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.

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.

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.

 

14925575_1346719802019340_5225789069413413590_n

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

 

 

 

 

 

The Invisible Me

14591662_538142499725514_6065443848925516777_n

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.

 

 

 

 

 

Social Therapy

The therapies I have participated in since my accident have attempted to bring me back to a functional state. I was never merely functional, but they need a target.

Occupational Therapy has been trying to get my elbow and wrist to function in ways conducive to performing in an occupation. My mind is a bit fuzzy (more on that later) but I do not recall being asked which occupation I should be prepared for. My last position was in a warehouse, preparing shipments of fifty pound boxes of cosmetics. Prior to that I have done many things, both as vocations and avocations. Presently I can write, but I have never made much money writing (You could buy my book if you want to help). As much praise as I receive for my progress, I am nowhere near ready to pick and ship boxes heavier than three pounds. The other day one of the therapists was saying how well I am doing, I can touch my shoulder. I told her I really wanted my arms to match, and she asked what I could do. I wasn’t in the mood to show off, but I took my left arm, extended it to perfectly straight in front of me, lifted my arm straight up, brought my palm to the back of my head, and rotated my wrist clockwise and then counterclockwise, ending each twist with the back of my hand on the back of my head. These movements were based on the extrapolated extremes of the exercises I had been doing for my right arm.

Apparently this was not the goal they had in mind, as none of the therapists could reproduce the movement.

My Physical Therapy has been trying to get me to walk smoothly, without falling. I am not progressing quite as well here, I’ve always been a little wobbly and my gait can best be described as a controlled fall. I make them nervous, they keep thinking I’ll fall, but I saw there was a wall there and managed to bounce off of it. My days of ballet, or even expressive dance, are no doubt behind me. Yoga is still on my list, I can see it as a life long physical therapy project. If I’m lucky I will find a way for medicaid to pay for it.

My Cognitive therapy is as broken as I am. I have my first evaluation next week, and my comprehensive evaluation has yet to be scheduled. Parts of my brain are healing, enough that I am aware that things are missing. The entire months of December and January are now a mystery, and November and February are not as clear as they should be. In the interim I am taking the Lumosity training, and after a month my scores are as high as the fifty seventh percentile. I am well aware my mental acuity was previously in the ninety ninth percentile for some tasks, never below the ninetieth. There are languages in which I once could speak fluently and no longer can count to ten. I know what belongs in the kitchen but can’t think of how to put it together into an interesting meal. Emotionally, I am vacant, yet for some reason I feel an attraction to a woman who I had the police remove from my house last year.

My vision issues are slowly being narrowed down to the correct ophthalmologist, and my hearing tests have resulted in a “well that’s unusual” response from my doctors.

The most satisfying therapy I have tried has been “Social Therapy.” Spending time doing the things I am accustomed to, with people I am accustomed to. I hope I am progressing well, but my friends are not therapists, they may not be telling me about my failures.

I started out slowly, catching my friend’s “British Invasion” show, a chronological performance of the music of the 60s and 70s. They even had actors doing introductory skits, the opening had a great twist on “Who’s on First” substituting The Guess Who, The Who, and Yes as the acts of a concert.

Sam and I had a nice evening discovering garlic fries and I shot some video for the band. It was a good “first night out,” not too crowded or loud, and loads of memory laden music.

The next week we returned to see  my friend Buddy Cash play with his band and a couple of the guys from the band Squeeze. Buddy always packs the house, it was a busy and loud night, but it was great to see everyone again. Squeeze covered a lot of Led Zeppelin, which was an odd turn but interesting. With Buddy and two former bassists from Squeeze there was a plethora of bass players, unfortunately I didn’t shoot any video that night.

A few days later I met some friends from school I had not seen in decades.

Blake, Mike, and Kati

Blake, Mike, and Kati

My friend Michael Montgomery is a magician, he lives magic, always prepared for an illusion. It was amazing to watch him seamlessly flow from conversation to magic. Kati (Karena Walker) is a yoga teacher and singing bowl practitioner.  I attended a healing circle Kati and another yoga teacher put together a few months ago (although in my mind it is presently a fact and not a memory), it was exceptionally soothing. We had not all been together in nearly forty years, we met at Michael’s house, met his wife Paula, and had a wonderful evening rekindling memories. This is something I must do again, I carried a smile for days.

Tonight I’ll be seeing another friend, Ritchie DeCarlo, play with one of his bands, The Prussia Kings, at a club not far from Sam’s house (fortuitous planning). Ritchie’s musical directions are always interesting, and the club carries Chimay Premiere, so the evening is promising.

My friend Tribbee returns from Scotland this week, the Vernal Equinox arrives with Sunday,  April brings the Punk Rock Flea Market and Record Store Day. All of these things engage and stimulate my brain, providing much needed social therapy.

The road ahead is long and mysterious, much like my journey with multiple sclerosis I have no idea what to expect. I do know, at least I feel, I must regain my memories, exercise my brain, regain my mental acuity. I may appear to have recovered from the accident, but there remains a long, largely invisible, recovery ahead. Sam has said being with me is like being with my twin bother, we look the same and have similar characteristics, but we are not the same person.

I really want to be me again.

Unknown Territory

A dimension not only of sight and sound but of mind

A dimension not only of sight and sound but of mind

 

I have been writing in this blog for almost three years, daily at first, slowing to a more random pace, trying to settle on no less than once a week. Three hundred and eighty articles in and I am on target. I’ve covered topics from Quantum Physics through Astrophysics, Cosmology through the End of the World, Religions, Politics, a little Sex, and a good helping of Music. In short, the things I think about. This last year has been increasingly personal, and this article may wander into the most personal dimension, not the thoughts in my mind but the matrix of my mind itself.

I have always had a strong memory, recalling the quantity and quality of the events I have witnessed with speed and precision. I have been told I possess a keen intellect, absorbing and analyzing information, then communicating said information in easily understandable terms to any audience. I tell you these things because I remember them, not because I am aware of their presence now. I am reticent to comment on the world today, as I am not secure my analysis stands on the same foundations I have relied upon in the past.

Imagine the way you think. The complex layers of a memory, the data from all of your senses wrapped in your intellectual perception connecting every fraction of a second. I have been told a human may only experience one sensation at a time, one sound, smell, touch, emotion. The brain switches between inputs so rapidly it appears all these things are happening simultaneously, yet even more is taking place outside of awareness. We possess filters, our vision shifts our perception of colors to believe light is white; try on some tinted lenses and see for yourself. We can hear a melody through static, separating out what we want to hear; the same can be true with words in a conversation, consider a single political speech as heard by one thousand different voters, each hearing what they want to hear. We have each had enough tactile experience to know physical sensations are relative. Emotions exist in a dimension of their own, no adjectives are adequate. Tuned by all these factors our memories reside not only in the instant they were formed but also in the moment they are recalled. A word describes this, it is originally Sanskrit. The word is māyā (माया), and in a sense we refer to as “poetic” it has multiple meanings, most commonly considered to be “The illusion of reality” in the sense reality is an illusion. It is “that which exists, but is constantly changing and thus is spiritually unreal”, and the “power or the principle that conceals the true character of spiritual reality.”

