Romantic connections

My romances have seldom been “normal,” so I have actually given up on “normal” forms of relationships as a goal. Since the TBI, my relationships have been healthier because they are not normal.

Just before the accident Sam and I had decided to live a polyamorous lifestyle. This took a lot of pressure off me during my recovery. I was incapable of intimacy, and she was burning out taking care of me; her other partners were able to give her a break from nursing, as well as satisfy her physical needs. Rather than feeling useless I was happy, knowing she was getting the release she deserved. I “came out” as polyamorous a few months later, but I have only started actively dating over the last few months.

Dating has been fascinating. I am sixty years old, recovering from a TBI, so when a woman finds me interesting it is a boost to my ego, and lately I have found a few who are interested. Where I had no reservations about Sam dating, she has found it is not quite as easy when the shoe is on the other foot. It wasn’t a big deal, but watching her process her thoughts has been fascinating. That said, she did make sure I had condoms with me before my first date, unsure of how she would feel if I used them.

I tried dating a married woman (and yes, she failed to meet the standards of ethical non-monogamy), I was convinced that she was really just a frustrated polyamorist, and even got her to attend a poly meet-up with Sam, but she decided that she was committed to one of her other lovers and polyamory was not the path she wanted to travel. We’re still friends, and will more than likely see each other again (we have common interests), but it would be improper to pursue a romance with her.

Another woman was also experimenting with polyamory. She was recently divorced, and I met her at a poly meet up. We had different goals in relationships, so we parted ways; but again, we’re still friends.

Part of the fascination in dating is the changes to social mores that have taken place.  I met Emma through a personal ad, before the internet. She spent the night on our first date and we moved in together within the week. That has pretty much been my pattern, after Emma died I met women on line but it went the same, with an expectation of sex on the first date. Now that I am polyamorous, which most folks think is a constant orgy, my dates have expressed interest in getting to know me first. But that, it turns out, may just be me. One woman I am currently dating said “I sleep with guys on the first date if it’s just a booty call, but with guys I want to get to know better, I get to know them better first.” This time the ego boost was because she wants to know me better.

Being polyamorous, and operating a polyamorous page on Facebook, I have seen a number of variations in the way partners treat each other. In fact we started our page because we couldn’t deal with the way people behaved on the other pages. All these people celebrating freedom while categorizing and judging everyone else. Many polyamorists are self involved, but Sam and I have a relationship based on communication, and you can’t communicate if you are not honest and open. If more monogamous relationships had the same basis the world would be a better place.

In fact, if more people were open and honest with their spouses there might be fewer poly people. I was attracted to the lifestyle because of the communication required. That was in the early days when I thought everyone believed the same thing; as usual I have been disappointed by reality, poly folks are just as human as mono folks.

I am making every attempt at caution, sometimes I think I may be having too much fun. But these relationships are not throwaways, or one night stands, I’ve met some fascinating people. My latest girlfriend, the one who wanted to get to know me better, has an amazing background in activism, and is not “the girl next door” in any way. New ideas and perspectives are always a turn on.

Many people find relationships difficult after TBI. Mine have been wonderful, even the ones that did not work out. I suspect the difficulty is a result of unrealistic expectations on the part of both partners. I am not an evangelist for polyamory, but I know that the increased communication which is supposed to be a keystone of polyamory (and is in Sam and my case) is fundamental during recovery, impacting every aspect of recovery.

My romantic relationships may be the measure of my recovery. Empathizing with new people, juggling schedules, and new experiences, is a solid road to growth. The fact that my relationship with Sam is stronger than ever leads me to believe we’re doing it right.

 

 

The benefits of Brain Injury

I always have found the bright side of any situation. I learned things I would never have had the opportunity to when I spent some time in Prison. I was fascinated by the technology involved with oncology when Emma had cancer. My Traumatic Brain Injury has provided more insight into “Medicine,” Rehabilitation, Mental Health care, and aspects of society of which I was previously unaware.

There have certainly been things which I see as benefits. While I would never suggest that crushing your skull is something everyone should try, a TBI is not universally negative.

Frustration is so normal in TBI patients that the resulting anger is an expected symptom. I was never frustrated; I was depressed, but never felt there was nothing I could do. Instead of anger towards my changing conditions, I felt curiosity. I was exploring the “new” me. It helped a great deal with the transformation. Rather than wasting time in frustration over what I could not do, I was busy finding out what I could do.

One thing I learned from Emma’s Cancer journey was the importance of an advocate. Sam was my advocate in the months following the accident. She coordinated my benefits and assistance.

When my physical therapists told me I would be lucky to get a thirty degree extension of my arm, I did not set that as a limit, I did not aim for thirty degrees. When I reached zero degrees most of the therapists could not do the same. When I reached minus five degrees (hyper-extension according to the books) no one could. It felt good to do what doctors had said I could never do.

When the otolaryngologist told me my hearing was fine, I sought out another, who was able to diagnose the Superior Canal Dehiscence which had occurred when my skull was crushed. I found a surgeon I trusted to cut into my head and now my hearing is fine.

When the ophthalmologists could not understand that my eyes were not on the same plane, I saw a neuro-opthalmologist who prescribed lenses with prisms and tints (which I could not afford). Fortunately, vision therapy corrected my vision.

The mental fog and slowed processing speed has taken the longest to clear. I am probably as recovered as I am going to get, but that is not stopping me from exercising my brain as much as possible. A month ago I was not writing at all, since 1 January I have been writing close to twice a week. I have had no return of my abilities to play most instruments, but I can drum, well. I cooked last week for the first time in years. I’ve started collecting firearms and reloading shells; I’ve been to the range a couple of times and still can’t carve out the bullseye, but it gives me a goal to work towards. And, dating has become interesting again; as I feel better about myself, other people see me differently.

The accident was the result of my fall down some hazardous steps. I had mentioned the state of the steps, and requested a handrail, a couple of times before the accident. Following the accident the owners denied they had ever heard anything about the steps being hazardous, and had no intention, even after my fall, of installing a handrail. That was sufficient for me to file a suit for negligence, which I won quickly. The amount of the settlement was adequate to reverse my losses of the previous years, allowing Sam and I to purchase a condominium and live comfortably.

Due to the damage I sustained, I qualified for SSDI. I will never have to work again, which has reduced my stress level, which in turn assisted my recovery. Getting handicapped parking also made life easier.

I am calmer, much more understanding than I was before. One exception is truly stupid people, of whom I am less tolerant than before. By “truly stupid,” I mean people who choose to not know things. As with the incident at the Lincoln Memorial, it is understandable to be misled by false media reports, but several days after the truth is revealed you are truly stupid if you think the kids were racists and attacked the Native American.

The therapy I received helped me see that an actual “recovery,” in the sense I would be the same person I was before the accident, is impossible. We all change a little every day, I am not the person I was five years ago, nor are you. We just don’t notice when the changes appear over time. I woke up in the hospital and felt I had aged twenty years. I had, because I was able to exist as a thirty something, and now I was my age. Most people face the reality that they are no longer the football hero or cheerleader they were in younger days, I had to face the reality that I am mortal, because I had never “aged” before.

Admittedly, I am doing much better than most TBI patients with my level of injury after three years. I am doing better than most Multiple Sclerosis patients thirty years after diagnosis. All my life has been fortunate, including Sam finding me in the mudroom, where I would have bled to death by myself. This I place as a result of my relationship with God. Little tiny coincidences have made my life fascinating for sixty years, and I don’t believe in coincidences.

Three years after the accident, I appear normal to most folks. Because I am. I am not the whiz kid with all the answers, but “normal” was a pretty low bar to reach. Another couple of years and I might make it to “above normal,” but for now I am content.

Paperwork

 

I was in an automobile accident last September. I received the compensation from the other driver’s insurance yesterday, almost four months later. I don’t know how long it usually takes, I haven’t been struck by another vehicle in over twenty years, but State Farm appeared to be dragging their feet. The young woman who ran into me had not reported the accident to State Farm, so they knew nothing when I went to have the car repaired, but they went ahead and offered me eighty percent of expense. After the car was repaired, I sent them the estimate and photographs. Then nothing.

After a few rounds of sending them the documents, both from home and one of their offices, we determined their security was so thick they really could not do business with the general public. They could not receive my emails because I have a foriegn (Belgian) account and they could not accept the documents at the office because I had them on a flash drive, which they could not attach to their secure system. This was in November, after I wrote about the story on their Facebook page. They had a representative to handle my case contact me, and I was able to send the documents to her private email. Then nothing.

In early January I wrote another post about their lack of response on their Facebook page. I do not recall ever having to call out a company in public in order for them to do their job, apparently it is the way to get things done when dealing with good neighbors. I received a call from another representative, who explained the first representative was on vacation. She was able to locate the claim and authorize payment that day. Not only that, but she said due to the errors they had made, they would pay the full eighty percent rather than deducting for repairs they do not usually pay for.

I’m supposed to be happy at this point, but I realize that had I not written negative posts about State Farm on their social media page, nothing would have happened.

This all brought me back to the aftermath of my TBI, and the hoops I had to jump through while the physical wounds were still healing.

I was fortunate. I had met Sam barely a month before, and due to some unusually difficult relationships leading up to that point, I had taken the approach of total openness. When I was in the hospital she knew everything about me to the point the hospital staff thought she was my wife. They allowed her to stay the nights with me, which was good for everyone. Sam has told me about how I dealt with hospitalization; apparently I thought I had been taken prisoner, and was plotting a spectacular escape involving launching the oxygen tanks through the door. When I was sent home Sam took a month off work to take care of me, and helped guide me through the paperwork required to pay my expenses. I do recall saying “I don’t see how they expect someone with a brain injury to be able to do this stuff” when trying to fill out paperwork.

