My Psychotic Break

I pretty much have to write about this.

A month or so ago, I found myself in a spiral of irritation. My sleep pattern slipped from not much to none at all. I was unsettled by something in my relationship and let it fill my mind. I spent the entire day of Sunday yelling at Janice. That’s what I remember.

In a lull of my mania, I asked for something to relax, Janice handed me a few of her pills. After that it gets hazy. The next thing I remember is the phone waking me. It was the police, they were outside my door and would like me to come out with my hands in the air. In my mind, I thought it was Sunday evening. It was Monday evening.

What I have been able to put together is that I was increasingly irrational, and threatened to kill myself quite convincingly. Janice was able to show me texts I had sent; I was horrible. But at this point in time all I knew was that I had fallen asleep and she had left.

I threw on some clothes, and slowly opened the door, revealing myself hands first. There was a nice little barricade set up down the hall, and the glint of laser sights from the rifles pointed at me. I invited them in, they placed handcuff on my wrists, and we took a ride to the hospital. My memory is still shaky at this point, I remember moments but not entire scenes. I know I was well mannered entering the hospital, and I know I lost all contact with reality shortly after arriving. I remember trying to bite one of the nurses, and seeing Janice through the glass door of my room. Later, they took me to a mental hospital, I had been involuntarily committed.

I arrived at the hospital Tuesday about noon, and suddenly realized I was missing an entire day. In my mind I was angry at Janice, thinking she had drugged and abandoned me. The conditions were as one might expect, a few steps up from Ken Kesey’s Oregon State Hospital, but the vibe remained. “Long Distance” calls had to be dialed from a special room, and for some reason anything out of the area code was considered long distance. It took another two days to get in touch with Janice. I think that was a good thing, I hadn’t quite figured out what had happened yet. She had been the person who had signed the order for involuntary commitment.

After release I was able to read the notes from my intake interview. I was described as having a flat affect. I remember slowly waking into reality, realizing the time lost, feeling shock.

It became rapidly apparent that the way out was to comply with treatment. I attended all the groups I could, making friends with the other mental patients. It was a fascinating microcosm of society, we had all, in effect, been equalized, stripped of our individuality. The depth of our mental illnesses determined our ability to recover. Some folks would obviously wait their time out and be released, some folks I seriously hope are never released, but I did not meet anyone who did not belong there. When I was able to realize that, I was able to realize that I belonged there, opening my mind to correcting my mistakes.

The groups were educational, not always about the subjects for which they were designed. One group about red flags put a bright light on one person’s attitudes about relationships, and also showed the folks paying attention that everything goes both ways. Had it not been such a hetero-normative group the message might have sunk in better.

I was (of course) open about my sexuality, I figured it would confuse the staff and spare me a room mate. It did, I was the only male without a room mate. A couple of women opened up about their sexuality, as far as I could see no one was uncomfortable in our group. We quickly became known as “The cool kids,” sitting at our own table at meals; then we slowly became “The old folks” as we dispensed our wisdom to the younger folks. The camaraderie helped us all.

As the week passed, new people arrived, most of them faceless, keeping to themselves, a few more aggressive, pointing out to us how we had felt during the early hours of our incarceration. I could see how I had been and was glad I had not been able to talk to Janice until after I calmed down. One person was particularly intimidating, and knew how to play the staff. He was what they called a “frequent flyer,” someone who had been there repeatedly. The staff knew he wouldn’t follow through on his threats, but we the patients did not. The tension was palpable, and I would like to think that my explanation to staff was a part of my release. I could see it from both sides and explained the difference between physical safety and emotional safety to a couple of nurses, people trained in the field who had just turned a blind eye to the purpose of the facility.

My medications were interesting. I received prompt attention because I take Truvada, an anti HIV drug. They wanted to know if I was HIV positive, so I was processed through medical quickly. Because I had drugs in my system (the ones Janice gave me) when I was admitted, they diagnosed me as a drug addict, and gave me anti-withdrawal meds all week. I received my anti-depressants as usual, but because Truvada and Fosamax are expensive they asked me to have them brought in. Remember the Long Distance issue? Knowing they would have to put out thousands for my meds helped me get permission to make phone calls.

That first phone call with Janice, on Thursday, was overwhelming. I was disgusted by the things she told me I had done as she gave me the timeline of my missing day. I thanked her for having me admitted. I was astounded that she cared for me, and missed me so much. I gave her the number to call in, so I could hear from her, and returned to my group. They could tell I had spoken to Janice, I was glowing. She called every evening, and for that time I was free, not incarcerated. She came to visit and time stood still.

