Bits and pieces

You have heard the phrase, “One step forward, two steps back.” It is easy to picture in a two dimensional sense, but brain injury develops in a four dimensional matrix. My memory shows a glimpse of the past and I can’t process information as well, my balance improves but I can’t hear. My processing improves but my eyes can’t focus. Last week on the way to rehab, I heard a story on the radio about Pennsylvania, and my old drivers license number popped into my head. 20 329 373. Not many people know their current drivers license number, I haven’t driven in Pennsylvania since 1999. Later, at rehab, I scored lower in processing speed and attention than previously. I wrote a paragraph for my speech therapist in which I did not cover the issues of the assignment, but she went out of her way to say how well written it was. One step forward, one step down, one step sideways.

Today, 28 October 2016, would be Emma’s sixtieth birthday. I know what we went through together, I’ve read her original blog and the book I wrote, I can remember little things about her, the way she pursed her lips when she was excited, the way she quit smoking in one second, the way she let go of everything except my hand. I know but do not remember that I cried most of January over her, suddenly lost in loss again.

2004 at the Alamo.

2004 at the Alamo.

I can see her at sixty, having survived cancer, strong and defiant. I like to think she wouldn’t dye her hair, the grey looked rather nice on her, she would have bounced back from the damage of cancer. I try to imagine I will bounce back from this injury, what life would be like together again. I recognized this morning that in April this year I went to Record Store Day, standing in the cold for hours to get the release of a picture disc of David Bowie’s “Wild is the Wind,” her favorite Bowie song. Sam tells me I was still fairly oblivious back then, although I was living pretty much independently and had driven to New Providence to do some yard work with my shattered arm for a deceased friend’s mother. This was when I didn’t know how badly my brain was injured, I was worse because I felt better than I actually was.

 

 

I have little emotion of late, but I woke in the middle of the night thinking of Emma, and realized I was crying. The tears running down the side of my face gave it away.

Regaining my emotions may be a double edged sword, I so want to feel, but I know it will be beyond control. I see other people in my rehab who are irritable and angry, which I hear is the norm for people with brain injuries. I see all the anger in the world today and I want no part of it. I know I need to be upset with my financial situation, at very least I am too broke now to make irresponsible impulse purchases. I am making attempts to raise some money by begging, Emma would never approve. I don’t either, but there are no other options.

I had a doctor’s appointment this week, I know because there was a message on my answering machine. I assumed it would be on my calendar so I erased the message. It wasn’t on my calendar. The name on the caller ID was a neurologist, and I have no memory of making an appointment with a different neurologist, I know I made an appointment with a gastroenterologist. I have no idea which gastroenterologist I made an appointment with, and there is nothing on my calendar, so I guess I’ll start from scratch. Hard to explain how I feel on missing the colonoscopy I’ve been putting off for eight years, I am disappointed because I finally got around to making an appointment, but on the other hand, I am not excited about a colonoscopy in any way.

Bits and pieces flow in and out. One exercise I had in cognitive therapy was tracking random numbers floating on a screen and add them together. Life mirrors therapy, I could handle five numbers, and sums less than forty. After that it was more than I could handle.

I recall when I was a technician, my manager could not fathom how I managed to travel from point to point in such short time, once describing my velocity as “low Earth orbit.” I loved driving, the highway like a river, the cars flotsam and jetsam. I knew what everyone was going to do, I could tell the blue car three cars ahead on the right was going to make a left turn at the signal ahead, so I would change lanes not to be behind the people slamming on their brakes to avoid him. The red car three back to the left was going to accelerate and pull into my lane, so I would speed up a touch and let him fall in behind me. I floated down the road, rarely touching the brakes. Today I am able to recognize how many judgements were being made, quickly and seamlessly. I recognize it because I am unable to accomplish it, I know why I can’t, there is no compensation for my present state, and probably never will be. I’ll never be forty years old again either.

Much of my therapy is not what most people consider therapy. We’re not trying to return to where I was, we’re trying to compensate as much as possible, and to accept who I am. There is some mourning for who I was, but if my focus will be on surviving, which Emma inspired in every way, I have to accept who I am today.

 

 

 

The Invisible Me

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I try to see the injury as a semi-colon

 

Brain injuries are called an invisible disease. You don’t see the effects of brain injury, and people being the kind beings they are tend to ignore minor frailties. We think if you have a brain injury you should be a drooling idiot, unable to dress yourself, so we don’t see the damage when someone is struggling with everything they have to appear “normal.” Brain Injury survivors don’t make it any easier, putting on a brave face, compensating for our deficits; we are accomplices in hiding brain injury. We are trying to keep going.

My injury hid from me. I didn’t see it but my personality changed a number of times, and probably still is changing. I realize my injury is invisible to others, which makes applying for disability, or asking for help, all the more difficult.