My first year of TBI was filled with blessings. An old friend set up a GoFundMe page to help with expenses. My landlords allowed me to sublet the extra rooms in my apartment, and I had wonderful tenants who spoke some of the languages in which I was once fluent. Sam helped me enroll in Medicaid and apply for SSDI. I had wonderful doctors.

There were plenty of bad things, it was after all a year I had planned to not be in America, but everything worked out beautifully. Today I am actually better off than I was at the moment of the TBI, my financial situation is restored, I own my home, I have Medicare for insurance, and I get better parking spaces.

I still watch the TBI pages on Facebook, trying to offer encouragement to fellow travelers. I see the frustration and expectations, and I can see again how fortunate I am. Sometimes it is simple, like the other day when a woman could not understand her teenager’s behavior. Her description was of a normal teenager, but she thought it was due to his TBI years earlier. I told her how lucky she was, that this is normal for a teenager and could be taken as a sign he is healing. Most of my recovery may be attributed to my positive outlook, I never presented the typical anger following a TBI, but I could see some of the possible causes of exacerbation. The “normal” world, unable to see physical manifestations, demands normality.

When applying for SSDI, an attorney is recommended. It is not something even a “normal” person is expected to be capable of. When it comes to applying for medicaid or unemployment, no aid is available, yet I suspect most people finding themselves in need may not possess the required competence to complete the process. My social worker was thankful Sam had helped me arrange all my documents, I don’t believe our appointment took more than half an hour.

Bureaucracy is not forgiving of the disabled. I believe that my handling of State Farm indicates that I am healing, if I had been in the daze I was in immediately following the TBI I would never have thought to write about the issue on their page (and I wouldn’t have been driving). It does appear that the anger typically following TBI would have led me in that direction, but I did not experience that anger. And things still worked out.

One other symptom of TBI is tangentalism, which my speech therapist tried to correct. This is when I feel I made a breakthrough. Tangentalism keeps my mind examining all the possible connections, it has always been part of my thought process, so I did not wish to “cure” it. The self evaluation I filled out when I completed physical therapy asked if and how often I say inappropriate things. My response was “no more than before the TBI.” Being inappropriate allows the ability to explore topics others shy away from. As I look over the six years of blog posts, I am comforted by my consistent inappropriateness.

Challenges of Recovery

The second greatest challenge about recovery is recognizing my limitations. The greatest challenge is recognizing I have limitations.

This was not an issue before the TBI, if something needed to be done I did it. Even in the immediate aftermath of the TBI, I needed a room painted for a tenant and was not happy with the job Sam was doing, so I took over and painted the room with my left hand, the right being immobilized.

Over time I realized that some of my limits were because I never recognized how difficult daily activities were. Driving, which was once as difficult as breathing, involves several portions of the brain simultaneously; I had to recover enough to realize I wasn’t doing it well. Today I limit driving to less than one and a half hours each way, with a rest period of at least as long as the drive once I reach the destination. My first attempt at driving on my own, when I was still in physical therapy, showed me the variables I had not considered. Sure, I could drive ten miles to my therapist, but I could not change a tire when I had a flat.

A good part of my time is spent weighing the possible hazards of any activity. I am not paranoid, but the majority of my various careers revolved on my ability to identify the worst case scenario, I’m good at it. Sam has noticed my energy limits, allowing me to budget my activity. I presently have less than five hours a day in which I can be physically or intellectually active, after which I am physically and intellectually exhausted. Breaking down events, allowing rest or at least inactive periods, allows me to go a full five hours. Pushing myself can bring that to three hours.

This weekend there will be a march in my old town of Princeton, NJ. It appears the town that invented “Jews vs NAZIs Beer Pong” was a natural for a white supremacist group. The Mayor and Police Chief of this Sanctuary town have advised against counter protests, on the surface claiming a public safety issue. Knowing the Mayor and Police Chief, I suspect the reason is to avoid making the national news, which might hurt enrollment at the University.  A friend is involved in the counter-protest.

When I heard of it last night, my first reaction was to ask “When and where?” with every intention of being on the front line. Even when Sam said we had guests expected that evening, I was working out a way to do both, and/or explanations why I couldn’t be home for the guests. In an odd nostalgic way I miss the taste of tear gas.

Another thing that (should) happen with TBI is the ability to slow down. As I slowed down and considered the possibilities, I realized it could easily be more than a five hour trip (one hour each way travel plus three hours on site). Emotions would be high, violence could be expected, and arrest was not out of the question. I am somewhat ashamed to say I would rather be incarcerated in my home town than in another state, but it is true. The Princeton Police have gone out of their way to prove their stupidity several times in the last few years, I do not wish to be their latest example.

When I woke up in the hospital I felt old, now that feeling is more of defeat. I have tried to publicize the counter protest, this article being one of the ways, and I have known that I am not up to front line activism for a couple of years, but there are NAZIs in my old neighborhood! I should be there! Not this time, but if they come to my neighborhood I will be out there in a wheelchair if that is the best I can do, depending on circumstances I may be armed.

Another challenge of recovery is accepting my current capabilities. I don’t like it, and see a couple of therapists and a support group to try to deal with it. Fortunately (?) I am actually old, turning sixty last November, and have had Multiple Sclerosis for thirty of those years; I would have become more cautious even without the TBI (maybe). Part of accepting change is recognizing how powerless we are to stop it.

There are many challenges on the road to recovery of TBI, the majority of which are mental. Unfortunately, following TBI mental faculties are typically lower than usual, making the recovery a longer path than originally suspected.

 

I am here in the new year

Good day. It has been six months since I last wrote, and three years since my TBI. Three years ago I woke up in the hospital, and when I say “woke up” I mean “regained my senses.” During the last three years I have continued to regain my senses, it has been a bumpy ride and there is no reason to believe it will ever end, the most difficult part of “recovery” is acknowledging it can never be complete.

As I look over my records, I have written fifty one articles for this blog during those three years, many of which I have no memory of writing, which is a large part of why I stopped. I could not remember what I had already written, and even at the exceptionally slow rate I was writing I felt I was repeating myself. I intend to thoughtfully chronicle my recovery process, and maybe turn it into a book. That sells. My last book didn’t sell very well, but its purpose was not to make money.

I can look back clearly enough to see I have had ups and downs during recovery, I have been better than I am now and have been much worse. It has not been a linear journey. There were times I was almost my “old self,” I know I have cooked meals for gatherings  and can see the words I have written, but I have been unable to do either for at least six months, I can’t recall the last time I prepared a meal.

One exceptionally positive thing I learned in the last round of therapy is that I am retaining information, my difficulty is retrieving it, finding where it is stored in my brain. One test was a panel of twenty items, drawn simply in black and white. After looking at the page of items for sixty seconds, I was asked to remember them. I remembered seventeen. We went on to other tests and then thirty minutes later the therapist asked me which items I remembered, and I was able to name sixteen of them. But it wasn’t the first seventeen minus one, I forgot some and remembered others. Ten minutes later she presented me with a series of cards, each containing an item, but this time there were forty, and my goal was to identify which ones were on the original page. I was able to identify all twenty, with no errors. The information was all in there, I was just unable to identify it all at once.

Among the things I have written off forever are the languages in which I was fluent, but every now and then a phrase slips out in one of them, usually unexpectedly. I still have fun trying to decipher words written in Cyrillic, but I cannot understand a word spoken by my Russian friends. They still presented me with a beautiful ushanka, for which I found a proper pin.

They did refer to it as a “Soviet” hat

A great deal has happened in the last three years, I have been observing but rarely commenting. The national election of 2016, which I had tried to avoid by emigrating to Belgium, was all I had expected it to be. The situation that foiled my “escape” from America has found my forgiveness. Folks are still running about spreading their version of hate and calling it love. I’ve been to a fair number of concerts, and can remember most of them without prompting; and I traveled a bit, visiting both parents with Sam, who had never seen Texas and very little of California before. The problem with my inner ear has been corrected, however, in return I lost a bit cognitively. I am no longer the smartest kid in the room, and I no longer need to be. Some strengths never faded, my sense of direction has remained, at least according to Sam, superior. My technical abilities remained intact, I have driven to a friend’s home over an hour away to repair her copier, and have done some small things in the local community. I have retained the ability to see through the fog of misdirection, which may or may not be a blessing.

I was exposed to so much kindness after my injury that I feel natural helping others out now. I gave an acoustic guitar to a young man in a rehabilitation facility who is suffering a TBI much more severe than mine, and just the other day someone in town asked on the community page if anyone knew how to assemble IKEA, and I volunteered, repairing the drawers in a dresser.

Today I look at a new year, and try not to laugh about the attention paid to a specific date. Every day is a new beginning, every day we are new people, so there is no reason to mourn the person I was before 1 January 2016. My ability to not worry about things I cannot change has been a benefit as I recognize how few things I can change today. It will be little things, creating ripples which hopefully are strengthened  by other ripples of the same frequency.

No promises on how often I’ll be writing, it would be lovely to once again write every day, perhaps that will happen some day. Three years ago I woke up as an old man, I have since been certified as disabled, but I feel neither old nor disabled today.

 

 

Conflicting memories

There is this feature on Facebook called “On this day.” It is a collection of posts you made on the date through the years, I usually see things I am happy to be reminded of, even the less than pleasant moments show I have survived.