I was released on Monday, and the morning was pure stress. I was told my regular psychiatrist had not been contacted, and I couldn’t be released without appointments with her in the next week. It was less than an hour before my scheduled release when I finally got my post hospitalization therapy schedule. We drove home and spent the rest of the day talking. I had the epiphany that the psychotic break was related to having never fully grieved Emma, and was up all night organizing her shrine, telling stories about each item.

As a result of my commitment, I am no longer eligible to own firearms. I agree. I had no idea what I was doing for over twenty four hours, had I chosen to resort to violence I had a solid arsenal and a couple thousand rounds of ammunition. The possibility I could have another break is higher after having one, so I have no issue with surrendering my weapons. The police were exceptionally nice, assisting with selling the firearms and returning items that were borderline inappropriate, like a set of rolling papers in packages designed by Olivia De Berardinas. I did like the expression on the detective’s face when he said how nice my rifles were, and don’t want to imagine the look when he entered the bedroom with the swing.

My doctors have been interesting, the “What happened?” opening was almost funny. Because what happened was not funny. My brain broke. You can call it a nervous breakdown or psychotic break or whatever makes you comfortable, but I did a hard reboot. I did things I do not remember any part of. I had conversations and wrote texts of which I have no memory. I am better, but the experience was moving. I am fortunate that Janice, against her normal intuition, called 911 and followed through in committing me. I needed the rest. I still need rest, but have spent the intervening month helping Janice move her mother in law (her husband passed away) into my home. I have watched my friend’s final performances before “retiring” to Arizona after fifty years in the music business and spent late nights hanging with musicians several times. I know I am slowing down relative to what I was before, but when I look at it I can not call it “slow.”

I know the path to illness and can avoid it, I am building my resources to be prepared.

 

Eclipses and ellipses

Anything can be a hat

 

As you may have heard, there was an eclipse this week. I went out to observe it with my colander viewer, having located a spot with full sun the day before. Clouds came and went, we had a good image of the portion visible (or not visible, depending on your point of view) near the peak of the eclipse.

 

Eclipse arcs through the colander

 

I recall the camera obscura with a moving box in the 70s, and crossing polarized lenses in the 80s and 90s, but this may be one of the best views I have had. It seems to me odd eclipses are treated as once in a lifetime events, and the current hoopla with Millennials trying to frame themselves as the greatest generation certainly pushed the hype into overload. The next eclipse visible in the United States will be seven years from now, 8 April 2024, with a path running from Texas through Maine. I’m planning a trip to visit relatives in Texas for that, it runs straight through Dallas. This time I was fortunate to have a photographer friend in South Carolina who captured this photograph.

 

©Anna Bruce Martin

 

I often refer to eclipses as “God’s Thumbprint,” because the Sun is four hundred times farther away than the Moon, and is also four hundred times larger. The plane of the Moon’s orbit intersects the Sun, so occasionally the moon blocks the Sun perfectly (The Earth blocks the Sun from the Moon in Lunar eclipses). We have evolved to a point we understand the physics involved, ten thousand years from now the orbits will have decayed and total eclipses will be a thing of the past. Ten thousand years ago there would be no visible corona, the moon blocked the Sun with room to spare. Our relationship in size to our moon has yet to be found elsewhere in the universe, these ratios of size and distance and understanding point to a plan, or at very least a uniqueness in the universe in which we are truly alone.

The tendency to ascribe signs of the end of the world has always followed eclipses, even with our ability to predict them a good deal of foolishness made the rounds. Just a word about predicting eclipses. While it may be more difficult that predicting where the hands of your watch will be at 1200 tomorrow, it does involve clockwork. It is not theoretical physics, more like figuring out which day of the week 15 November will be in 2036. One theme I heard repeated was “Why does everyone believe scientists about the eclipse, but not about global warming (evolution/GMOs/chem trails/feminism/etc.)?” And I’m the one with the brain injury. . .

Speaking of which, I do not have a clever segue into ellipses. The ideas were simultaneous but not connected, and I like the way it sounds. In all the fury and hatred flying about, anyone can be a NAZI. Just don’t agree with someone and you’re a NAZI. I am becoming a grammar NAZI, and I’m worried my house will be burned down by Antifa. This is exceptionally stressful because I live in a fifth floor condominium, and the majority of my neighbors are elderly.