I have never been much for clothing, a few years ago a girlfriend commented about how I disrobed when I came home. As I remember, she was naked at the time; I have put up with a number of hypocritical girlfriends over the last few years. When I got out of the hospital, I was not comfortable naked and wore pajamas for the first time since childhood. It felt normal, and although I have returned to sleeping nude, I still cover myself when walking around the apartment. I’m sure my flatmate appreciates that. Possibly related, I have no desire to be intimate, I don’t even kiss Sam very often. It took a while for me to notice, it appears to be endocrine related, as I was once exceptionally passionate.

I am fairly certain I could speak a couple of languages. Not always fluently, when I visited my father in Mexico with my second wife, my Spanish was adequate, but I have never taken a lesson. Three years of French and I could follow and participate in a conversation. A short course in Russian and it was me, not the linguists, who published a guide to pronouncing Russian place names for my wing in the Air Force. A Rosetta Stone course and I could struggle through Flemish with my ex-wife’s family in Belgium. And of course I was eloquent and precise in English. Today, I don’t call my mother on the phone because I cannot maintain a conversation. I am uncomfortable meeting strangers because my speech is broken. I have moments when I speak clearly, but I never know how long they will last. I still fall into Flemish occasionally (and uncontrollably, subconsciously), but the others are fragments, words but not sentences. At one point I could not complete a vision test because I did not know what to call the letters. I was more comfortable using the phonetic alphabet, and then I slipped back into (and out of) the more common American English letters.

At one time I would wake up and watch the news (I can’t bear to watch now, with all the election hatred). Something would spark and I would write an article, polish it, provide links and images, and publish that day. My schedule has not allowed that since I went back to work in 2014, but I was still able to put a thousand eloquent words together on demand. Since the accident several minor issues have prevented prolific writing, at first I couldn’t move my arm and hand, I was typing with one finger. Then as my arm healed, my brain faded, my drives, the self-motivation which causes me to write, disappeared. This article has taken a week, and I’m pushing hard because the exercise is good therapy.

I never realized how exhausting simple thinking can be. I can recall multitasking quite easily, working in the field as a technician I kept two dozen unique machines in my head, and although I was unusual in remembering an incredible number of part numbers (I had figured out the pattern so they made sense, like another language), other technicians handled as many machines. Today, I do puzzles that would bore my grandchildren and I get a headache. At today’s conference of the Brain Injury Alliance I had to leave early, and won’t be moving for the remainder of the day. I cannot commit myself to more than one task at a time, “multi-tasking” means getting both the garbage and the recycling out on the same day, and having leftovers for dinner.

Some things are intermittent. I had good practice dealing with intermediate afflictions over the last thirty years of Multiple Sclerosis. I can “pass” as unimpaired, I don’t often fall to the ground, and typically keep up my sense of humor. My life is mostly free of stress, so I can prepare myself for outings. I will be attending a Halloween party at the end of the month, and I am already panicking. I am thinking the best idea is to tell people I have had too much to drink, and not touch a drop.

One of the intermittent things is my memory. I can’t remember if Biogen is delivering my Tecfidera next week or if I missed it last week, but I can remember a campaign ad for Lyndon Johnson which only aired once in 1964. Okay, that ad is infamous but I remember seeing it air, as opposed to seeing it discussed. There are quite a few things in my life that now seem incredible, some I can verify, others I cannot. Were it not for the ones I can verify, I would simply discount everything; now I question everything. This results in a good deal of confusion and hesitancy, and requires an enormous amount of energy. I am tired constantly, but a spark still exists which tells me to keep going, to push through. Bad spark, I drive myself into the ground when I should just take a break and rejuvenate. One thing a speaker at the conference said struck me, she had been a police officer and was able to talk about what she was wearing at the time of her injury; like me she has no memory of the days surrounding the injury. She rebuilt the scene from reports and protocol, it was a cold day so she would have been wearing certain items, her uniform consisted of certain items, she has read the reports of the incident. You might think she remembers it to hear her tell the story, but I recognized the crutches I use, “according to reports,” “I have been told,” “standard protocol required.”

I am getting better at admitting “I don’t remember,” I can recall, but the explanation takes too long; kind of like when someone says “how are you?” and you say “Okay” even when you are not. The stories are there but I have no ties to them, the number of incredible stories causes me to hesitate; is it a memory or hallucination?

So I keep going. In the words of Robert Frost, “In three words I can sum up everything I’ve learned about life; it goes on.” Just because my injury is invisible does not mean I need to be.

 

 

 

 

 

Who am I now?

 

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There are things I do remember, among them a love of quantum mechanics. Of late I have been running reality checks on life.