I used to be a photographer, and one of my influences was Henri Cartier-Bresson. Cartier-Bresson conceived the photographic concept of “decisive moment,” as he said “To me, photography is the simultaneous recognition, in a fraction of a second, of the significance of an event.” I took this to the mechanics of film photography, where an exposure could be 1/1000 of a second. There are nine hundred ninety nine thousandths in the second which are not captured in the photograph, along with the countless seconds, minutes, etc. in which no camera was present. A story can be told in 1/1000 of a second, and it may be a completely different story 1/1000 of a second later.

Some days I posted several times on Facebook, there was usually a mood I could get from reviewing the posts, a pattern which gave me some insight into that day. Some days I wonder what I was thinking, how those seconds reflected my mood.

On this particular day, three years ago, at 1003, I posted a video from the concert I had attended the night before (Beck). I remember how much fun we had, how we were dancing so much the video is hard to follow. At 1740 I posted “If anyone needs a roommate, or would like to share a nice place in Princeton, it looks like I’m single.” About an hour later I posted video of a song by the Cars I had taught my step-granddaughter to play on her toy xylophone fifteen years earlier, I commented she was in college by then (2014).

I looked through the comments on the “looks like I’m single” post, and realized again how abrupt it had been. A month earlier I had thrown a lawn party to celebrate Lieve’s American citizenship. We had met not quite four years earlier, and now three years afterwards we don’t speak at all. Somewhere along the line I should have gotten angry with her, I’m sure there were moments, but I had kept my happy memories, and continued to care for the belongings she left in America until she returned. She swept into my life, found what she wanted, and swept out.

Yes, there is insight from this. I am a doormat. I look only slightly deeper and see more similar behavior on my part, my next girlfriend moved in, spent most of her time in Florida, and abruptly moved out, then claimed she couldn’t trust me with her belongings after complaining about how I took care of Lieve’s things (her opinion had been I should throw it all out, we actually argued about it). That entire relationship took only six months, I had become a more efficient doormat. I still collected the things she missed when she left, and brought them to her door, delaying only to avoid leaving them in the rain. Looking farther back, through the lens of a brain injury which has left me even more peaceful, I can see that with the exception of Emma, my third wife, I have always been a doormat. Probably with Emma as well, she just didn’t take advantage of it. I see it as my quality, and find myself doing it even now; thankfully Sam does all she can to avoid treating me in the manner I fall so easily into.

I know I was miserable for months when Lieve left, but I don’t remember it. I know there were signs we were drifting apart, and although I have no memory of purposefully ignoring them I must have. It seems obvious to everyone I talk to about it, yet somehow I missed it. I remember a woman pretending to slap me across the face and calling me a doormat, people told me but I thought I was being a better person, turning the other cheek and not reacting to betrayal. I still believe this to be true, I appreciate the lessons I have learned from being walked upon, and although I have volunteered for a repeat performances, I now know how to avoid them. The surreal quality of all of this puts me in a peaceful state of mind, which may seem incongruous. I am comfortable in knowing I responded with grace despite the (sometimes literal) attacks.

The artist Rene Magritte said “Everything we see hides another thing, we always want to see what is hidden by what we see.”

This is not a pipe

This is an image of a pipe, it cannot be smoked, the first step in seeing what is hiding behind what we see is recognizing what it is we do see. I see a happy carefree life, and while I desire to see the reality of the moments I remember as happy, I don’t wish to enhance my existing depression. Fortunately, I am able to see it all as a path, I am happy now so this was one path to happiness, clearly there are others.

I let go. I let go of the pain, but not the memories. Not that such an approach has assisted me in avoiding repeats. I have started to let go of the memories, largely because they suggest to me some friendship or relationship remains possible, and that moment has passed. When I see a day such as the one represented by Facebook, I realize I must leave those kind thoughts behind, I do not wish for anyone to be hurt, including me.

 

What’s in your wallet?

I am well aware that I do not fit in to the definition of “normal,” the larger question of my sanity remains unresolved.

With a last name of Cash, I have always had an interest in currency. I keep coins and notes from various places in my wallet (European style with built in coin purse), as time has passed and the collection has become more diverse, I have adopted the rationale that when someone someday finds my body, they will be perplexed, it will be my final joke. An inventory this morning reveals;

A 100 Ruble note ($1.69 USD)

A 10 Euro and 5 Euro note ($11.43 and $5.71 USD)

A 1000 (old) Peso note ($0.05 USD)

And in coins;

A Susan B Anthony and “Gold” US Dollar

A 2£ coin

A 100 (old) Peso coin

A Canadian dollar

One French Franc circa 1970

A 2€ coin

An East Caribbean dollar

A two Drachma coin

One each one, two, five, and ten Ruble coins

A Septa subway token

 

Certainly the wallet of a traveler, perhaps a time traveler? Three passports, a couple of visas, don’t even know my real name? Well, most folks don’t, and I’m not entirely certain.

 

 

My days are scattered, this morning I am contemplating the relationship of Tachyons to Dark Matter, whether politically correct revisions at Disneyland foretell mankind’s loss of humor, why two regenerations of The Master are more troubling than multiple regenerations of The Doctor interacting on Doctor Who, whether my younger friends parents were listening to my favorite music when they conceived my friends, and if my new earplugs should be teal or pink. I settled on pink.

Folks will think these are hearing aids, when in fact they are the opposite

 

I had a friend around the turn of the century (this one), when I was working as a technician, and we often said our lives were like having seventeen video screens on at once. Recently I saw a meme about brain injury which used the same analogy, right down to the number seventeen. Maybe that’s why I am weathering recovery so well, I was already like this. I have recently discovered my inner ear is a rather precise barometer, one more thing on my mind as I verify my impression with the readout on my phone.

When I was very young, we had a willow tree in our front yard. In addition to learning one “lesson of the willow,” that it is better to bend rather than to break, I also learned that a willow switch stings more than a belt. Everything has a purpose or two, not all bring wisdom in the same way. In learning the second lesson of the willow, I learned third, that I should not take off with a friend to the ice cream parlor a mile away at five years old. What kind of teacher provides a single lesson? That is lesson number four. It’s an unending cycle, which can be traced back to a willow tree.

I live in a forest, surrounded by teachers and lessons. I remember just about all of them, and their connections form a beautiful matrix upon which hangs the curtain of reality, Maya. I have found that if you don’t recognize the curtain, you can’t look behind it. There is something about having widely disparate bits of information randomly connecting in your mind that either gives you innovative ideas or drives you insane. The trick is recognizing which has taken place. I try to keep an open mind on the subject, it is an exceptionally tight rope.

 

 

Society demands binary responses, so my way of thinking often frustrates others. My ability to determine which ideas are “good” and which are “bad” gets confused as the definitions of good and bad take on a life of their own. I consider ideas that some people would not, either because the idea had not occurred or they immediately dismissed it. I am starting to question why I don’t immediately dismiss ideas, and am only mildly concerned I have found no reasons to do so.

There is a good deal of waviness in my thinking of late, as long as I stay out of trouble I can believe I am still making rational decisions, but I see it in my writing, this article in particular, but also several that I wrote following the TBI.

 

 

 

 

Ten days out

This is me on 12 April 2017, two days after surgery, when my compression bandage was removed.

12 April 2017, bandage removed

It looks severe, and I guess it is, but it wasn’t painful. I’m told I received IV steroids during the procedure, which were supposed to make me feel better. My experiences with IV steroids in the past are radically different, they literally sucked the life out of me when I received them for multiple sclerosis, but I did indeed feel better when I left the hospital this time.

I felt too good in fact. I am supposed to limit myself, some limitations are obvious such as avoiding loud noise (no concerts for two months); some are less obvious, aimed at reducing cranial pressure. I can’t bend over to the point my head is below my heart, I can’t lift more than three kilos, I’m supposed to sleep at a 45 degree angle. I took a lot of scolding to settle myself down.

My symptoms are gone, no bone conduction sounds, no autophony, no pressure in my ear. I’m also less aware of my cognitive deficits, which I knew was a possibility but intend to withhold judgement for a month or two.  I do suddenly have tinnitus (out of curiosity I checked the frequency, ~3000 hertz), but that is an expected post surgery symptom which should resolve itself within a few weeks. My balance is a bit worse, so I’m using a wheelchair for the time being. It is fun, but a bit tiring. I can turn and spin as if I’ve been doing it forever, which should be good news; no dizziness or motion sickness. It has pointed out my only post surgery pain, the point on my left hand in which a catheter was inserted to measure blood pressure. The other catheter, made famous by my friend Barry Parham in his book “Why I Hate Straws,” was just a weird sensation, and I had to eat through straws the first two days.

As days go by there are differences. Not always pleasant but there is no indication they are permanent. The hearing is returning to my right ear incrementally. At first, higher tones came through as if they were transmitted by kazoo, scratchy and fuzzy like the teacher character in Charlie Brown. Today they sound more like whistles. I yawned for the first time about four days post surgery, which was a good sign, I could open my mouth fully, and I was tired. I’ve been sleeping a great deal, probably more than after the brain injury, but back then I couldn’t move much so perhaps I was resting more then. Opening my mouth meant I could try more foods, we found a new Mexican place one night that had wonderful food and great margaritas, ranging up to thirty two ounces. I ordered a smaller one but asked the waitress if I could see the thirty two ounce glass, it was a small fishbowl. I’ll have to visit again when I am fully recovered, they carry my favorite tequila.