With this fabulous brain creating reality from our sensory inputs, it can be difficult to determine if one of the inputs is faulty, and often difficult to explain. Verbally explaining a vision issue to an ophthalmologist is near impossible, you don’t speak their language; twice in my life I have had to resort to visual aids, a smear on the lenses of the first, using my hands to represent my eyes to the second, and this because I had diagnosed the problem and needed them to confirm and treat it. They had been pursuing (and ruling out) a different diagnosis, and were not on the path to the problem with my vision. How do you determine if the fault is in your brain? The stimuli has passed through several filters, are you certain the processor is to blame? Are you likely to ever suspect the processor, as it creates the filters and references you use to judge reality?

So I find myself today. I know one of the functions which takes place in my brain is malfunctioning. I don’t know if this is affecting other functions, or if those are malfunctioning on their own, or if everything is fine outside of one malfunctioning segment.

I have always been an emotional person. I feel deeply, I am passionate both verbally and physically. When I got out of the hospital last month, once I started remembering things, I found myself surrounded by reminders of Emma. My grief was overwhelming, I cried so much I would leave the room so I could scream in the pain which was tearing me to shreds. Then I stopped. I didn’t feel anything. I felt no passion or desire for Sam, and although I knew I should have some level of emotion directed towards the woman who leapt from open relationship partner to full time caregiver while waiting for the ambulance, even the apparent emptiness of my soul only troubled me on an intellectual level. Nothing affected me, I used to cry over commercials, dance to rhythms of the road, laugh at inappropriate moments,  and suddenly I was flat.

I do not think it requires a leap of logic to suspect the remainder of your mental facilities when one function of the brain isn’t working properly following a concussion, and I don’t remember much of the week following the accident. This just seems to be a reasonable precaution, along with avoiding heavy machinery.

I am not sure in which way or ways I should approach the question; how to elicit an answer (tests), how to measure and interpret any results. My mind is a carnival, every barking dog and stick of candy floss an important part of the tapestry, which is the gold thread and which the brass ring?

Lacking any formal training, and allowing any lapses in judgement, it appears I will need to reconcile every item I find, taking inventory of what holds me together, should I care for that revealed or not. I should enlist assistance for the task, and a brief perusal of psychiatrists who accept Medicaid produced zero results within the state. I feel rather strongly no shortcuts should be taken, the blossoming questions rise as a cloud from a bonfire off in the field, drifting across the moonlight as it paints the faces awaiting the carnival’s fireworks display.

And I can’t tell if this prose is an elegant indication of wellness, or an abstruse intimation of infirmity.

 

 

I will be waiting a few more weeks for cognitive therapy, it seems odd to me there are so few therapists available, the need appears overwhelming. So many unconscious sufferers wandering aimlessly. I joined Luminosity at the suggestion of my neurosurgeon, at least I will be exercising my neural net, keeping blood and electrons flowing. The other practice I have been applying in trying to find my emotional base has been following “inspirational” web pages, reassuring thoughts and mantras usually presented as memes. The greatest power I realize from these memes is the recognition I am not alone, someone else has produced the same thoughts I am pondering.

 

"Soul Speaking" Inspirational page

Soul Speaking” Inspirational page

 

The eventual remedy lays in memory, remembering who I am, verifying the memory represents reality, and living the life of the man who not only has been this person in the past, but is this person today. Social therapy, spending time with people who know me, can only provide the strength to separate the music from the static, provide reminders of laughter and passions. When I find I can dance to the music I have uncovered, there will be reason to believe I am on the right path toward experiencing passions again. I can acknowledge the possibilities are endless, opening my mind to the breadth of the spectrum, but only one wavelength belongs to me. I think it is just about 400 nano meters.

 

 

It’s a wonderful carnival, I’m staying all night.

 

Evaluating wellness

Shortly after I was diagnosed with Multiple Sclerosis I began to detest the question “How are you?”

“I’m fine” is not a proper answer, for one thing, hair is fine, not people. I might be pushing everything I have to appear I am operating within normal parameters, but I would never reveal this truth. If I have to tell you how hard I’m trying to stand up, then just standing up wasn’t good enough. I am almost certain the person asking does not really want to know all the things I am doing to look “fine” in the hopes no one will ask me how I am.

Today, almost thirty years later, the question is as difficult as ever.

After three decades of disguising myself as healthy, I don’t know what else to do. I have been fortunate in many ways, I do not appear to have aged, and I have played the part of reasonably healthy younger man well. I have not needed to adjust my act, and became emboldened by success. Then, like the roller coaster at the end of the ride, there was an immediate change of velocity. As one friend said of his experience “I woke up one morning and I was old.”

I woke up in the hospital and I was old.

This is the part I have found troubling, referring to it “like the roller coaster at the end of the ride,” feeling a sense of conclusion. Stuff happens, I have known this for thirty years at least. I have friends with Multiple Sclerosis who have lost the ability to walk, and have had to make a multitude of adjustments in life. I have known many people who were simply struck by ill fortune. I have known others who have not survived. I am, as I knew, fortunate. For some reason this has not made the adjustments any easier.

As I begin to recover from my “accident,” I am finding my recovery will not be as complete as I might have hoped. I will not be one hundred percent of what I was, but I will be closer to one hundred percent of the average fifty seven year old white male. Well, not in mass, but in many other ways. Even now, as I push my recovery, I am told I am doing too much.

I try to take this all seriously, because I am not certain about my mental facilities. What if they are right, and I really shouldn’t be trying so hard?

I gave driving a great deal of thought, determined to examine all the variables. I can turn the key, and although it takes both hands to move the gear shift, I only need to do that at slow speeds, such as parking. I have always driven with one (my left) hand. I can manipulate all the controls and see all around me. I do feel fatigued more quickly, driving a little more than an hour each way is all I care to try at this point. My doctor still feels it is a bad idea, not exactly chastising me for driving to an appointment the other day, but making his disappointment known. I knew I wasn’t ready to hit my old haunts (and their additional impairments), but now I feel the need to back off a little more, be a little safer.