Of the things I know, my name has always been a problem. My Birth Certificate says Kenneth Blake Cash. but my parents never mentioned Kenneth was my name until after that first day in Kindergarten where the teacher called me by the “wrong” name. Turns out they wanted to name me James but didn’t want people to call me Jimmy, so they named me Kenneth and called me Blake. It made just as much sense then as it does now, so I am not questioning my ability to process that information. I have had identity issues all my life, so I should be well equipped to handle them now. I just can’t find my equipment.

I hear on a routine basis that I need to accept who I am now. Usually unspoken is “because you are not who you were,” sometimes with lovely imagery about being a new person every sunrise. Yeah, right. This is not a glorious dawn.

I am not precisely starting afresh every day, but more so than before, as far as I can tell. My short term memory is failing, I compensate by taking notes (when possible) and telling people I have difficulty¬† processing information due to a brain injury. This is supposed to be a good sign, I am accepting what I am not “allowed” to acknowledge. I am not supposed to say I am damaged, or that the efforts I make are unsatisfactory.¬† See, in what is left of my mind, being unhappy with a failure is a positive move towards self improvement, but I am not supposed to damage my own self-esteem. Hard to have self-esteem when you don’t have a self.

Who I am is based on what I recall about how I got here. Even the things I remember I don’t feel a part of, making it difficult to distinguish between memory and dreams. Last week I had a strong memory of flying a C-130, I could feel the trembling and see the ground falling away. Trouble is, I have no memory of attending flight school, and the possibility I actually piloted a C-130 is remote. This scared me deeply. How many of the unlikely things in my past did not happen? My “sense of self” is exceptionally weak.

As far as I know, I do not suffer hallucinations. I am considering verifying the presence of new people, and if I am ever aware a hallucination has taken place I will.

Most of my “feelings” are vacant, I have little emotion, and I am not chasing their return. I see enough people adamant about untruths and fierce about mistaken beliefs centered around the election, I don’t want that to be my life. Some of my facilities are returning, although their return can be fleeting; I am told they are an indication of “higher executive functions.” I have a sense of sarcasm, and I’m fairly certain that I can be humorous and people are not laughing at me (today). I am aware that testosterone is missing, and I am scheduled to see an endocrinologist to measure pituitary function, these would seem to be affecting my drive and will. Frustration occurs when I know I should accomplish something and just can not begin the project. I also have read that my serotonin levels should be addressed, but I doubt my own medical skills enough to leave the dosaging of SSRIs to professionals. Again, I know (or think I know) enough to see my primary physician is less than skilled in the administration of SSRIs, so for this and other reasons I am seeking out a psychiatrist.

I know I am not who I was, but I am not certain exactly who I was. This appears to be the perfect opportunity to redefine myself, but I know I will have no past. Seems like it was interesting, I hate to let it go.

I have read through my articles since the accident, I can identify a spirit believing it is healing. That spirit no longer exists, which in a way is odd; from what I am told, recognizing my deficits is an improvement over not recognizing them. So I’m better because I know I’m worse. You should not be surprised at my confusion. Expect incredulous questions about the election.

My desire at this point is to record these facets of brain injury, so that one day I will be able to collect and edit them into a book. What I am most aware of is I may not feel this way in the future. I certainly don’t feel as I did nine, six, or even three months ago. Writing is what I can do, and apparently I am a fairly good writer, although it does not feel that way now. I know I was married to a woman named Emma, and I blogged through her fight with pancreatic cancer, and I turned that into a book. I know this because I looked it up. It is nice having things written down.

My ability to see the future is on par with my ability to see the past, I have no way of knowing this will ever turn into a book, it is a dream, and I am told it is useful to have goals. One goal is to financially survive until Social Security approves my disability claim, I’ve been selling what assets I can on Ebay, and I have started a charity fundraising web page on “YouCaring.”¬† Please consider donating a few dollars, the theory is it all adds up.

For now, I am Blake to my friends, Kenneth to my ever growing army of doctors, K. Blake Cash to my readers, and KB to my social media contacts and grandson (he says “kib”). The man behind the name is developing, trying to establish an identity with a foggy history. I think he will be KB, my grandfathers were known by their initials, I am now the age they were when they met Blake, now Blake can meet KB.

The construction of KB will be on a foundation of those memories he can verify, woven with the beliefs which resonate with his presence. I can remember every printer I ever touched and long to take apart new ones (the psychiatrist has a Toshiba, cognitive therapist a Konica Minolta, Neurologist Kyocera Mita). I recall an astounding array of songs. I have a couple of bass guitars but I can’t get my fingers to where they are trying to go. I know it is acceptable to end a sentence with a preposition. I have a drum, and I know how to use it.

In just over a month I will have my 58th birthday, I don’t know who will be there.

 

 

 

 

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