We’ve been discussing the question, “Was it brain surgery or ear surgery?” in my SCDS support group. A little of both. The brain needs to be moved out of the way, so even though an otolaryngologist does the diagnosis and sometimes the ear part of the surgery, a neurosurgeon must be part of the team to handle the brain; or in my case, a neurotologist (with a T), which is a new specialty, who handles both parts. The condition of Superior Canal Dehiscence was only identified in 1995, it only affects about one percent of the population, and not everyone requires surgery, so it is rare to find a neurotologist, or even a neurosurgeon/otolaryngologist team, who can properly treat the condition. Some people I have spoken with went a dozen years or more seeking a diagnosis, as most otolaryngologists don’t recognize the condition. It took me four doctors, the second one made the diagnosis and referred me to a team I could not trust, so my fourth happened to be a neurotologist who had just transferred to my hospital from Portland. Perfect timing, his schedule is already filled. I saw him first on 15 March, already had the cat-scan which showed the hole, he said he had 10 April available for surgery so we did the audiograms and VEMP testing the next week. Other folks I have spoken with, searching years and finally getting a diagnosis, were depressed. The surgery is scary, I felt a bit of fear, but nothing was going to stand in the way of a solution.

There was more stress in the intervening weeks than I am accustomed to these days, my landlord lost all vestige of civility and kicked me out of the home where I have lived for four years, and the anesthesiology department demanded a full echo cardiogram a week before surgery because the EKG showed “minimal voltage LVH, may be within normal parameters,” which was difficult to schedule because in their request to my insurance they said “routine health examination” rather than “pre-surgical requirement.” We found a place to stay, moved, and laughed with the echocardiagram technician about healthy my heart is. Plus, just watching the echocardiogram was fascinating. The drain pipe in our new place broke about a week before surgerythe plumber came in while I was in the hospital. Even good news, like my father wanting to come out, caused a little stress because I knew I would be out of it most of the time he was here. At least he was able to see my oldest son while he was here.

My father as I regained consciousness

Sam did a wonderful job of preparation, stocking up on soups and broths and creating healthy food I could ingest through a straw, I was just able to eat solids too fast. She was able to have her father over the night I came home, so he met my father. She scolded me into slowing down, along with members of the SCDS group and some of my friends (special thanks to Vince Coviello, who put it bluntly, “Recovery is not supposed to be exciting. Just suck it up and listen to the Docs!”). Sam made sure the place we live is level, reducing the chance of falls, and has been of constant assistance. I’m going to need to do some exceptionally special things for her when I am fully recovered.

I am getting better. The overlap of symptoms with TBI and MS made me wonder what would change; I am pleased so far and have no doubts about future improvement.

 

Days go by

Days turn into years, sometimes it is hard to tell the difference.

1 April 1999. April Fools day, a perfect choice for a wedding date for two people who were each married twice before. If, as Oscar Wilde had said, “Marriage is the triumph of imagination over intelligence, second marriage is the triumph of hope over experience,” what are third marriages?

For Emma and I it was the triumph of passion over ego. There was not much we did not feel strongly about, for the most part we fell on the same sides of issues. There were a few things in which we found we held diametrically opposed viewpoints, but today, eighteen years and one brain injury later, I cannot recall anything to which we did not eventually find a peaceful resolution.

Our passions were intense. I recall meeting some friends at the winery a week before Emma and I met. I was in an unusually peaceful state, and Suzanne (there were five “Sues” at the winery, each addressed with a unique variant of the name) said “Blake must be with a new woman.” I smiled and shook my head “no.” I had no women in my life and was enjoying the freedom. I had just turned forty, and after a series of passionless relationships was happy to have nothing to complain about. She knew what I was looking for, Suzanne and I had talked about it so often she would drop into an imitation of John Lovitz as “Master Thespian” when she said “Passion!” The next week I took Emma on our first date, a Nouveau party at the winery. Suzanne saw us, and silently mouthed the word and thrust forth her hand. It was obvious from the moment Emma and I met.

Four months and two weeks later we married, another eleven years, three months and four days later I was holding Emma as she said “I can’t fight anymore” and stopped breathing. There was little I could do during those years other than to love her.

I truly did not believe I could continue without her. Depending on my state of cynicism I often believe I should not have tried. It has been six years and eight months since then; I remarried, divorced, and had a few relationships. My current girlfriend is similar to Emma in many ways, and radically different in many others. The passion is there. The ego is different, second generation American from Ukraine as opposed to Emma’s first generation American from Sicily, but they are both fierce.

This week, concluding with what would have been our eighteenth anniversary, I will be rebuilding Emma’s “shrine,” a glass case I prepared for her urn just after her death, which has been in a closet for the last six years. The spare bedroom at my new place will house both her shrine and her cat, Autumn. I was worried about keeping a cat in a “no pets” building, but there are provisions in the Fair Housing Act for therapy and support animals, and my doctors provided the required documentation. Autumn is all I have left of Emma, I suspect I will handle losing her much as I handled losing Emma.

As my memory has come into question, some memories seem stronger than ever. Weeks like this intensify Emma’s presence in my mind, although she is seldom distant from my heart. I picture her in her vision of heaven, with her mother and her first husband who she never stopped loving. My life has taken some strange turns of late, perhaps “stranger” would be more accurate; my life was never normal. I struggle to write, and recall that I started writing for the public for Emma. In the last year I have needed to redefine almost everything, Emma and Autumn have been my constants, my F if you will. After my injury Emma was heavily on my mind while little else was, as I prepare for cranial surgery reminders of her hospital experience surround me.

I don’t speak much now. Partially due to the effects of the SCD, partially due to my need to understand what everything, including my own thoughts, mean. Emma comes to me in the silence, and guides me towards light.

 

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Autumn, Therapy Cat

 

 

 

 

Moving on

Flowers between the cobblestones, Gloucester MA 2010

With everything which has taken place this year, from the initial accident, trying to diagnose the myriad of problems which arise from fracturing the various bones of my head and elbow, and having an exceptionally difficult tenant, I have been blessed.

Despite osteoporosis, my bones heal rapidly. Despite the traumatic brain injury, I’ve remained calm and dignified. Despite a constant spinning of my world, wonderful things keep happening. Despite a horrible display of human cruelty, I have seen compassion in unexpected places.

I have been forced from my home, in what can only be described as an insane sequence of events. I do not possess the capacity to understand why this is happening, and have no desire to demonize the parties responsible. I am disabled, a month from a major surgery on my cranium, penniless after a year unemployed, and people I thought were friends have tossed me to the curb; in some ways I am thankful. This crisis has revealed the kindness of others.

My ex-wife was kind enough to take some furniture I would be unable to move. Other friends, including people I only know on line have helped. One woman, who I had never met in person and who has differing political views (she attended the Women’s March in Washington) provided her mini-van for a morning, and not only provided transportation, she helped move things. I learned a good deal about her during this time, and am quite pleased to call her my friend. It took a bit to process what had happened, and I found myself shaking.

Liz is a Democrat, who distinguishes herself with her recognition of “limousine liberals.” She doesn’t talk about people in need as she drives by, she stops and helps. This Vassar educated mother of three (two on the autism spectrum) spent her morning helping a conservative punker. Okay, neither of us fit the expectations of those descriptions, which is in many ways the point. Labels are irrelevant, souls are what matters.

We spoke about our experiences, she has children in the Princeton Charter School, which the Princeton Public Schools have declared the competition; and in what I have come to believe is a typical Princeton response the Public School Board is more interested in destroying the Charter school than improving their own students. I saw this trait expressed in a variety of issues in Princeton, ad hominem attacks rather than displays of any measure of superiority. Liz continues to attempt to bridge the divide, hosting meetings of both sides, opening her home (and sledding run) to everyone. We mourned the death of civil discourse, and although we differ in our beliefs of the cause, we share the loss of meaningful debates, recognizing the next step is authoritarianism.

Liz is what I had expected Princetonians to to be when I arrived (shortly after the picture up top was taken). Intelligent, well spoken, and civil. It took six years to find a person fitting that description, and I met her on my way out of town. My experience of Princeton was elitists, posers, and hypocrites. It is very reassuring to know people such as Liz exist in the wasteland of Princeton, reviving my faith in humanity; in a world as torn as ours is, there are still flowers growing between the cobblestones.

This month I have seen some of the best in people, and some of the worst. Life is always about balance. There is something important in there, as I configure what is left of my brain and work through increasing vestibular issues. The rose coloured glasses present an illusion, however the world is not filled with assholes clinging to hatred. There are people like Liz and I, not many, but perhaps enough to turn the tide. Perhaps, although I will never know the outcome. We accept the future is not predestined, rather it is malleable, to be improved with actions rather than curses. The core of meaningful conversations is mutual respect, the absence of respect begets rage, which I believe we can all agree is our present position. The world needs meaningful conversations, which should lead to people who will take actions rather than consider themselves virtuous because they are aware of the issue and have appropriately rebuked those who are not wearing the right colour ribbon. Hope lies in lifting each other up, not in putting each other down. Humans need hope.

There will always be the trolls, and it is altogether possible they will be the majority of the population. I may have thrown away my rose coloured glasses, but I will always believe that love outweighs hate, that one good person is more significant than one hundred bad people. They can destroy a person, but ideas live forever.

Save

A new window

I may have mentioned having some hearing issues since the accident.

I have now visited four otolaryngologists, in an attempt to diagnose and correct the problem. Well, two to diagnose, then two more to find someone I trust to perform the surgical correction.