I start physical therapy next Friday for my elbow, I’ve already been advised it will not be functioning as well as the other. I’ve been told a number of things about my body over the years and prefer to just see what happens, knowing the range of motion is expected to be reduced gives me a goal to exceed. My fingers are already moving fluidly, I’ll be making music as soon as I can figure out how to hold the guitar. Drumming is out for now, until extending my arm doesn’t make a sound of its own. I also begin “cognitive therapy,” which will be interesting and probably fun. Unless someone determines I have suffered excessive brain damage, which is bound to throw my confidence into a black hole.

My eyes, and the bones which hold them in place, are the subjects of Monday’s appointment. Something must be physically wrong for my vision to change the way it does, focus shifting as I stare forward. I just need everything to stabilize before getting another prescription for lenses. And there I go, assuming everything will stabilize. I spent my life making things work, I’ll hold my eyes in place with duct tape if I have to.

Wednesday we’ll be investigating why I can’t hear through my right ear. It had been getting a little weak, but since the accident the hearing on that side is gone, and although I was in a haze in the hospital, I do recall hearing one of the doctors saying he thought something was wrong which could be adjusted during the skull surgery (which didn’t take place because I kept healing).

The following week I begin catching up with all the health issues I’ve let go since Emma died. My new general practitioner was amazed I wasn’t reduced to dust in the fall, my osteoporosis has been untreated for seven years. So a new Dexa Scan and rheumatologist for treatment are in order. A new Neurologist seems an obvious choice, so an MRI is expected. The doc wrote prescriptions for my antidepressants, but a shrink is certainly on my horizon, there are a number of issues which need to be addressed; I am not the man I was 31 December, I know this for certain as my emotions have flat-lined. And of course there are still follow ups with the neurosurgeon to determine what physical damage to my brain still exists.

So, with my usual duality (good sign), my evaluation of wellness is I am better off this happened, it steers me towards treatments, but the happening itself has been awful. I have lost independence and ability, I feel “old.” I am not ready to feel old. I have a certain presence, a style which may need to be adjusted to fit an old man. It may be a mostly temporary situation, but the rest of me is not getting any younger. This is happening all at once, rather than complain I failed to prepare, I will try to rejoice I have been so healthy so long.

These are just the physical and emotional issues I am dealing with, a subset of the emotional issues are affected by the financial state of being unable to earn a living. I have never had to ask for help before; if you have not already, please stop by the GoFundMe page set up by a friend to help carry me through these difficult times. Even if you cannot help financially (maybe see it as supporting a suffering author?) perhaps you can use the “poster” button near the bottom of the page and print out a copy to share with friends. Great conversation possibilities there, and perhaps I’ll gain a reader through your good deed.

I once met Buddy Rich, his advice on drum solos was “take something simple and make it look hard, or take something hard and make it look simple.” This is hard for me, I hope I am making it look simple.

How am I doing?

Oh, and being able to shave would be nice

Oh, and being able to shave would be nice

 

Suicide notes

 

 

 

Suicide notes are the final statement, last words for someone who doesn’t believe anyone is listening. They are the message someone wants to share which sums up their life (as viewed through the depression which has led them to end that life). They can be filled with blame or despair, or they can simply be an explanation of a rational decision (Yes, it is my belief suicide can be a reasonable choice). I’ve read a few suicide notes, some celebrities, some acquaintances, and of them several have been quite rational.

When I say suicide can be a reasonable choice, I am not speaking about euthanasia for the terminally or chronically ill. I am speaking of circumstances in which the reasonable expectation of a satisfying and productive life have been removed. And no, I’m not suggesting a permanent solution for a temporary problem, I’m saying it is indeed possible to be trapped in a meaningless life, the problem is permanent.

As a chronically clinically depressed person, I can identify with the suicidal. I’ve certainly considered the act. I’ve been honest enough to admit it and been placed under observation. If there is a doctor out there who can explain how being incarcerated in a hospital room with no contact is supposed to return the will to live, I’m listening. It just teaches you to lie when asked if you’re going to hurt yourself. I did not, in fact, wish to kill myself, I just had no desire to live. I refer to it as “passively suicidal,” I still look both ways before crossing the street. My decisions about my life are no one’s concern, no one’s responsibility, until I decide I no longer wish to suffer. Then everyone has an opinion, usually an uninformed opinion. Speaking for myself, you do not know how I feel, you are not me. You have not survived over two dozen years with my case of Multiple Sclerosis, you have not watched my wife die, you have not watched the collapse of my dreams from my vantage point. I keep these things in mind about you when considering your choices, please extend the same courtesy to me.

A couple of noteworthy authors come to mind, and while they were active participants in ending their lives, they had given the act a good deal of thought and just ran out of reasons to stay alive. Ernest Hemingway’s note, written after months of illness, expresses many of my current feelings. He was disappointed with his legacy, and disgusted with the poseurs of the world.  His summation was (of course) classic Hemingway, “But here’s the beauty part. Forty, fifty years from now, when all the wanna-be Hemingways are old and fat and their chin-fuzz is fried to bristle and their huevos are dried up like figs in a dusty street… But they still want to do it all like Hemingway…They’ll have to eat a shotgun too.”

Hunter S. Thompson wrote a note I can identify with, even though I don’t care for football. Titled “Football Season is Over;” No More Games. No More Bombs. No More Walking. No More Fun. No More Swimming. 67. That is 17 years past 50. 17 more than I needed or wanted. Boring. I am always bitchy. No Fun – for anybody. 67. You are getting Greedy. Act your old age. Relax – This won’t hurt.

It doesn’t have to hurt. It’s all a matter of removing the central nervous system from equation, understanding the life process and how to interrupt it.

So here I am, a birthday looming on the horizon (only seven years past fifty), glory days in the past, and a series of disappointments in everyday life. I had made every effort to be out of this country before the election cycle began, but here I am, faced with two absolutely scary prospects as presidential candidates, and a populace torn over which sociopath to rabidly support. I had really hoped to avoid this. There’s a television at work, and I have to concentrate on not laughing out loud at the news in front of my co-workers. They actually take this stuff seriously, which highlights just how out of touch with reality the majority of people are. I find myself unable to relate to people, lots of people, the overwhelming majority of people. There are so many more issues, but this is not my suicide note.

Suicide is ostracized, making life difficult for those left behind, if they care what other people think. The fact is, all life ends. It is random, you could be hit by a falling aircraft while eating dinner. Your friend was not going to live forever, so it doesn’t matter if it was suicide or cancer that took him. Actually it does. Suicide is an act of ownership, taking responsibility for ending a life no longer worth living. It is not cowardly or an escape, it is an act of control, a conscious choice of path.

