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.

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