The first otolaryngologist gave me a hearing test, which returned results consistent with an aging punk rocker. My attempts to explain my experience was not adequate to pull his eyes away from my chart, even though he did conduct the one tell tale office exam that should have pointed him in the right direction. He offered to write a prescription for hearing aids, even when it was evident they would not correct the problem.

The problem, you see, is that I hear too much. There is a “fullness” in my right ear, much like the pressure you feel when changing altitude, except swallowing doesn’t clear it. I hear my heart beat in my right ear from the time I sit up in the morning. The shower hitting my spine is deafening. My voice has a bass resonance in my right ear. Sound builds, so in a short time all I hear is the resonance (autophony). These sounds are heard through bone conduction, which is why I hear them and you don’t. Normal people hear sounds conducted through air, and entering the ears.

The test the first otolaryngologist performed that should have pointed him in the right direction was placing a tuning fork on my skull, then holding it over my ear. I could not hear the tone in my right ear, but it was loud and clear when the fork was placed on my skull. Opposite results for the left ear. So he suggested a hearing aid, and I suggested a different doctor.

Doctor number two recognized the symptoms right away. He called it “a third window,” a reference to an extra opening in the Superior Canal of the vestibular system, which is attached to the cochlea. The medical name for the condition is Superior Canal Dehiscence, or Superior Semicircular Canal Dehiscence, Syndrome (SCDS or SSCDS). I’ve learned lots of new words, but I’m still not sure about the pronunciation of “dehiscence.” As you can see from the CT image below, and probably guessed from the explanation, corrective surgery takes place within the cranium. The canal is a bony structure adjacent to the temporal bone, on the “in” side. A hole is drilled for access.

 

The third window

The “third window”

 

Doctor number two could not perform the surgery, and referred me to a specialist at the University Hospital in Newark, NJ. This doctor did more tests and did a CT scan of my temporal bone. She definitively diagnosed the SCD, but was so disorganized and scattered I wouldn’t trust her to open a can of tuna, much less my cranium. I remembered my neuro surgeon from the accident, and contacted her. She referred me to doctor number four.

Doctor number four is Dr. P. Ashley Wackym. I have seen a few dozen doctors in the last year alone, he is the first to impress me. Alright, he has a lead initial, so there is a sense of kinship, and he dresses well, a nice suit and sharp shoes; but what blew me away is that I did not have to explain my symptoms, he asked me about each of them with familiarity. Another thing which gave me an odd comfort is that many of the symptoms of my TBI are also symptoms of SCD, in other words, correcting the SCD may assist with the issues I am working on with the TBI. Wouldn’t that be lovely?

From what I have read, SCDS is very rare. This may be because it was only identified in 1995 at Johns Hopkins. An estimated one percent of the population has the dehiscence, and many do not develop into the syndrome. Not every doctor knows it even exists. Severity varies, and in the big picture my case is not serious compared to patients who cannot stand because their balance is impaired beyond therapeutic correction. I just have so much annoyance with my hearing that I would be most comfortable as a hermit. I am frustrated because going to hear a band requires a day of rest before and after. I have considered putting a spike in my ear to relieve the pressure, but other than that my life is not in danger. When I was diagnosed with multiple sclerosis it was relatively rare, largely because diagnosis was so difficult. With the advent of better diagnostic tools, we hear about people with multiple sclerosis every day. I knew a woman diagnosed at the same time as I, who had been searching for fourteen years, trying to maintain a grip on her sanity. The stories I hear from other SCDS patients are much the same.

I look forward to the surgery for a variety of reasons. An end to the noise will be wonderful, and the experience should be fascinating. I will spend two days in the hospital and recover at home for six weeks, and I’ll probably have a scar on the side of my head which will alter my choices of hair styles. Maybe it won’t work, I could lose my hearing completely (which would not be terrible if the autophony goes away), it could simply not work, or any of the myriad of surgical complications could happen. Anything could happen with the surgery, without it one thing is certain, the noise will continue until I lose my sanity and find a window large enough to leap from.

 

Blinded by Science

 

I have something of a love/hate relationship with “Science.” My father would be considered a scientist today, he has a degree in chemistry, and actually worked as a chemist for a few years before applying his degree towards the sale of devices to measure chemical processes. This is the “Science” I grew to love, every evening there was likely to be at least one discussion about science and its applications, they might relate to the preparation of dinner, the PH balance of the pool, the earthquake we experienced the night before, the latest gas chromatograph or liquid scintillation counter his company had produced or the most recent space launch. I remember being yelled at about a few projects I had devised with my chemistry set, a part of me chuckled when he would say “Don’t you realize what could happen” because I did, that was the purpose of the project. Back then, a scientist performed research.

Science made sense. It was rational. It didn’t care how you felt about it.

As an adolescent, “Science” became popular with society. Quotation marks science, just the word, not the method. With total disregard for the scientific method, the word “science” was bandied about as if it were some deity. In many cases, it was, as people made thoroughly misinformed statements about a conflict between God and Science. This is where my hatred was formed. An individual who understands neither God nor Science claims they are in conflict. Were it one person the data would be anecdotal, but it was common. This is the beauty of science, you can reproduce the experiment yourself. Ask a dozen atheists about a conflict between science and God, they will demonstrate an ignorance of both, regardless of the God in question. Well, perhaps not in the case of the Church of the Flying Spaghetti Monster, but any religion based on historical texts. The most frequent error is assuming a religious text is a science book, then pointing out differences in language. Assuming every follower of a religion interprets the texts precisely in the way the atheist interprets what he’s heard about it is also quite common.

As common meanings continued to be discarded, everyone became a scientist. Typically the credentials these scientists hold is having read an article about an interpretation of an abstract. In an impending “Scientists March on Washington” everyone is included in the name of diversity, it’s not even being called a “Scientists March” anymore, within days it became “The March for Science.” It was no longer about science, it was about “Science” advocacy, which means whatever you want it to mean. I received this message before dropping out:

“We are taking seriously the many important criticisms regarding (lack of) diversity on social media stating that for this march to be meaningful, we must centralize diversity of the march’s organizers (both in leadership positions and at all levels of planning), speakers, and issues addressed as a principal objective for the march. We hear you, we thank you for your criticism. In the March for Science, we are committed to centralizing, highlighting, standing in solidarity with, and acting as accomplices with African American, Latinx, API, indigenous, Muslim, Jewish, women, people with disabilities, poor, gay, lesbian, bisexual, queer, trans, non-binary, agender, and intersex scientists and science advocates.

-March for Science Diversity Team”

I’m not quite sure what “Centralized Diversity” is, I had heard enough doublespeak to know better than to pose a question. Which is, of course, the reason for throwing around the word “science.” To silence opposing viewpoints. To enhance the self described “intelligence” of the speaker. No doubt it works with large groups of people. You have heard someone say about anthropogenic global warming “The science is settled.” Science is never settled. Anyone who tells you it is does not understand the scientific method. Science is about excellence, not diversity. You do not know who George Washington Carver was because of the color of his skin, or Marie Curie because of her gender.You know them because they performed revolutionary experiments, verified their results, and then communicated the reproducible results.

So it is a Brave New World. I’m thinking it’s more of an Animal Farm, the porcine population seems unusually prominent. I am fortunate in that part of my therapy is recognizing things won’t be like they used to be,  but it is supposed to be me that is different.

We made such complicated things look so simple, we forgot how hard it was to get here. Everyone was not just equally important, they were special. Everyone might be unique, but they cannot be special, superior to each other, and still equal. The next step is even more bizarre, everyone else is stupid. I’m not sure how these folks celebrate diversity when they truly believe people who do not share their views are not just misinformed, they are mentally deficient. This would give me a headache even if I didn’t already have a brain injury. The generalities and exclusive inclusion suggests a logic most often found in asylums.

You will see a March for Science, they’ve already ordered merchandise for the selfie crowd. Suggested speakers include Alan Alda, whose television commercial mocking actors as doctors should be force fed to the organizers of the march a la “A Clockwork Orange.” Other pop-science advocates have been suggested, Bill Nye and Richard Dawkins among them, and Neil deGrasse Tyson surely won’t miss an opportunity to be on camera. Sir Magnus Pyke would have been excellent, but as an actual scientist I suspect he would have declined. What you will not see is a march of people who are scientists, or have any idea of the components of the scientific method. It will be a March for Obfuscation, quite the opposite of the original intent.

I had hoped, out of naivete, to actually advocate for Science, perhaps help lead people to an understanding of why the method has been revered since the seventeenth century. Perhaps the realization that we have arrived at the tower of Babel is the most depressing thing I have learned in all of this.

 

 

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Here’s the right way to do it partners!

Review

I’ve been doing some cleaning, physically and metaphorically. Sam is moving in, so I am making space for her, and as I do so, I find myself making space in my mind.

Today, I started organizing the “cat room,” a large walk in closet in the hallway which holds Autumn’s food, water, and litter box. It has a great deal of storage space, which has never been wonderfully organized, and after I changed bedrooms last year it failed to miraculously arrange itself. So far I have combined the contents of two shelves into one full shelf, one empty shelf, and a full recycling bin. Three shelves and a four by six floor to go.

Some of the items that made it to the recycling bin were my collection of Belgian beer bottles, which I had already been feeling rather foolish about. It started a few years ago and spread to cover every windowsill in my bedroom, but was really the domain of a teenager. I wasn’t bothered at first, convincing myself it was a sign of rebellion, not acting my age, but in reality it was silly.