All of my religious influences have been strongly opposed to suicide. “Life is a gift from God, suicide is throwing away that gift, an insult to God.” We each have our own vision of our judgement day (Emma’s was cartoonish), I see it as an acknowledgement of my life to my creator. You can visualize it as a straightforward exchange across a desk (or a child begging for mercy, depending upon your temperament), but the conversation is taking place every moment, at the end we just make contact and I find out if my beliefs are correct (or not). Perhaps such a responsible point of view is unusual. This could very well be why suicide is so misunderstood, people who live their lives never actually taking responsibility for anything, judging those who have taken responsibility and faced the consequences.

You don’t know how it feels. Even if you have walked along the edge, it was your edge, you don’t know this one. Carry that lesson forward, apply it to all of your judgements.

 

 

The Ice Bucket Challenge

If you had not before this Summer, you have certainly by now heard of ALS, sometimes called “Lou Gehrig’s Disease.” Raising money and awareness through the Ice Bucket Challenge has placed ALS in the spotlight.

I hope.

Amyotrophic Lateral Sclerosis is a neurodegenerative disease that affects the motor neurons in the Central Nervous System (CNS). “Amyotrophic” can be translated to “No muscle nourishment,” what is actually happening is the neurons which control the muscle have died, meaning the muscle can no longer be controlled voluntarily. “”Lateral” describes the portion of the spinal column in which the neurons are located. “Sclerosis” is a term for scarring,  referring to the hardening of areas in which the neurons have died. As ALS progresses in a patient, the degeneration of the motor neurons causes paralyses, If you recall Stephen Hawking, 40 years ago he was wheelchair bound and mildly spastic. He was able to father children and have a relatively normal life within his accommodations. Today, his communication is limited to a synthetic voice controlled by a computer, which he operates with his cheek muscle, one of the few muscles he is still able to control.

Like Lou Gehrig, Stephen Hawking is a famous person putting a face on the disease, which is relatively rare, affecting about two of every one hundred thousand people, about 140,000 people in the world, 6300 in the United States. There is no cure or treatment to end or reverse the degeneration, but a drug from Sanofi-Aventis, Riluzole, may slow the progression of the disease. It’s hard to tell with statements such as that. Stephen was diagnosed with ALS over fifty years ago, life expectancy is rarely more than ten years after diagnosis. My own experience with chronic disease has been some drugs work for some people, each case is different. I was diagnosed with MS twenty five years ago, none of the drugs that have been developed work for me (in fact a few made me worse), but my outward symptoms are barely noticeable. On the other hand, one woman who was diagnosed at the same time as me died within six months.

I have a friend who has been raising money for the ALS foundation for years. Every February she is involved in a “Valentine’s Day Plunge” in Manasquan New Jersey, in which people are sponsored to jump into the Atlantic surf to raise money for ALS research. In a bizarre twist of fate, her husband was diagnosed with ALS last year. She has organized a benefit for her husband Danny, and will continue with the Valentine’s Day Plunge, but she also has made popular among our circle of friends the Ice Bucket Challenge, which has now “gone viral.” I don’t know where it started, but we were doing it before it hit the news.

The idea behind the Ice Bucket Challenge is to raise money, but in popular culture it has turned into “raising awareness.” Well, a lot of people now know about dumping a bucket of cold water on themselves, but I don’t know that many know about the disease or are making contributions. Thus this article.

No amount of cold water or awareness is going to curb ALS, or any other disease. Awareness is certainly nice, with eighteen times as many patients, MS is largely misunderstood and I do find it quite annoying when people misinterpret my condition. Since I was diagnosed eight treatments for MS have been developed, none of which work for me. There is one drug for ALS, if it doesn’t work for you you have no other avenues. It could be worse, I had a friend in the Police Department I worked in who developed a disease only three other people in the United States had. He was the only guinea pig when research needed to be done. He vacationed at the NIH each year, no drug companies were interested in a drug that would have a handful of customers.

There is more than research that your donations provide. Most organizations provide support for patients as well. The American Cancer Society provided transportation for Emma to get to her Chemo and Radiation treatments, and provides wigs for patients who lose their hair. The MS and ALS foundations have outreach programs to assist with the daily needs of families affected by the respective diseases. Government funding is drying up, so not only do contributions go directly to research, they also pay for lobbyists to promote funding in Congress.

Being aware is not enough. Caring is nice, but only a sociopath doesn’t care. Money is what will make a difference. This year the Ice Bucket Challenge has inspired a flood of donations to the ALS association, $94 million so far. In reality that isn’t much money when you consider the price of laboratory equipment and facilities on top of the daily assistance provided to ALS patients, it amounts to roughly $671 per patient (worldwide).

 

10593069_10152616338645926_5189457870798239811_n

If you do not have the money or time to give, at least educate yourself about these diseases. Understand what that friend of yours is going through. That alone can make a world of difference.

Choosing a doctor

A few years back, while living in South Philadelphia, we decided to change primary physicians. The most surprising thisg we learned is that most people don’t give much thought to the choice.

When we first moved into the neighborhood, we just chose the closest doctor, a guy with a multiple partner practice within walking distance. He was very popular in the neighborhood, it didn’t take long to figure out why. Despite being near impossible to reach by phone to set up appointments, Doctor “A” had a thriving practice. He accepted every insurance plan, and once you were in the office, the wait in the waiting room was short. He used medical students as interns, so his time with the patient involved saying hello and writing prescriptions. He wrote a lot of prescriptions, all you had to do was ask and he would write one for anything.

We were more interested in a doctor that was interested in our health, so we started shopping. We interviewed a few, and most were shocked that we had standards we expected to be met. We expected an office staff sufficient to answer the phone when we called, or at least return a voice message within an hour. That knocked half a dozen practices off the list. We expected the staff to be polite and fluent in English. Scratch off anther three offices. We expected a clean office and waiting room. Another two down. We expected to see a doctor, a person who had graduated from medical school, for examination and diagnosis. The list of practices kept getting shorter.

Finally we got down to interviewing doctors. The shock on their faces when we answered the question “What seems to be the problem today?” with “We’re choosing a doctor, and want to get to know you” was cute at first, but by the time we got to the third candidate it was annoying. You could feel an attitude of “What right do you have to make a decision about my qualifications?”

We made a decision, Doctor “B” was right down the street, and we saw him a couple of times over the next year. The third visit I sat in the examination room waiting for him, and was able to hear every word on both sides of a conversation he was having on the speakerphone in his adjacent office. So much for confidentiality, and I was unimpressed with the way he discussed this other patient’s issues with the other doctor on the phone, making more comments about her personal life than her medical condition. Then he entered the examination room, my file in his hands. He sat down, thumbed through the pages, and said “So how is your diabetes?”

