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The Shame We Don’t Discuss

three in autumn

The Shame We Don’t Discuss

Fatigue is a complex condition that is sensitive to several influences, not the least of which include stress and anxiety.  A person does not have to suffer the intense level of anxiety brought on by an illness such as cancer or by conditions such as post-traumatic stress to know the distraction and sometimes debilitation anxiety can produce.  Nearly all humans experience circumstantial stress and anxiety to some degree. Stress and anxiety also worsen compromised health conditions, creating additional complications.  The problem intensifies when a person addresses such discomfort with addictive substances, which ultimately develop dependency.

Early on in my convalescence, I noticed the lack of information nearly everyone had surrounding head injuries. It also wasn’t hard to miss the high level of discrimination that matched the ignorance.  The level of processing and tolerance it takes to understand people’s biases just compounds the stress most survivors experience. While each injury is unique, closed head injuries do not typically lead to insanity. stupidity or even aggression, as is often characterized.

People with closed head injuries can still be cognizant and perceptive, despite compromised interactions with others.  Most brain injured find themselves laughed at and patronized, even though they can still distinguish many nuances of thought, and genuine concern from criticism.  With respect to the sophomoric ribbing that typically accompanies the condition, one’s illness is never a joke–unless you’re the one not suffering it.  Ironically, one might ascertain that the common misconceptions forced onto the victims might more persuasively be reflected back onto the unenlightened.

Fortunately for me, I learned at a young age the value of calmly addressing both the anxieties of myself and others.  From the beginning, this premise influenced my response toward the effects (that is, once I broke my own initial, and realized I wasn’t going back to work the next week, as I tried to do).  I never hid what had happened to me, nor did I or do I carry any shame.  I know, perhaps better than most people, that what happened to me can happen to anyone. The Center for Head Injury Services states that in the United States, a head injury occurs every 15 seconds.  According to the Brain Trauma Foundation, traumatic brain injury is the leading cause of death in children, adults and the elderly. If you have never experienced a serious concussion, you want to keep it that way, if you can.

book cover patrick kennedyWith these thoughts in mind, I recommend viewing this Sunday’s 60 Minutes interview with Patrick Kennedy about alcohol, mental illness and his family, as outlined in his new memoir entitled, “A Common Struggle:  A Personal Journey Through the Past And Future of Mental Illness and Addiction.”

Although my struggle has not been exactly the same, there are enough overlaps among the stigmas.  As Kennedy points out, the problem centers around what we all know, but are reluctant to talk about.  His coming forward has caused a rift in the Kennedy family, he says, because they “do not want to be associated with a medical illness. That should tell you something about the shame and stigma that still surrounds these issues.”

Similar to concussion or perhaps more so, all individuals and families are in some way affected by mental illness or addiction, if only secondhand through their relationships with those who share the curses.  Especially notable is what Mr. Kennedy has to say about the shame and impact that accompanies these lifestyles, and how it is time to stop hiding from what makes us uncomfortable, and start discussing what we can do to make things better for all concerned.

With so many mentally ill and addicted people unwilling to receive help, it is often up to friends and loved ones to offer support and encouragement…or to suffer the frustration of not knowing how to help.  Kennedy also emphasizes that “there is hurt to keeping this secret; if you don’t talk about it you’re in trouble” in part, because of the delusional nature of these illnesses.

What about you?  Here are some journal questions to explore:

  1. Are you open to discussing your problems with a trusted friend or family member?  If so, who would that be and why?  If not, why not?
  2. If you are not able to do #1 above, what makes it difficult?  How did this come to be, and how can you change things so that you are freer to speak authentically about your feelings, needs, and concerns?
  3. If you are not able to discuss problems, what do you to cope with the stress and anxiety?
  4. Is there anything you feel you need to help you improve and move toward better, more fulfilling health?  If so, how can you secure these things?
  5. If your health doesn’t feel compromised, what about your work, your social life, your relationships?
  6. Are you as healthy and as happy as you want to be?
  7. Write a script of what you want to say to yourself or someone else about a feeling or a need.  Include others and what you imagine their responses would be.
  8. Ponder some health goals for the coming year. Include mental, emotional, psychological, and spiritual health as well as physical fitness.