I threw out my retirement notebook with all my 401k statements, it was rather depressing to see how much money I had when I retired, and the memories of where it went. I’ve been shuffling off my memories of Lieve and her children over the last few months, forgiving them for their behavior, this was a good physical act to remove reminders. It has been an interesting exercise, and I am fairly certain I understand the events better than when I was living them.

Two large packages were paperwork from Emma. All sorts of things I shouldn’t have, she saved everything. I have her documents safe, in these packages were her previous marriage certificates, and Death certificates from her husbands and father. Pay stubs and IRS returns from before I met her, photographs of her father and mafia elite, a lithograph her father had purchased for his grandson which no one ever wanted to retrieve. There were some things I kept, pictures of her in grade school, cards I had given her, and the silliest picture of her on a tractor which her first husband had adored; it makes me happy to think of them together now.

I’ve been moving around a number of “feelings” lately. I have chosen to walk away from a few friendships with people with myopic views of the presidential election rather than argue. Some were so vehement in their passions I actually found it necessary to block them. Oddly, this space has allowed me to make new friends, they share the beliefs of my old friends but feel no need to bring it up in every conversation. This is not a unique situation, Lieve and I were visiting one of her friends back in 2013 and said “We brought you something you’ll like.” She responded “Dick Cheney’s head on a platter?” This was four years after Cheney had left office, but he was still on the top of her mind, probably dying of loneliness.

I settled my feelings about a woman I cared for deeply who had brain damage. It saddens me that I needed to experience it to understand it. I had known she was fragile and was exceptionally gentle with her, but my fortune was to know her during a remission of symptoms, I was not responsible for her relapse.

A friend called last week, in panic. She had overstepped her morality, and was filled with shame and embarrassment. I understand how that works, but I don’t truly understand the feeling. I was quite impressed she turned to me, I know I’m a warm and understanding person, but my morals have been questioned repeatedly. We share the experience of losing a spouse, so I suppose that is why she trusted me. My brother (yes, I am accepting that I have a male sibling) once told me I had no morals (I did, they just were not his), I could never tell if he was serious or jealous. Most likely he was just judgemental, which I increasingly am not. It is pleasing to know that I am seen as non-judgemental and egalitarian.

I am doing better with the analysis of my thoughts and motives, and although this gives me insights into the thoughts and motives of others, I dare not reveal what they show me. In a conversation about an article in Pravda about unrest in America, one person suggested the use of water cannons to disrupt protests. This sparked a discussion on why water cannons are not used in America, with someone insisting that water cannons and mace are still used in America, which turned into an argument about the difference between “mace brand” and “MACE.”  Yes, the conversation about a Pravda article claiming that Americans will argue about anything devolved into an argument about anything other than the subject of the article. I watched helplessly as any possibility to share information vanished. One person stepped in and made the point I was trying to reveal, they were ignored as the argument carried forward; the initial discussion completely forgotten. This is why I am shying away from discussion, most people only want to argue. I do not. I want to exchange ideas, which does not happen on one way streets.

I am finding peace in stepping away from disruption. This may result in life as a hermit, everything has a price. I still believe the tide is turning, I’m just in no condition to surf.

 

2017

Happy New Year. I am much happier today than I was one year ago, waking in the hospital with what must have been a wonderful assortment of drugs. I do not recall pain in my elbow, but it was still a few days until I realized I no longer had an elbow. It must have hurt, previous experience suggests morphine would have eliminated pain without clouding my memory, although the brain injury should have clouded my memory.

Today, that rebuilt contraption functions better than any of the doctors and therapists expected, better than most of them thought possible, better than any of them were capable of doing themselves. That is one of my triumphs, something I am proud of even though I had little to do with it.

It appeared, to everyone, that an inordinate number of performers died in 2016. David Bowie died on the day I started writing again. It is difficult to remember, I can’t remember writing, but the article exists and is accurate and not horribly written. The brain injury was apparently not clouding my memory at that point. I could only have been typing with my left hand, I remember frustration with using the mouse left handed, and I remember the initial reports on the internet. I remember Sam being there, and saying to her “I think Bowie died.” This is how my memory works now, bits and pieces. From what I have been told, my brain may take another couple of years to heal, perhaps I will have rich, full memories again. They still exist for some moments of the past, not as many as before, but none in the past year.

They tell me I will continue to get better, and that progress will not be linear. My goal, which I believe I have achieved, is to accept this. I no longer judge myself against two years ago, I judge myself against two months ago. I don’t always see the improvements, but people around me do. As many reminders I receive that TBI is an “Invisible injury,” I like to believe what others see as improvements.

There have been some disappointments, but I am certain I am not the only one to have been disappointed. I like to think I have become accepting and tolerant, and in reality one cannot be tolerant unless they are aware of what they are tolerant of. The election cycle appears to have been far more divisive than previous elections. I have friends who stepped away from social media altogether, many of whom have stated “All my friends became monsters.” I have seen a failure of civility, related to but not a part of the election. The route to proving one’s point has somehow degraded to insulting the opponent’s intelligence. It hurts a bit when you’re recovering from TBI, but it has been a learning experience, both in illuminating the character of people who claim my opinions are due to my brain injury, sometimes in crude and derogatory terms; and in learning not to argue with people who have no interest in reality. I am trying to open my own mind, I do not have the energy to open others.

I have not been as irritable as it appears is common in people with brain injuries, I have become more frugal with the energy I am willing to expend. It is fascinating to discover how much energy it takes to do nothing, I find myself exhausted after completing one or two simple tasks in a day. I shy away from meanness and anger, so perhaps I am more sensitive to it. People rarely feel they are cruel, telling them so makes them angry, so I have had to simply avoid some dear friends and family. This should tell me something about my former self, I have yet to figure out what I have learned. In some cases I wonder why I ever put up with them in the past, in most cases I see my own failure in enlightening them.

I have done enough. That’s just me talking, I really have nothing to say in the matter, but I have no desires of conquest. I intend to spend some time volunteering at the Brain Injury rehabilitation center down the road, I recall an ability to communicate with the non-verbal. I haven’t expected a long future for some time, but I can do my best with the days that present themselves. Who knows? Maybe I will fulfill my genetic predisposition and go another forty years. Time will continue, and all of this will eventually be meaningless.

 

 

 

 

Man of mystery

From what I hear, I am improving rapidly. I don’t see the improvements themselves, but I see the results of the improvements. I have learned a good deal through this brain injury, one more counter intuitive duality of TBI.

I am more thoughtful, slowly forming opinions about everything. Being less sure of reality has benefits. I am not certain of my own history, so I am a man of mystery to myself. I have far more memories than should fit into a normal life, but most of them suggest my life was anything but normal. The ones I can verify are less concrete than the ones I cannot, so I lean toward believing all of them. My sense of caution tells me not to discuss a past I cannot verify, so for the most part I’m sticking with my cover story.

I know I am impaired, but impairment is relative. I would ever so much like to accept my present condition, there is no reason to believe I will be who I once was (whoever that may be), and frustration over my loss is allegedly  detrimental to progress. Of late my frustration has been over recognizing my disability. I am better than I was a few months ago, I may be better than the average person, but I am still not functioning as I once did, so people who expect that level of performance become frustrated with me, and in turn I become frustrated. I am the one with the brain injury, yet I am the one who is supposed to be understanding of others.

I received a letter from Social Security telling me I have been approved for Disability payments. Page two lists the amount of the past due payments, and the percentage that will be paid to my attorney. Page six states I have no past due benefits. I called the attorney for clarification, but they had not received the letter. I emailed a copy of the letter, and their response was “You have been approved for disability.” I knew that. No response to my question about past due benefits. But I’m the one with the brain injury. Apparently they finally received the letter, and I received a letter from the attorney, which included “I feel you should have received your past due benefits by now, if you have not, please contact the office.”  I contacted the office again, and was told I have been approved for disability payments and the letter from the attorney was a form letter. Thank you for keeping me in the loop. But I’m the one with the brain injury and all these wacky ideas about proper communication.

I feel compelled to meet new people, but my old habits of closing bars do not fit my current abilities. I can still drink more than the average American, but even sober I am uncomfortable driving in the dark. At Samantha’s suggestion, I have become involved in a couple of “Meetup” groups, and created a profile on OKCupid. A friend, who “tunes” dating profiles professionally asked if I was ready to date. I had not given it a thought, so I guess the fearlessness is returning, I may be the only person who values that return. I’m ready to be rejected again, and opening more of myself to attack. In one of my Meetup groups, “Beer Fridays,” I met a woman who does not drink beer. She wasn’t sure what the group was about. But I’m the one with the brain injury.

I have noticed a peculiar group developing. There is a small number of people who wish to overthrow the recent election. At first I thought they were Democrats, but I have friends who are Democrats, and these folks have little in common with polite society. A few of them have asked to be friends, which at first I found admirable. My heart remains open, I still enjoy intelligent discussion with those of opposing views. Apparently, I’m pretty gullible, they had no interest in conversation, only in someone to spew their hatred towards. Their aims seem to aligned with Daesh, the Intel specialist in me is a bit alarmed. I hope they learned, from my polite goodbyes, that grace is an admirable quality, but I strongly doubt it. This is one in which I can say “Yes, you do have a brain injury. Be careful, the world is not filled with nice people.”