I don’t have diabetes.

I told him I didn’t have diabetes, my issue was multiple sclerosis, and he shook his head and looked closer at the file. Then he turned it right side up. Then he put on his glasses, saying “looks like I need to have my eyes checked again, haha.”

I slowly stood, maintaining eye contact with him and said “You’re fired. Your eyes didn’t get any worse while you were sitting here, so that thumbing through my file was just a show. If I wasn’t clear enough in the beginning when I told you I need a primary physician who would treat me as a person, perhaps you can remember this” and I walked out the door.

We tried our second choice, and kicked ourselves a few times for not making him our first choice.

Doctor “C” had a small storefront office on Broad street, a bit further to walk but there were a couple of different bus or subway choices available. One of his nurses would bring her dog to work, but the dog stayed in the filing room and everything was clean. Doctor “C” turned out to be one of the best doctors I’ve ever dealt with, and I had already dealt with quite a few. A few years later, when Emma developed cancer, doctor “C” went from being a good doctor to being a great doctor, I considered him a genuine friend. When she received the diagnosis, he sat with us, holding our hands, and said “Pray for God to guide your doctors,” he filled in when the specialists she was seeing made mistakes or overlooked details, and made our lives better during the very worst of times.

I realize that anyone with a passing average in medical school can become a doctor. Some doctors will be naturally better than others, some will be friendlier, and the doctor you find will be in your area. We were fortunate to find Dr. “C”, had we simply behaved like sheep and stayed with the first doctor we met our lives would have been worse.

My advice is to make the extra effort, find a doctor you trust, because when you need a superior physician, it is too late to start looking.

 

 

And now, a random yahoo on the street

In the classical sense, an opinion is based on understanding a subject. We all may have differing opinions, but the subject is static, Our opinions may vary based on differing levels of understanding, or on differing priorities. If someone has differing priorities, you can reach an agreement that you both understand the issue and do not agree on the implications. If someone does not understand the subject but will not let go of their opinion, there is no point in discussion, they have nothing to teach you about the issue, and they do not care to learn anything from you.

This is why I love popular discussions. I have learned the most from people I disagree with, sometimes the enlightenment has caused me to change my opinion, sometimes it has reinforced my opinion, but I do my best to separate my opinion from “the facts”. Apparently that skill is not as appreciated as it once was, the power of opinion seems to be more valuable than the power of facts these days.

An example would be our president. I don’t like him. I find him to be a poor president, but I do not think he is a poor leader in every sense. He certainly has a fanatical strong following, I just don’t care for his methods or where he appears to be leading the country. I don’t care what race he is, or which religion if any he follows. I have had discussions about his qualities, and can acknowledge the things that he has done right. When I am in a discussion and someone brings up the “fact” that he is Muslim,  my first response is “Our constitution guarantees freedom of religion, his religion is not pertinent to his leadership”, usually followed by “and he claims not to be Muslim anyway.” If the person I am talking with is basing their opinion on false information that has something to do with what we are talking about that is one thing, if it is based on irrelevant information their opinion is even more distorted. It goes both ways. If I say “Obama is a lousy president” and the response is “you’re a racist” I attempt to enlighten my adversary to the notion that his color is unimportant, irrelevant to my opinion. If their opinion is based on the belief that any disagreement has nothing to do with the issue but is instead based on irrelevant information, their opinions are as distorted as the person who is biased against him because they believe him to be Muslim.

I have had the benefit of a wide breadth of experiences, and have also been blessed with a few intellectual tools such as curiosity and insight, so I’ve learned a lot about a variety of subjects. I am a rarity, in that I recognize the limits of my understanding and try to learn more.

We are bombarded by opinions, with few facts to be found in most conversations. Slowly there has been a shift from relevant facts to popular opinion, and while someone with no basis upon which to form their opinion might be interesting to listen to, they are not furthering the understanding of the subject.

During the search for the missing Malaysian airliner, facts have been thin so space was filled with opinion. Even Courtney Love came forward as a photo interpreter. Having spent some time with people who spent careers interpreting satellite images, I understand the intricacies involved. Courtney Love’s opinion was immediately dismissed because she was Courtney Love, but when the Prime Minister of Australia came forward he was taken seriously. Neither was a trained photo interpreter, and my friends and I all had a good laugh at the surreal nature of taking a celebrity opinion over an expert analysis. The entire world buzzed anyway.

This morning, on a web site devoted to astronomy, a woman asked where she could see the two stars in the sky. She had seen an article about it on the internet. A few people were quick to remind her that stars do not travel into different systems, and at least one person suggested she could see two suns on Tatooine. She is a regular on the site, and probably considers herself an amateur astronomer, I just hope she isn’t dispensing her opinions on astronomy to her friends as facts.

I have friends who are avidly against Genetically Modified Organisms (GMOs) in food. There may be valid reasons for their beliefs, but until there is documented research showing GMOs are in any way harmful, their beliefs are based on fear of the unknown. This dovetails into Anthropogenic Climate Change (AGW). When an actual scientific study produces data indicating there is an anthropogenic element I’ll take the issue more seriously, but presently a political organization is the only source of alarms, so I have to view the issue as political. Are there perfectly good reasons to control pollution? Absolutely, but they have nothing to do with climate change. I have seen office workers treat used toner cartridges as toxic waste, because they believed they were filled with carbon. Sorry, there is no carbon in the empty container, it has been printed onto all your copies, and carbon is inert, totally safe unless you inhale it in high concentrations. You exhale more carbon than you inhale every time you breathe.

These examples bring me to food allergies. Celiac disease affects one percent of the population, and has serious consequences for those affected. Half an aisle in my supermarket is devoted to gluten free products. There is no reason to avoid gluten if you do not suffer from celiac disease, yet the products are very popular, there’s even a quinoa vodka which is advertised as gluten free. In case you were not aware, all vodka is gluten free, as gluten is cooked out during the distilling process. In the same way that a mattress made from aloe vera leaves (I have seen them) has no affect on your skin, quinoa vodka has no unique benefit if you are avoiding gluten. Someone with celiac disease would know that, which is my point. Fear of a substance is marketed to people who have nothing to fear. Their opinion on gluten has been formed based on an impression that gluten is bad for everyone. Several of my friends go out of their way to avoid gluten, but only three of them have any need to do so.

Opinions about subjects fire intelligent discussions, and I honestly believe that positive ideas bubble to the top. When I was first diagnosed with multiple sclerosis (MS), the accepted medical opinion was stress does not exacerbate MS. I suggested to my neurologist directly, and to several others through other patients, that stress exacerbates the impact of symptoms, so from the patient’s point of view, stress does exacerbate MS. Within a few years the opinion was being discussed in medical circles, and today the link between stress and MS is widely accepted. Change is slow, but in scientific communities a rational argument goes a long way.

