back in.  Before the injury, I was the one who remembered not only for myself, but for everyone in my family as well.  I wasn’t even the type who had to check and re-check whether I locked the door or turned off the stove; I remembered vividly doing nearly every action.

This problem was particularly confusing because no one alerted me that this change could happen. In fact, even after reporting several times to various health professionals that I lost various items, I never did receive a direct explanation as to why.  So there I would be time and again, laying out a scarf or a sweater to take on a trip, finding myself looking all over the house for where I had placed it.  Sometimes it was right in front of me, but my brain either didn’t remember or didn’t take the snapshot that helps us retrieve images.  I can’t give you a more scientific explanation other than this, for this is as I remember it finally explained to me by a neurologist.  

The second thing that made packing for a trip so difficult was the fact that I kept going up in size.  I would no sooner give in and purchase larger clothes that I would outgrow them. Once the affects of post-concussion syndrome set in, I just really didn’t get out of bed or off the couch much, whether I ate or didn’t eat.  When it came to having to pack, I just struggled, and sometimes the sheer frustration of it would overwhelm me to the point of crying. Usually in puddles of clothing that no longer fit me.

I had gone from actively planning and organizing daily, to not really being able to plan or organize at all.  Yet, it wasn’t the contrast between who I was and who I became that upset me the most.  It was the actual fatigue the activity caused that upset me the most.   I might start out focused, but the process would absolutely wear me down.  By the time I was ready to leave, I couldn’t stay awake in the car for twenty minutes without falling asleep.  My brain had such little stamina, and this always affected my body, and still does. And, of course, I almost always forgot something I meant to take.

It’s hard to admit that despite all the progress I feel I’ve made, I’ve still been in bed all this week.  I’ve just had head pain that keeps me down, and felt more tired than is even usual. Usually, I can’t sleep, but lately, it seems I can’t get up, and now, even my stomach hurts.  I once had an iron-clad stomach.  It’s this weird avalanche of feeling lousy almost all the time.  I don’t recover quickly, and I don’t have that power-through it ability I once took for granted.  I’m sure it is all the stress I’ve spoken of in earlier posts, but I used to be a stress machine…and nevertheless, it’s time for us to leave for a trip, and I haven’t even started packing.

Today we were blessed with a strong, steady rain.  The kind of rain that just begs you to curl up with a good book.  I have been reading nearly all day today, albeit mostly with my head on a pillow.  It finally occurs to me that I have developed an avoidance to packing, because packing and organizing are truly not nearly as difficult as they were for me, say, just six months ago.  I could do it, and I should do it, and I know that, but I don’t much care.  This is very unlike me–not to care–about anything.  I am generally a person who always cares way too much–about everything.  Now, I just want my book.  It feels so foreign and so selfish, but so much easier than the struggle.

One of the first things I learned about frontal lobe injuries is that a person tends to lose her motivation.   Still, I believed for a long time, in spite of the theory that frontal lobe damage causes poor motivation, that my motivation had not been affected at all.  Compromised, perhaps, but surely not gone for good.  After all, I have a list of accomplishments to prove I am still very motivated.  This blog, for one, is an attempt to motivate further healing.  I am writing again.  That takes effort and time.  It’s certainly not a lazy person’s pastime, although it does pair well with my fatigue and lethargy (which might be originating in part, doctors theorize, from the nasal obstruction and current lack of optimal breathing at night, which I am waiting eagerly to have resolved).  Learning how to navigate this blogging software is not exactly for those who lack motivation, although I’m just keeping it as basic as I possibly can for now.  The point, as I said, is to write.

Every day, I have to do this constant dance of pushing myself beyond what is comfortable. “Comfortable” for me could be to do nothing.  Like not packing.  Instead, I fill my time with activity that other, completely healthy, people avoid…reading, writing, worrying.  I’m not sure if I’m just wanting to assess myself as normal, or whether I’m actually being extraordinary.  All I know is that I somehow have to keep going.

I am worried about leaving for an extended trip because my parents are elderly, and my mother has terminal cancer.  She was not well yesterday, and the nurse said she was dehydrated.  Today she is better, but I can’t help worrying.  Two of my friends lost their mothers just this week, and now both of them are without either parent.  I still have all that ahead of me, and grief is not something that’s easy for anybody.  I’m worried I will be worried the whole time we are away traveling.  I keep trying to psych myself up to let go of worst-case scenarios, to stay in the moment.  This is partly what trauma does to a person.  It speeds everything up that once was seemingly well-regulated.

me, unpacking and organizing my son’s first dormitory room, two weeks before the accident

I am so different from who I was.  It would feel as if I have lost all my armor, except that I have gained some, too.  When going over cognitive testing, the neuropsychologist told me I could still write a book if I wanted to, but that it would take me longer to write than it once would have.  I knew he was correct, because even my writing has changed.  I recently looked at a journal entry written years before this accident, and the writing was so sophisticated and so beautiful, it made me weep. One doctor said it would be interesting to track the changes.  The thing that resonates with me is the approach another doctor, the neuropsychologist, took when reviewing my test results, and the irony those words hold even now:

“You have to pack your own suitcase,” he said.

I took this to mean that my recovery depends largely on me, my attitude, and what I do, or in this case, don’t do.  I am going to have to work for whatever I want now, for everything I want–nothing will come easily any long.  I’m going to have to be the one to decide–not doctors, not God, not my husband.  How and if I recover is largely up to what I push myself to do…and I’m going to have to push myself even when I don’t want to do anything.  I was always a hard worker, but now nothing is going to come easily, the way some things once did.  I’ve got to get this through my head, and keep starting over, no matter how long it takes.  I don’t like it.  I’m angry I got hurt so unfairly, so randomly, but there it is.

For certain, I am nobody’s superstar, if ever I was one.  Still, I haven’t given up.  I’m writing.  And I’m writing here where anyone can see.  The good, the bad, and the ugly.  Because even though I now hate to pack and sometimes even to travel, I still want to write…

I’m still that little girl who put pen to paper in her little room so long ago, long before she knew a thing about where she was going, what she would become, or what could happen to her along the way.

————————————

© Debra A. Valentino, all rights reserved.