There is one form of punctuation that disturbs me when it is misspelled, and I have started to speak up about it. The ellipsis (plural ellipses) is used more and more these days, largely because people don’t know what to say. Three dots, . . . , should be simple, but I see three commas, two dots, seven dots, even four semi colons, and never the spaces between the dots. Some filter is failing because I have started correcting people. And guess what? No one wants to hear they misspelled a word, much less punctuation.

I mourn language. Text messages were once charged per character, so convenient abbreviations was a way to save money. That doesn’t apply anymore, so we are allowed to write complete words, no need to reduce your language to a Bingo game. Spelling is more important than ever, yet the other day, in a publication, I saw Your and You’re both used incorrectly in the same paragraph. A friend found a menu with a “Pre-fix” offering. Even my late wife the chef, who would often retreat to “You know what I mean” when I clearly did not, would never stand for misspelling on menus. If you can’t get the words right, why should I expect you to get the food right. Another friend said she was board. In my first writing class the instructor advised us to utilize spell check, ponder the alternate spellings and choose the right one.

This is nothing small. Those who control language control thought, and the population. Fascism used to mean totalitarianism, check out a dictionary published since 2009 and the definition has changed from “totalitarian” to “right wing.” So all these morons saying they are anti-fascist are not as deluded as we thought. They are anti right wing, because this is what they have been taught is fascism. That they miss the hypocrisy of their totalitarian approach provides both laughter and sadness. I’ve seen their training videos, there will be blood, mostly their own.

I am not really up for this battle. My weapon has always been intelligence, which I was told last year is fundamentally racist. When the opponent celebrates ignorance, intelligence is a useless weapon. I could write programs, identifying the players, but that would require an audience, and they have already decided who the fascists are. They are anyone who does not agree with them in totality, which makes the Antifa easily identifiable, folks who honestly believe physical violence is an appropriate response to words they don’t want to hear, or even imagine might be spoken.

At least I am prepared to live in interesting times.

 

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.

 

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

 

 

 

 

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.

 

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.

 

 

 

 

 

Memories

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I have no memory of the moment, just a vague impression of the day less than a week after I came home from the hospital, when I heard David Bowie had died. My memories are difficult to explain, I have always been able to put myself into the moment, all of my senses involved, as opposed to simply recalling a list of events, the script of the moment. This is why now I can say “I don’t remember that” while still knowing exactly what took place. If I can’t touch it, taste it and smell it I don’t call it “having a memory.”

My brain is alien territory, my neurosurgeon tells me I should make myself comfortable, I will be here for a while. Maybe not forever, but I am better equipped if I familiarize myself with the terrain. To that end I am learning how to express myself, and taking care to explain my words. I am not ready to share opinions, I lack confidence in my logic. Much as in the way I am careful when speaking about the drugs used to treat Multiple Sclerosis, they did not work for me, but they do work wonderfully for some people; don’t take the fact I don’t use them to mean they don’t work at all.

The gap in my memories has grown, and I’m told this may just be a temporary fluctuation. Presently I have no memories of December or January, and November and February are fuzzy. Important within that statement is the fact my first evening with Sam was Thanksgiving. I am thankful for our relationship, having been abused in my last few emotional relationships, an “open” relationship seemed safer, an opportunity for honesty and communication to take the place of the deception the previous relationships offered. That Sam turned out to be more loyal and caring than the women I have trusted in “committed” relationships the last few years is both amazing and spiritually rewarding (not to imply open relationships are not committed, her level of commitment just astounded me following my previous “committed” experiences). She literally saved my life, then she nurtured me back to self-sufficiency.  This is a list of events to me, I don’t possess memories of any of it. I intend to explore the entire relationship in another article. Less important is that apparently I painted the bedroom in January. Not a horrible job, especially considering I didn’t have the use of my right arm.

A different set of memories started this article, falling about me like, well like purple rain. Now I just need to place these thoughts orderly, to find some rhythm of the falling rain. I used to be pretty good at that, identifying the synchronicities of life.

A large number of iconic musicians have died this year, working down the scale a scary number of musicians have died. While just under two human beings die every second, those of us in the arts seem to have taken a disproportionate amount of losses this year. A week does not pass that at least one acquaintance leaves us, sometimes several (Lonnie Mack died the same day as Prince). Each has some impact, when numbness starts to set in another icon leaves the stage.

Music binds the artist to memory, so these losses have to me been parts of myself. Prince held one such space. Which brings me to the other aspect of memories I want to explain.