A reasoned, rational argument can break any barrier, an uninformed, irrational argument builds barriers where there were none. Knowledge is more powerful than you might imagine.

 

 

Gelukkige Verjaardag aan mij

Today I am closer to sixty than fifty. The cynical young man some of you never knew rarely peeks out anymore, it’s the amused fatalist who drives this ship most days. I’ve made my mark on the world, but unlike Hunter S. Thompson I haven’t stopped finding the world remarkably fun. There are dark days, but there is always the promise of sunshine ahead.

I have found that the way to keep laughing is to find the humor which clings to every event. I know that sounds cliche, but just like silver linings there is something to laugh about in every disaster. Of course, people will think you’re unbalanced, but the truth is balance is in seeing the light in the dark.

Today we’re going to MoMA, the Museum of Modern Art, to see an exhibition of the artwork of René Magritte. Magritte’s “realistic surrealism” has always been a source of joy for me. More so than the work of Salvador Dali, Magritte is subtle. From my point of view, life is surreal, with subtle touches of realism providing anchors to reality.

Magritte's mermaid

Magritte’s mermaid

This is the world I would portray when I would sit in on my girlfriend’s art class. Her teacher would insist that I create as long as I was there, so I would draw a landscape with a few odd features, such as a light bulb instead of the Sun. Mr. Czajkowski said I’d never be an artist, which any artist would find hilarious in itself. I found it difficult not to laugh out loud as he tried to emulate Pollock by pouring paint from a six foot ladder, insisting on reverent silence during his “artistic moment”.

I received an email from Godiva wishing me a happy birthday, if you’ve been following my rants about Godiva’s “ghost store” at Quakerbridge Mall you’ll know why this one made me laugh. I’ve printed out the email and will either be using it at Quakerbridge or I’ll be taping it on the window if the store which was supposed to open in October is still not open.

Outlook - k.blakecash@hotmail.be 2013-11-12 15-33-36

There is always something to laugh about. A number of friends with Multiple Sclerosis have adopted the motto “You can either laugh or cry in response to any situation, I prefer to laugh”. I’m not talking about pseudobulbar affect, I’m talking about making the conscious decision to laugh at life’s circumstances. It’s not difficult to do, and it helps growing up with Ed Wynn.

Charity

Charity is something of a buzz word. “Oh, it’s for charity”, is an excuse for just about everything. There is a story of a man who started in an office, and put a cup on his desk with a sign reading “Give to the children of Israel”. All the other employees wanted to start things off friendly and would walk up to his desk and put some coins in the cup when introducing themselves. He would always smile and say “Pleased to meet you, I’m Nathan”. Later that week building services came in with his name plaque. Nathan Israel.

Typically we support charities because they serve a cause that touches our lives. When I was young I contributed to the Arthritis Foundation, because my grandmother had suffered her last years with arthritis, When I was diagnosed with Multiple Sclerosis, I not only contributed but also was involved in fundraising for the National Multiple Sclerosis Society. When Emma was diagnosed with Pancreatic Cancer I became involved in the Pancreatic Cancer Action Network, and also contributed to the American Cancer Society, because they helped us so much. Now we also contribute to Musicians on Call, a group which provides live music in hospital rooms. In a sense, although I have been very generous through the years, it was all self serving.

I donate to the causes of friends and their children, but there are some charities to which I will not donate. United Way has had a very poor record of getting donations to their executives instead of the needy. I don’t donate money to the Red Cross because they won’t take my blood. I don’t donate to Greenpeace or the Sierra Club because they are political organizations and not environmental groups. PETA hides it’s agenda from it’s members so it’s out. Other than that, I’ll help anywhere I can.

I have friends and family who are involved in long term charitable projects, my father travels to areas without clean water and installs reverse osmosis units. His group has provided Haiti with more clean water than they had before the 2010 earthquake, others have traveled the world building orphanages. One friend lost his home in Hurricane Andrew, and has since invested thousands of hours and tens of thousands of dollars into rebuilding projects after disasters here in the States. I’ll be working with him and a group from our High School at the Jersey Shore next week, repairing damage left from Sandy.

I mention these things because I often forget the charitable impulse in others. I see the press releases about how much money Bill and Melinda Gates have given to the Bill and Melinda Gates Foundation, or Oprah Winfrey to the Oprah Winfrey Foundations, and I have the same feeling as when Annette Funicello started the Annette Funicello Research Fund. Why create a charity to accomplish the same goals other charities are already tackling? Why create another bureaucracy with high paid executives instead of using existing infrastructure and putting more funds into the hands of the people who need it? Is it merely a tax dodge or publicity vehicle?

I realize the desire for a legacy, having things named for you in recognition, but when the only things you do are for your own name, I just don’t get it. My grandfather endowed a scholarship, and named it for his parents, but it was inconsequential to his total charity work. Something about seeking recognition for your good deeds tarnishes them in some way. It doesn’t even occur to me to take tax deductions for my charities, it doesn’t amount to much anyway, but to issue press releases seems overly self serving.

I’m sure the Gates, Oprah, and Annette have done good work, but isn’t that supposed to be the point? I don’t know about you, but I don’t feel moved to donate to a charity just because it has someone’s name on it, particularly when that person is in the news for buying a $38,000 handbag.

I don’t need to “feel good” about celebrities for their charitable works. It is good to know that they do something, but I just want them to do their day jobs. Most people give of themselves, it is neither special nor newsworthy.

Obituaries

I hope that after I shuffle off this mortal coil, someone writes an obituary about me as elegant as this one.