Following is some video coverage of Patrick Kennedy’s call for awareness:

http://www.cbsnews.com/videos/patrick-kennedy-shares-secret-family-struggles-in-a-common-struggle/

You can see the 60 Minutes interview from Sunday, October 4, here:

http://www.cbsnews.com/videos/patrick-kennedy/

This is Day 6 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

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

Life from Both Sides

“So many things I would have done, but clouds got in my way.”

Yesterday, I ran into a man I have known since I was 18 years old…that’s four decades ago. It brought back a torrent of memories from a life that wasn’t always easy, but nonetheless has changed in every way since.

I wondered if seeing me had half the impact on him that seeing him had on me.  I doubt it.  Still, so many memories swirled through my mind…did he remember any of them? Surely he remembered some. We were both dignified in our meeting, never showing to any of our family members the intersections our lives had passed. All these years later, would our families even care anyway? I tried to tell my father, who happened to be with my husband and me: “Dad, I’ve known that man since I was a college freshman. He knew both your sons, too,” I said, wondering what thoughts might have crossed this other man’s mind as he sat across the restaurant from the father of three kids he generally liked, respected–you might even say to some extent, admired.  “You ought to go to law school,” this man once told me.  “I thought of that,” I answered, “but my brother’s a lawyer, and he’s an asshole.”  We both laughed–as did my dad when I relayed this story at breakfast.  Because, you know, lawyer jokes.

For me, even if I had been this man, such a meeting would have been a meaningful encounter.  I mean, if nothing else, it was like “WHOOSH–Here is your life, fast-forwarded.”

I cannot say that the meeting wasn’t equally resonant for him; I just do not know.  I would never now invite such thoughts from him, nor have the opportunity to hear them. I might have changed this in our meeting, but I didn’t.  It actually did not even occur to me until he was preparing to leave, knowing this could be the last time I ever see him, which was a thought I really did not want to entertain. More precisely, I suppose I already knew that some things are best left in one’s memories and in the past.   I’m comfortable with that, although I like this person.  If things had been different he would surely still be my friend…I mean, actively, not merely by consequence.  This chance encounter certainly has me thinking some about change…about time.

All this month, I have been participating in a photo challenge called April Love, and lo and behold, we are Screen Shot 2015-04-28 at 11.28.20 AMalready on Day 28.  Each day we are given a pre-set photo prompt, provided by everyone’s favorite online creative goddess (or at least mine), Susannah Conway. We take or find a photograph and then share it either on Instagram, Flicker, or Facebook.  Most of us use our own original photographs, and sometimes we share personal details from our own lives.  It’s amazing how one photograph can stir so many thoughts and so much dialogue.  It’s amazing how much fun it is, how the creative process works.These images become intriguing prompts for reviewing one’s perceptions, but more notably they become great prompts for writing.  I have been amazed both by what they have allowed me to say and by what others have shared. As such, we are meeting people (mostly women) from around the world, and we have become a new tribe of sorts–so much so that we have agreed to continue sharing far beyond this month–weekly instead of daily, with prompts already reserved for and continuing into the next year (at least)!  It’s been a fun and enlightening experience with new, mostly unanticipated, friendships being formed and still forming.

The focus of April Love on self-love has given me much to think about with my accident (see previous posts–not an automobile accident–I was hit by a malfunctioning electronic steel door while exiting a retail store). Some things I really should blog about (self esteem, self-love, self-care–so much to say about all of that). As I continue to work to come to terms with the physical changes that that incident brought, I find some relief from my former profession of university teaching.  Teaching college English had many requirements, unlike the fully-creative life I have adopted in its place, which joyfully allows me to stretch beyond pedagogy.  Not that pedagogy is a bad thing.  I love pedagogy.  It’s just that sometimes students begged me to do some of the things I do freely now and would have done freely then, that really had no place in a college course.  At least not the ones I was being paid to teach.