Today, my Tecfidera, the medicine I take for Multiple Sclerosis, was delivered four days late, by United Parcel Service. My door is not easy to find, but that was not the problem as the driver left notes on my door. Right under the heavy knocker which he must have thought was ornamental, and across from the doorbell which eluded him. I’ve worked around UPS drivers in the past and know to require a signature on deliveries, their “loss” rate is phenomenal. I saw the truck pulling away, and went out to find another note. No contact information on the note, they really don’t want you to call. Sam found a way to contact them, and they sent him back; she went to the door when I saw the truck pulling in. He said to her “Well, if you’re going to have an attitude, I won’t deliver here anymore.” I cannot imagine why I was charged extra to have a driver come to my door and insult me, apparently that is the point of the notes, to avoid the driver. I know these drivers are under immense pressure, I saw one crack over a wrong address when I worked at the Police Station. This incident was inexcusable. I got a call from the local office wondering why I didn’t just go to their office and pick the package up. Apparently they only drive the trucks around as advertising. They said they would talk to the driver and get back to me. In the 90s I watched a driver walk through security at a UPS hub smoking a joint, the security guard just said “you’re not supposed to smoke in here.” You were not supposed to smoke in the entire multi building facility, and they allegedly had routine drug tests.  I will be specifying FedEx for future deliveries, and will lobby to drop UPS from the preferred carriers list, but I’m just an unreasonable crank. That guy with the brain injury.

Part of the difficulty in finding who I am is discovering what planet I am on. I have memories of a place where people strove to communicate with each other. It would be easy, and from what I have read from other TBI survivors quite common, to feel alienated. I am either an alien or severely confused about proper behavior, are these memories of a civil society false? When I was told that people with brain injuries often are irritable and cranky, I thought it was frustration about inabilities. Then I thought it was from frustration about the processes we have to go through, with a brain injury, to be accepted as having a disability. At this point, as I become increasingly irritable and cranky, I can see it is due to frustration about the inabilities of the world in general.

I have a brain injury, and am keenly aware of my impairments. I may even overcompensate in order to appear “normal.” The more I interact with people, the more I realize I’m trying too hard. “Normal” is nothing to be proud of. I am a stranger to this world, and rather happy to discover that fact. It is kind of cool being a Man of Mystery.

Flowers

Some memories are fluid, untrustworthy as they embellish themselves. Some are burned into my soul, so even as they hold beautiful moments, they are solid, comforting in their details. As time has passed this last year, some memories have been lost, and some have resurfaced, bringing me to tears. This is one which touched me deeply.

The memory is of tomorrow’s date, 20 November, in the year 1998. I had just turned forty and ended a relationship. The week prior, on my birthday, I had stopped by Chaddsford Winery, where I had worked for a few years and was part of the family. I had just had my tragus pierced, and was in a very good mood. My friend Suzanne said “You must have found a new love, you’re glowing,” to which I replied “Nope, no relationships, I’m taking a break,” much to the shock of the table. I had a well earned reputation as a ladies man, my friend Pete once exclaimed so loud my date heard him, “Where do you find these women?” I told her he was complimenting us both.

The memory of 20 November was inspired more by some flowers than the calendar, more on that later.

There was an event coming up at the winery, a Nouveau tasting, and I needed an escort. I found this ad in the paper.

Emma's personal ad

Emma’s personal ad

This was a world before the internet, with personal ads in newspapers and conversations by telephone. We eliminated the goal of “lifelong partner,” her husky voice informing me that there were two things I needed to know about her, she was Sicilian and she smoked. Ironically, I was with her for the remainder of her life.

I picked her up at her apartment, she didn’t want me to come to her door due to her dog, a two hundred pound Rottweiler. As I waited in the car she came out and first approached another car, she later told me she had asked if he was Blake and he had said “I sure wish I was.”

I drove us to the winery, there was a light rain. As we approached I told her I knew an alternate entrance, through an open park behind the winery. It had not occurred to me how strange it would be to drive off the road and through the woods with someone I had just met in person, later she told me her hand had been on the door handle the entire time.

We had a lovely evening, I’m fairly sure she was impressed with the way we were treated by Eric and Lee, the owners. We were kissing quite a bit in the barrel room and she suggested we continue at my place. I did not need to be asked twice. When we reached my room in South Philadelphia, a “trinity” with a winding staircase, she looked around and said “This won’t do at all” quite severely. I wasn’t sure what she meant, until she continued “You’ll have to move into my place.” I had been in her presence for about three hours, but had no reason to argue. I went down to the kitchen to get some food, and returned to find her on my bed in a lovely corset. At some point we slept, we awoke intertwined.

I drove her to a little pancake house near her place for breakfast. I had Belgian waffles, then I dropped her off and went to my weekend job at a florist North of Philadelphia. When I arrived at work my friend Beverly picked up my vibe and was ecstatic for me, preparing a bouquet for my new date that evening with Emma. Emma brought her handcuffs. It took almost a week to move into her place in Delaware county.

Now the flowers.

About a month later we traveled to Bloomsburg Pennsylvania to see my oldest son Leyland in a “A Christmas Carol.” The next morning she suggested we “stop by” and visit her friends Catherine and Bill in Staten Island. She never was much for directions, but my ex-wife had been rather rude the night before (she was under the impression I was coming to see her) so I was seeking a way to sooth her.

We finally located Catherine and Bill after dark, and had quite a bit to drink with them. At one point Catherine reached over and broke a piece off of a plant about six inches long, telling Emma it would root if she just stuck it in some dirt. Last month, eighteen years later, that plant finally died. It had flourished, and had been shared with several friends through the years. It is called “Crown of Thorns” and produces small pink flowers. At least ours did, no one else ever saw them, and Emma felt she had an intimate relationship with the plant, which was producing the flowers just for her.

When Emma was in the hospital, just a few days before her death, some friends brought a plant. It had a much thinker trunk, but it was the same species, Crown of Thorns. I have had that plant for just over six years now, and the other day it produced flowers for the first time. I was so excited Sam heard me in the other room. These flowers are white, but apparently there were pink ones previously, the petals remain nearby.

new flowers

new flowers

These flowers remind me of the entire story. So far the majority of my rediscovered memories have been pleasant, I always had trouble remembering bad times. I know Emma and I had disagreements, but we usually ended up laughing, like when she threw a spoon at me and it bounced off my head and embedded into the ceiling.

I worry sometimes that I dwell on Emma. Right now exploring memories feels safe, I don’t focus on a single moment and repeat it, I just have a wealth of pleasant moments with Emma. I have no desire to live in the past, I’m just glad I remember it.

 

Real World Problems

I have been attempting to put my personal issues into perspective, recognizing that my impairment is not the end of the world. In the meantime, the world ended.

I was once a fairly sharp analyst, at least two sets of memories indicate this to be true. One of the main reasons I had wanted to emigrate to Belgium was to miss the presidential election in America. As it worked out, the woman who left me behind returned in time to vote with her fresh citizenship. Had I been with her perhaps she would have stayed in Belgium, the equation is too difficult to approach.

So here I am, unable to endorse either major party candidate. I would like to make a change in our lexicon, changing the word “vote” to “endorse.” I suspect people would have an easier time accepting their role in the process if they realized the position was not solely their decision. My personal choice was Gary Johnson, the Libertarian candidate, largely because I overestimated the American voters, and thought all the folks who were upset about Bernie Sanders being cheated out of the Democratic nomination would actually vote for a third party candidate like they said they would. All that would have been required would have been for a third party to receive 5% of the vote, but that did not happen. They were all demanding honesty but couldn’t come up with any of their own.

Wednesday morning I woke to the news Trump had won, I had pretty much figured it out before I googled for the results, there was no “We Won!” fanfare from the liberals. I also had some messages from Belgium, one right wing politician was rather snippy about me and “my kind,” had I been in Belgium she might have figured out who me and my kind are. I was called a racist and a homophobe before I left for therapy, and couldn’t bear the wailing and gnashing of teeth on the radio so I put on something more comforting. I found that the bass tones on Courtney Love’s album “Live Through This” match my hearing disturbance and were quite soothing at high volume. “Asking For It” almost put me to sleep.

So there I am, at the Brain Trauma unit, and of course the elephant in the room was unavoidable. We work on mindfulness and cognitive therapies, ignoring reality is frowned upon. As I spoke with my therapists and other patients, I heard the phrase “You’re the most sensible person I’ve heard from all day” a couple of times. I have come to expect it from the other patients, coming from a therapist it was a bit unusual. Me, the guy with a brain injury, was the most sensible person she had heard from all day.

I remain impaired, plagued with neural fatigue after something as simple as a Lumosity session, as well as losses in processing speed and memory. I have regained my sense of humor, and the bloodwork indicates my hormones are once again balanced, but there has been no physical or emotional confirmation. I consider myself “better” because I can recognize I am unemployable. My neuro-psychologist says that high functioning brain injury survivors take the most therapy, because we have so much difficulty accepting our limitations. I understand, that is to say I know what is holding me back, and for the first time in my life I can’t conquer it. The astrategies which worked in the past, denial, working through pain, only make the problems worse and slows any actual recovery. Punching my way out only leaves me with bloody knuckles.

I can’t really ponder my future, fortunately I don’t care. I know I can’t sustain my lifestyle, I can’t even manage to make it to my friend’s gigs; last week I couldn’t accomplish a day trip to see the “Monkeemobile” at a local shop. I feel more isolated, but the physical isolation doesn’t trouble me. The mental isolation does, if you will excuse the comment I feel like the smartest kid on the short bus. It is all perspective. I do not expect to be taken seriously, I expect that anything controversial I say will be responded to with “Well you know, he has brain damage.”