With only one previous exception, I don’t stop loving people when the relationship ends. I have been told I should adjust this aspect of my life, but I can find no reason to deny how I felt for a person. If they can’t get over it and need to deny it ever happened that is their problem, more than likely the inability to accept reality is the reason we’re no longer together. Knowing a few people, one of them my last wife, another the woman who insisted I divorce her, prefer to pretend they never knew me helps me understand them better. Getting both of those messages in the same week is a synchronicity worth examining.

After I separated from my first wife, I lived briefly with the most adorable young woman. Very young woman, just a freshman in college. The song “Raspberry Beret” was popular, and mirroring my own love of hats Kay started wearing a raspberry beret, occasionally singing a few lines from the song. I think she bought it in a second hand store, she had incredible attention to details. If only she hadn’t been so young. I moved on to a woman a few years older, but for over thirty years I have seen Kay’s smile (and if it’s a quiet day I spend more time with her) every time I hear the song. We have written to each other, she’s doing well and also has fond memories of our time together.

The first time I heard the phrase “purple rain” was in the song “Ventura Highway” by America. Just now I am flooded with the memory of listening to the song in a raging storm as I drove up the Seaward Avenue exit in Ventura back in 1978. This is what I think of as a memory, the sky is violet and I can feel the wetness from the poor seal of the convertible roof of the Spitfire. There’s a steakhouse on Harbor avenue and I can smell the smoke even through the rain. I am there, and I am here, all because a phrase connected a memory.

I am certain this should be frustrating, knowing how my brain can work yet having sections that don’t work. In many ways I wish I was frustrated, but anger rarely has positive results, and right now I am focused on positive results.

Everything is connected, this is easier to see when you recognize everything is just different expressions of the same thing. I have referred to this as the matrix which supports the fabric of Maya, and as I explore the concept I find we each thrive in a universe of our own choosing. I’m comfortable with the sometimes gritty reality, others find the softness of a custom made fantasy more appealing. There is no “right” or “wrong” approach, nothing intrinsically “better” about exploring reality. It just works for me.

Prince didn’t allow his music on YouTube, so I don’t have a video today. If you get the chance to hear it, Warren Zevon’s cover of Raspberry Beret is a fitting interpretation.

 

 

 

 

The persistence of memory

I’ve always had a good memory, and by that I mean two things. I remember things in detail, farther back than most people, and I tend to remember more good things than bad. Looking back, I remember a much more pleasant life than I know took place. Of course I’m speaking of long term memory, when it comes to short term memory I often can’t recall breakfast.

I know memory is slippery, that we don’t always remember things the way they actually happened. For the most part, that’s a good thing. I can’t remember the last argument I had with my first wife, but I remember joking about the scratches on my face later that day. I can’t remember screaming when my last wife died, but the nurses were in the room immediately, they must have heard something.

I have several memories of childhood, earlier than most people accept as possible. Some of these remain bright and clear in my mind, others I recognize as being “memories of memories”, in that I can recall remembering the event, so I remember the event today, but I don’t actually have a picture of it in my mind.

I often wonder how other people remember shared experiences. I ran into a friend from High School a couple of years ago, when I asked how he was he said “Much better than in High School”. We had lived through years of partying and mischief, he, in particular, was a madman. I guess he wasn’t having as good of a time as he appeared to be having. Maybe pretending to be happy when you are not only adds to your misery.

I’m of the understanding that people do not remember those things which they do not wish to remember. I guess that explains how politicians get reelected, but how is it that they manage to raise the specter of previous administrations? There is a great deal of cognitive dissonance walking hand in hand with memory, and politics for that matter. There is always the “He was such a nice boy” comments after a mass murderer is captured, as an Animal Control officer I often dealt with people who were suddenly compassionate, after complaining about a vicious dog for weeks.

I understand the difference between having a bad memory and having selective memory (I’ve been divorced twice and have four children). My eldest son once told me that we had never done anything that he had wanted to do. Farther into the discussion I found that he had developed an interest in fishing and was upset that I hadn’t taken him fishing more often when he was a child. Actually, I had, but in his mind it wasn’t as memorable as he would expect it to be, as he was now very into fishing.

I’ve wondered if it would be better to be able to purposefully not remember. The bad times in my life are shadowed, but I can find them if I look. I wished for the longest time that I could forget the expression on my last wife’s face after her death, but now I just remember it differently, as a portrait of her strength. I remember her hand in mine, holding me tightly, when I know the fact to be that rigor mortis had set in and I had to peel her fingers open. I suppose that is the best definition of “good memory”, when we know both how we felt, and what was real.