Yvonne Bleiman transitioned from her mortal body on August 20, 2013, after suffering from severe injuries after being struck by car as she was crossing the street with a friend. She left us while experiencing unconditional love from those closest to her and while embracing all those forms of religion, spiritualism, and mysticism that will support her on her journey and assist her continued watchfulness over her family and friends.  Yvonne arrived in Princeton with her husband, Junius “Jay” Bleiman and her daughter, Rebecca Anne, in 1966 after living in Athens, Greece.  The most important part of her will always be here with us, while the molecules and atoms of her existence will be buried alongside her adoring husband, Jay, at West Point where they had met in 1959 one fateful night at the officer’s club where she was serving as a military nurse/officer.   Like the bird, the heron, which she admired and was  inspired by her through her interest in Native American mythology, she too was the essence of a free spirit.  A true artist, she had the ability to accomplish things in ways that others may not, and possessed a  confidence in her uniqueness. She was gifted with the physical, mental, and emotional powers of balance and adaptability, self-reliance and determination, and was not easily swayed by the opinions of others.  She trusted her own instincts and, in the end and forever, symbolized transformation and a peace within the changing.   We will miss the grace and beauty that only she could have brought to the world and taken with her to the hereafter.  Her daughter, Rebecca, her grandchildren, Olivia and Jay, and her brothers, “Skip” and Bob Nelson of Seattle and her partner Greg Moore will continue to celebrate her life and greet her in all they see – trees, flowers, birds, butterflies clouds, animals – and in everything else that is beautiful, special, and vulnerable.   Yvonne was not one to believe in obituary’s and when reflecting on how she wanted when her final journey arrived, she shared with her daughter to let all of you to know that “it was fun!”. 
A small memorial tribute will be held on September 15th.  Donations can be made to the Rock Brook School 109 Orchard St. Skillman, NY 08558 where Yvonne had been a teacher for many years.
I find odd the line that says she “was not one to believe in obituary’s (sic)”. If she didn’t care for obituaries, why write one, even one as beautiful as this?
When Emma died, I wrote her obituary from my heart within hours. She had not wanted a ceremony or memorial so I did not hold one. She initially only wanted me to keep her ashes in a box, I published the obituary in her blog, you can see the entire month’s activity here, this is what I wrote the day she died:
My friend, confidant, lover, cooking teacher, music student and wife died this morning at 6 AM.  She was sleeping peacefully and holding my hand when she stopped breathing. She had a very rough night, I was glad that we were in the hospital rather than at home. Her pain medications were being updated on an hourly basis. Her kidneys had failed along with her liver, the pressure from the swelling made her feel the need to urinate but her bladder was empty. At about five she looked at me and said “I can’t fight anymore” and she closed her eyes. I held her hand as she lay sleeping, telling her that the time apart would seem to her like an instant from the perspective of eternity. I quoted Bible verses and reminded her of God’s promise. At about six she stopped breathing. I kissed her and called the nurses, there was no pulse. I was able to stay with her as I tried to call friends and family, due to the hour and the holiday weekend I mostly spoke to answering machines. I held her hand the entire time, when it came time to wash her rigor mortis had set in, her hand stiff and curled around mine. I washed her, gently caressing the body that had once been so full of life, now just an empty container. I stroked her hair and kissed her face and neck, then helped place her body into the bag and onto the gurney. I watched as she was rolled away and packed her things, including the plant she had received just two days earlier.  This afternoon I stopped at the funeral home and realized how little I know about her family, I had no idea of everyone’s name that would go in the obituary, and decided that a generic “well loved by her many friends and family” would be the best route. I picked out an urn, actually only narrowed it down to three, I’ll have to go back with her cousin to make the final choice.  I grabbed a sandwich and now realize that I haven’t slept  in a while. I have a lot to do this evening, but I know it will all be there tomorrow. She is still alive in all of our memories. She is still alive in God’s loving arms. She made me a better person,  and I must honor her by being the best person I can be until we are reunited.
I would be happy if someone could convince me they feel strongly about me now. I lived with a woman once who was fairly abrasive, but whenever she spoke to her father she made sure she told him that she loved him. She never told me she loved me because she didn’t, but it was important to her that everyone knew where they stood with her. For that reason, I did love her.I really don’t need those kind words when I’m no longer around to hear them, to appreciate them, to reciprocate them. It’s a nice thought that people will say nice things once I’m gone, but part of my saying nice (and not so nice) things now is that I would like them to be reciprocated. I feel the same way about tears. If you have shared your emotions with me in life, there is nothing to cry about. If you haven’t, there is no point in crying when I’m gone.Please do not keep my body alive so long that my organs would be useless to others. I would like whatever organs I have that may be useful to others to be donated, and what is no longer needed to be cremated. The cremains I would like scattered, as far and wide as possible. Anyone is welcome to take a portion and spread them someplace you feel is meaningful, and perhaps my cousin will take anything that is left and release it into the gulf stream at about thirty thousand feet.

If there is to be a ceremony, I would like it to open with a traditional version of the hymn Jerusalem, and close with the cover by Emerson, Lake and Palmer. Any other music should be inspired by that range. Any and all religious expressions are appropriate, my friends follow God in a wide spectrum of manifestations. And I quite seriously request NO CHEAP BOOZE! Remember me with the beverages we have shared, great wines and beers, and properly made martinis.

I would like to be remembered as one who fixed things. I have dedicated my being to making things work, whether they be mechanical or organic. Faced with the frustration of some things just not being repairable, I have tried to be stoic and graceful. I have asked little more from life than a faithful companion.

I’m not suggesting that my last day here is imminent, but it is certainly unavoidable and unpredictable. I am increasingly aware of the limited nature of my future, and felt the need to share my wishes.
Peace

Serving a life sentence.

I found a few smiles in a recent ABC article about Multiple Sclerosis.

The more I think about it, the more thankful I am to have Multiple Sclerosis. My point of view has changed. My insight into several issues has deepened. My ability to find silver linings has increased. In what some might find an odd statement, I appreciate life more than before.

The first myth the article mentions about MS is that it is a death sentence. But the way the response was worded touched me. “MS is a life sentence”. Yep, there is no cure, I’ll have this for the rest of my life.

Another important one I wish everyone would get is “Everyone’s MS follows the same path”. I’ve known people who got much worse, and believe it or not, a few that are doing better. I’ve known people for whom it has been a violent roller coaster, and many, like myself, for whom it is an “advent calendar”, every day is a surprise.

That falls with the next one, “MS is curable” (See myth #1). No it is not. “Treatable” is a word that must be approached carefully. There are drugs, and they work differently with each person (see myth #2). I tried each of the new drugs as they came out (when I was diagnosed there were NO treatments). They worked to varying degrees, but when weighed against the side effects none of them had an overall positive effect. Some people have had wonderful results, just not me.

Another myth was “You’ll need a wheelchair”. Regardless of your health, next time you go to the zoo, please rent a wheelchair. Tell me how much you enjoy the visit, and the evening afterward. There is nothing wrong with using an appliance to make your life easier, and it just might break down your prejudices. I resisted using a cane until my neurologist said “it will make you look cool”. I thought about it differently, and while I may not be “cool”, I’m not as tired or in pain when I use it, I get a seat on the bus, I have a tool to catch elevator doors with, I get preferential boarding on aircraft and occasionally get moved to the front of the line in security, and I can trip wankers who get in my way (and no one says a word).

You may hear people say “God won’t give you more than you can handle”. In fact, the scripture they’re referring to is 1 Corinthians 10:13, “There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able ; but will with the temptation also make a way to escape, that ye may be able to bear it.” From this I interpret that God will not give you anything you can’t handle with his help. There are countless examples of people who couldn’t handle the challenges they were faced with.