When I taught, I gave my students photo prompts to write from, but they were nearly always of famous works or even of media propaganda.  The aim was to try to get them to think and to sharpen their critical, analytical and expository writing skills.  It wasn’t solely my preference; it was in line with the courses I was assigned to teach.  Students were discouraged, in fact forbidden, from writing expressively about anything personal, as the objective was to get them to look outside themselves, to see beyond their young cocoons, to find the bigger picture and to examine it intellectually, not just feel it on an emotional level.

Expository writing certainly has its place, and I don’t feel I did anyone a disservice by teaching it.  It’s a crucial step toward becoming an educated person and securing a college degree.

However.

Once a person has been broken by one tragedy or another, it is important to process and to move forward…therefore, to see things from their origins.  To look carefully from the heart and in the soul…and to see just where they land–in the mind, and in the heart and in the soul.  Simply put, not everything can be processed from the mind alone–or from the mind first.  For me, April Love encourages this vision…one that looks outward to the image, then back in to one’s perception.  While the discoveries aren’t generally political, they are somewhat social–certainly more universal than strictly personal.  In some ways, it is a catalog into the lives of women.  We aren’t solving world problems, but we are solving our own–and indirectly, one another’s.  Even more than solving anything, we are just sharing.  Sharing through the art forms of photography and language, and acknowledging the world as we see it today–which is usually much different from how we saw it at one time.

In many of our shares, there is a collective sigh.  We are all living in the moment, taking a subtle backward glance.  It is funny how relieved many of us are to leave some things in the past.  And then, too, how much of the past still warms us.  We are still learning, even from what we thought we already understood.

Today’s prompt was pedestrian enough: it was “Clouds.”  At first, I shut completely down and said I wasn’t going to participate. I’ve got nothing against clouds, but…too cliched, perhaps?  I’ve been taking photographs of clouds for years.  I thought it would be best to be a sort of non-active participant; just to read and enjoy others’ posts.  Somehow, I admit, I thought, “Ho Hum.”  That was scary…because that is not like me at all.  Instantly, my own attitude reminded me of a friend I once had who couldn’t be encouraged to enjoy the sunset. “I’ve seen sunsets before,” she grumbled.  What a horrifying stance, I thought–I certainly do not ever want to become that jaded…

Fortunately, immediately following my reticence, cloud shots from days passed moved through my mind like a slideshow.  I still thought I wasn’t going to share anything in the group, when suddenly a favorite came to mind–a gift, actually. I wondered if it would be acceptable to share a gift.  I had received this photograph from a student the summer of the last spring semester I taught.  He said he had been driving to work early one morning, saw this image and instantly knew I would like it.  He emailed it, and said it made him think of me.  The magnificence of the shot impressed me, and it meant a great deal that when he had nothing at all to gain, he still wanted to share it with me.  It let me know that I had taught him something beyond expository writing.

Here is that photograph, taken with his cell phone:

mathias' clouds

It is funny how our paths cross and how our lives play out, what we think and what we realize.  How beat up we get.  How we recover.  As I write this, the legendary singer-songwriter Joni Mitchell is fighting to recover her own health.  I have been watching the news for updates, reading online about her, watching videos, replaying “Shine” (my favorite CD of hers), and adding to my reading list her biography by Malka Marom, Joni Mitchell: In Her Own Words.

Then today, on the day I thought I would not participate in April Love as I have done all month, with the prompt being “clouds,” one of the participants shared this video.  So obvious, right? And yet, the video stopped me cold.  So many connections.  Is it any wonder we look to the clouds to see what we already know?  What could or should ever be more obvious than the clouds?  How can we possibly overlook them…in any way, really?

And that is how one spring day I went from not sharing a photograph to writing a whole blog post.

May all your Aprils be filled with love.

Both Sides Now lyrics

Additional reading:  http://www.theguardian.com/commentisfree/2015/apr/04/not-easy-to-be-joni-mitchell-fan-but-illness-devastates-me?CMP=share_btn_fb

© Debra Valentino, all rights reserved.

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.