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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

Driving Away for the Last Time

to reupholster

The dog was with me when I pulled away. The seatbelt alarm rang from the weight of him, panting in the passenger’s seat. As I drove away from my parents’ home for the last time, the past two years whirled in my head. Then, all the comings and goings over all the years. This time, with a pickup truck full of furniture to reupholster and the console sewing machine my parents bought me for my 8th grade graduation.

How many memories I have of this same act, yet going in a different direction, with contents other than these…babies in the backseat, containers full of Mom’s homemade leftovers, the new bike rack my dad bought us to haul the kids’ bikes….It seemed appropriate that it was still dark outside, 4:30 in the morning, with not a soul stirring except the ghosts of one’s entire life.

Every single part of my body ached, not just my heart, though I wasn’t focused on the pain. It had been a surreal week of long air travel and all its implicit stressors, followed by hours and days of endless sorting, moving, and deciding, taking things out, putting them somewhere else, then dealing with many people both in person and online wanting lowered prices lower…millions of bodily movements to match a few sharp, recurring and sometimes unexpected emotions. How does a person keep from being swallowed up by all the minutiae of breaking down a home?

I kept reminding myself that it wasn’t so bad. That it wasn’t really the house I grew up in—the house where indelible memories lie. But it was the house where my cousins grew up, the house my aunt drove away from on her lunch hour, the house where on Christmas I opened the best gift I ever received (an Easy-bake oven I could not wait to try). I had plenty of memories here. After my parents moved from our house to here, my brothers and I hosted a surprise 25th anniversary party for them at this house, even as we each returned for the weekend from college. I remember scrubbing the basement steps in preparation.

They were the same stairs, later carpeted, where in my nylon-clad feet I slipped and fell, tumbling rapidly down, breaking my tailbone (for the first time). I have so many memories of these stairs that they alone probably belong in a poem.

emptied cabinetThis was also the place where I found out that my fiancé had a brain tumor. Much later, this became the house where I dressed on my wedding day. Later still, the house my baby shower was held for my firstborn. It is the house I read so many books in, both inside and out. It is also the house that one summer (while lying outside on a chaise lounge reading a book) I decided not to return to graduate school, but to go to work full time instead—a decision that changed everything for the rest of my life.  This house. The house where I breastfed my babies, and where I sat panicked at age 34 with a stack of seventeen books on breast cancer–trying to learn what it meant exactly, when the doctor said preliminary testing showed I had it.

No house really, no matter the circumstances, is safe for a writer, a scrap-booker.  I walked somberly about, taking final pictures of the hollowed rooms. As I stood with my phone camera, my husband arrived unceremoniously and I heard myself say to him, “This is the room where my grandmother died. Right in that corner there.”

pegboardAll that was left of a generation were remnants. The last of the last of what no one had  use for–no one in the family, no one at the garage sale, no one on craigslist, none of the neighbors, not evenbox any of the charities. Stuff that somehow couldn’t even make its way to the garbage: my mother’s handmade peg board that displayed the necklaces she crafted in her last years; the ornate shoe shine kit (well, the box, anyway) someone (it had to be my brother) gave my dad one year, possibly for Father’s Day; an ironing board…my mother’s ironing board.

On the walls in two rooms stood the calendars. I couldn’t bear to leave them hanging there. My dad, so fastidious about time and date, surely had others, and so had left these behind. He had written on them in his hand and now they said May 2014. Life in a sheaf of pages–just like that–and there they remained, the calendars. May 2014. Leaving them behind was like marking in time the end of all things. A family’s life. Making human life as disposable as all the stuff we accumulate. I quietly removed them, as if it was my secret. As if no one in the world but I would understand what calendars mean.

 

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All rights reserved, © Debra A. Valentino.

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.

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© Debra A. Valentino, all rights reserved.