In a society which so easily dismisses complaints as “first world problems” I try to point out the human element, the issues we all face. The turbulence following the election shows us pervasive arrogance and violence, which are real world problems, reaching across all social and economic barriers. The people claiming to be intellectually superior were suddenly made aware of the electoral college, one person standing on her degree in history claiming it had only been used five times previously (she did not realize it has been the method of election in all of the sixty previous elections, yet considers herself politically informed). I live in the Northeast, every year people forget how to deal with snow, I suspect some forget what snow is. After a lifetime of ambiguous sexuality and taunts of “faggot,” I was called a homophobe because I didn’t vote for Hillary. The problem is a failure of perspective, people who protest in the name of tolerance acting with no tolerance. It would be easy to blame this on a lack of education, but most of these people will tell you how educated they are, largely because they never bothered with the definition of education. To them it means they attended a particular institution, not that they learned anything useful. Someone told them they were educated, they never realized that the truly educated never stop learning.  They feel they are compassionate because they have seen compassionate people and it made them feel good, as they drove past. I cannot argue with such arrogance, it would be the equivalent of trying to convince a crazy person they were not sane.

I recognize I am probably not completely sane. Which in a counter intuitive way validates my sanity. I listen to people who do not listen to themselves. I guess I’m asking for it.

 

 

 

Running on Empty

I believe I have always been a gentleman, as well as a gentle man. That may be nearing an end. I am increasingly frustrated and irritable. I am not happy with the person I am becoming, but I see no way out, and I am looking hard.

I pictured it last night as a four engine aircraft running on three engines. Looks easy, but that is not how it was designed, that fourth engine had a purpose. The twin engines are fine with only two engines, there are plenty of single engine craft and helicopters. I should be happy with three engines, but I know I used to have four.

I attended a gathering last night, my big night out this week, and ran into someone I saw a few months ago. He remembered my name, we had met at a gathering of a related group which had been both of our first group forays. Of course I didn’t remember his name, and probably wouldn’t have without the injury. I was never good at names. After a while something happened which caused Sam to mention my brain injury, and he said “But you look okay.”

Yes, I look okay. Because what is wrong is something you cannot see. I falter, walk with a cane, am hard of hearing, can’t see very well, but those issues are common in people of my age. I have adapted. I smile, ask people to repeat what they have said or to speak more slowly, I have a beautiful cane, I connect abstract ideas on occasion, I dress well, I fit in. I can remember trivial events, which covers for the fact I forget what I am saying mid sentence. Writing does the same, you don’t stop every few words as you read this, you don’t know how much I struggle with each sentence.

A relative called the other night. I suspect he meant well, but there is enough of me left to feel critical of his aloofness. I can remember telling him about what I am doing, he acted as if he did not. He made some insulting comments, which I am sure he did not realize were insulting. When Emma was fighting cancer, another relative felt the need to casually insult the profession of restaurant server. When I reminded him that Emma had been a server most of her career, he doubled down, directly insulting my dying wife. Both of these people are related to me, not many of my close friends can believe it. I wanted to hang up, but I am too nice. I shook until I fell asleep, and slept poorly. The next morning when I could collect my thoughts I wrote him an email, explaining the pain he had caused. I knew better, nothing was going to change. He wrote back, I couldn’t bring myself to read his email. I asked Sam to read it, just to tell me if there were any questions to which I should respond. She said it wasn’t as bad as she thought it would be, but she hadn’t read my letter to him, so I let her read the email I had written. Her opinion changed, so I am glad I did not read his email. My words did not merit his response, which I had expected. This has nothing to do with my injury, it’s just a reminder of a disappointing relationship at time I need a more supportive one.

There are these kind of issues, the untangling of issues. I run into it with physicians, who try to separate my multiple sclerosis, traumatic brain injury, and advancing age rather than just treating the symptoms.  Insurance is even more frustrating, because it’s just a faceless voice on the telephone, giving their personal interpretation; if I call back I get another faceless voice with their own interpretation. Social Security Disability is scary, because from what I can gather it is a monolith, the unimpeachable opinion of one person determining my future, and that person has no medical training upon which to form this opinion. Personal interactions are the worst, everyone intends empathy, and I can finally understand the meaning of “You don’t know how I feel.” Depression is present, but I actually have brain damage. I can’t just think of things another way. I want to be gracious, but I don’t believe I can keep up the facade much longer. I don’t know how well I’ve kept it up so far, people have been falling away from me, no one has visited, I have received very little support from my fundraising attempts.

A few years ago, I visited Lieve’s brother in Belgium. She was never precise about his disability, but he was in his forties, living in an institution, wheelchair bound. He cannot speak, but he recognized me from a previous visit. We all had lunch in the day room, with the other patients. This was a residential care facility, there were no white coats, and most interactions were in Flemish. An hour or so in, I realized I could not tell the patients from the staff, and they probably felt the same of me. I was pleasant, attentive, but my English just sounded like gibberish, my Flemish was broken. I feel the same now, my adaptations and eloquence make me appear to be “normal,” I carry no physical scars, I look okay, but I am not.

I am scared. Not as much by my crumbling finances as my crumbling brain. I may end up homeless, if things continue the way they are certainly by this time next year, perhaps much sooner. I had once thought losing one’s mind would be peaceful, a gentle descent into forgetfulness. Sad that one of the last things I am to learn is the solitude of a broken mind.

 

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I always thought of myself as a warrior. I’m losing this battle.

 

 

 

 

 

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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Vocabulary

Like that first step, there are first words. Another stumbling block.

You have probably been in the situation in which you try to explain something to someone who, for whatever reason, simply does not understand what you are saying. Communication is possible because we share a definition of the words we use. Telling someone something is beautiful is meaningless if by “Beautiful” you mean “green,” unless they also define “beautiful” as “green.”

I find that certain words have different meanings to me now than they used to. “Remember” is one of them. My memory is a collection of moments. I have always known my approach is different from that of other people, and from what I hear in therapy my “problem” is that my memory is now “normal.”

When I was teaching aircraft identification in the Air Force, I taught my form of memory. An aircraft is not just a list of features, it is an object. If you remember the object you can mentally walk around it and identify the features. This just seemed obvious to me. I have retained memories of childhood because they were events, one in particular, a motorcycle when I was four years old, moving from Corsicana Texas to Dallas. A young man had come over to say goodbye and was giving people rides on his motorcycle. It was a cold day, I can smell the exhaust and hear the engine. I have several similar memories from Corsicana, a toy, a party, a girl (wouldn’t you know, even at four).

Now my memories are mere recollections, I am aware something happened, but I have no sense of participating. I have the script, but not the experience. The clearest example is painting my bedroom last February. I know the room has been painted. I know I painted it. I know Sam and I went to Home Depot to buy the supplies. But I have no sense of actually doing any of these things, no memory of smelling the paint or holding the brush. I am aware that at the time my arm was so injured I could not move it, so I must have painted left handed. But no memory of left handed painting. No visions of paint covering the wall or dripping on the floor. I can imagine my personality telling Sam she wasn’t doing it right and taking over as she has told me I did, but no picture of those things happening.

The fog is expanding, more events are becoming lists in my mind. I know we went to the cinema to see the latest Star Wars film, Sam has said I was adamant from the time I was released from the hospital that I would see the film. I have been to that particular theatre many times. But I have no memory of going to the theatre or the film itself. I have fragments, I know the film was essentially episode IV recast, but I can’t recall any dialogue or tell you if we had popcorn. A strange twist, I was reminded of a blog entry from February (which I don’t remember writing) in which I mentioned seeing the film. At that time I could remember the other films in the saga, yesterday I watched episode VI and did not remember the film. I know there is an episode VI and that I watched it with Emma, but the scenes and dialogue are foreign to me. I do remember her distaste for science fiction in general and certain elements of the film in particular, she had been annoyed by the phrase “younglings,” hearing it brought back the script, but not the experience.

Other redefined words may exist, but I don’t know which words they are. I had a great deal of trouble explaining to the ophthalmologist what perceptions were missing, it was as if we were speaking different languages. This event I remember, so the memory issue is fragmented, and in fact we were speaking different languages, he was speaking ophthalmologist, looking for things manifested by different tests, I was speaking English, explaining things not revealed by the tests.  I had a similar issue with the otolaryngologist who is supposed to uncover the reason for my hearing loss. He is looking for an inability to hear measured tones at precise frequencies and decibels. I am experiencing interference, as if my ear was blocked. Most sounds come through with the density of bone induction.

The inability to communicate has caused a loss of confidence. I am not as sure of my thoughts, ideas, and judgements. I am not sure if I am communicating with myself in my internal exchanges. When I express my thoughts, what are those thoughts based upon? I have had a couple of conversations about morality, and I realize I am ill equipped to argue my point of view. Part of this is not my thought process, there appears to be a sector that believes the universe is defined by their personal standards, even the words “truth” and “moral” have a single meaning, the meaning they have assigned. Debate is reduced to disparagement, and thus from an educational standpoint, useless.

Part, if not all, of my cognitive therapy is designed to teach me to accept who I am today. I recognize that. Hoping to be who I was last year is as futile as hoping to be the person I was thirty years ago. I know that each day we are new, a fresh set of twenty four hours of experiences build us into altered beings. The accident was merely a new experience, a major, life-changing experience, but life is changed every moment. I have been aging since birth, this was just a rapid acceleration of the process. I never wanted to be normal before, now it is a goal.

normal