It is my faith in God that makes my life bearable. When Emma was awaiting surgery, I fell and broke my arm on her birthday. I was able to be there for her twenty four seven in the days leading up to surgery and her recovery. It was the best thing that could have happened (other than her surviving cancer).

Another helpful part of seeing silver linings is knowing that this life sentence ends when my heart stops beating, but my life goes on through eternity, not only in the company of the creator, but free from the troubles of this life.

Suffering idiots

The word “suffer” is immediately connected with pain. One might read the title above and think of fools in pain. Today I consider a different meaning, “allow” or “tolerate”, as in “He does not suffer fools”. Although the allowance of fools is indeed painful, the word does not necessarily imply pain.

As much as I enjoy Crosby, Stills, Nash, and Young, one of their songs has been abused by fools for over forty years. Yes, I am speaking of “Teach your Children Well“, a song that might be sub-sub titled “I am an idiot for using these lyrics as justification for my ignorance”. The song does not suggest that children are wiser than their parents, it suggests that all generations need to strive to understand each other. I once lived with a woman who would pair this song with the phrase “From the mouths of babes” to explain why she thought her daughters opinion was superior to hers. Not on occasion, but always. Yes, I have loved morons.

When the same daughter received academic scores in the first percentile, not only did I have to explain percentiles to this woman, but I was asked not to explain them to her daughter, because she didn’t want her to “feel bad”. When the daughter expressed an interest in becoming a brain surgeon, she was encouraged in order to spare her feelings. I lost track of them soon afterward, having never bitten completely through my tongue, but on occasion I wonder whatever happened to them, the daughter would be closing on thirty now, if she survived the crushing blow to her ego that was waiting for her.

Another woman I lived with shortly thought that the music video “Land of Confusion” by Genesis was real. Not just true, but real. She based her political opinions on muppets. In fairness, this may not have been true stupidity but was more likely brain damage. I can’t recall a three hour interval during which she did not smoke marijuana. We eventually parted ways because she felt I was not adequately terrified of a hurricane we weathered in Antigua. Of all our differences, that was the one that annoyed her.

So you don’t think too poorly of me (or maybe this makes it worse), there have been many women in my life, and I am not attracted to idiots, I just tolerate them and am able to weed out inspirational jewels from their unusual viewpoints. A mind that is free of the ravages of intelligence can be quite refreshing. A martini can be refreshing as well, neither should be the center of a healthy diet.

It often comes to suffering, feeling mental anguish, but if I only sought out people exactly like myself, I would be very lonely. Not because there are few people like me, but staring at one’s reflection must be isolating.

The two edged sword of technology is that with universal access, there is no filter. The viewpoint of the genius and the moron stand side by side on the internet. You have no way of knowing my credentials, if I am intelligent or just egotistical, from a single article. Over time you most likely realize a constant tone, and you either agree or disagree with the point of view, and it is my hope that you find a reason to reference me as a reliable source of information. I come from a long line of teachers, and it is always my desire to inform and educate. I don’t expect to be profound every day, just often enough for you to keep coming back.

My tone can be acerbic, there was in fact a time it was my only joy, the “inside joke” with myself as I worked in a field surrounded by fools I had pledged to assist. One client was in the habit of calling me “Doctor House”, after the television character portrayed by Hugh Laurie. The nick name fit well enough that my wife gave me a cane with flames painted on it. Although I rarely need to use the cane anymore, I do carry it when traveling, “handicapped” people get preferential boarding on aircraft, and do not stand in line at security checkpoints, so I consider it one of the few positive aspects of multiple sclerosis.

We all have our place, and our value, in society. It is not up to any of us to judge the relativity of that value, as without all of us, none of us could enjoy a full existence. It is through understanding a spectrum of viewpoints that our own has any validity.

Medical marijuana

There has been a long term debate over the effectiveness of marijuana as a pharmaceutical. This debate was spurred by marijuana users, trying to get it legalized, so for the longest time I didn’t take it seriously. Over the last few years, I’m not sure what to take seriously, so I’ve reevaluated a number of debates.

I’m not going to get into the economics of hemp, and what a valuable and versatile crop it is. It’s not that I doubt it or endorse it, I just haven’t researched that area. Hemp is fibrous, and was initially used for ropes, and can be used for many purposes that other products are used for now. Poppies are pretty, but opium is still a hazard to society.

Marijuana is for the most part a recreational drug. Not so surprisingly, so are a large number of prescription drugs. In a world of  multi-tasking, why are we surprised that a drug can have multiple uses? Having gone through all the drugs Emma was prescribed during her cancer treatments, I found many of the drugs she was given had alternate uses. Except marijuana. She was prescribed Marinol, a synthetic form of tetrahydrocannabinol (THC) the active ingredient in marijuana, to help with her nausea. I’ll never know if it worked better than the other drugs available (none of them worked at all), because I couldn’t get the prescription filled. When I showed it to the pharmacist it might as well have been on fire, he wouldn’t actually touch it. He backed away and said “You can’t get that here.”, and when I asked him where I could fill it, he said “I don’t know, not at any xxxxxxx (name of the pharmacy chain)”. As it turned out, I was able to locate a natural source from a compassionate friend, and I can verify that the natural product worked exceptionally well.

You might wonder why there is such resistance to a legal therapy. Marinol was a class 2 drug (now class 3), and I was able to obtain several class 2 drugs at the pharmacy. If you opened the link above on abused prescription drugs, you noticed that many of the popular drugs are class 3, 4, and even 5. Why such a fuss over Marinol? Well, it’s because of the fuss over marijuana. Marijuana is a class 1 drug, along with heroin, lysergic acid diethylamide (LSD),  3,4-methylenedioxymethamphetamine (ecstasy), methaqualone, and peyote.

If you’re over thirty, you have known people who use drugs. You know the difference between someone using heroin and someone using marijuana. You can tell from a block away. Our Drug Enforcement Agencies cannot. Not because they’ve never inhaled. Because they’ve never done enough research to determine that you have to inhale in order for it to work.

Again, maybe because the only people calling for research were a bunch of pot-heads, serious research was rarely conducted. Oh sure, they performed studies on other class 1 drugs, but marijuana was taboo. The main reason put forward in the 1936 film “Reefer Madness“, is that it can’t be controlled, anyone can grow it in their back yard. That is the fear, an unregulated drug.

A number of people have come forward and said that marijuana is the only relief they have from Multiple Sclerosis. There has been evidence it is useful in treating Glaucoma, nausea following chemotherapy, and even cancer itself. A few states have legalized medical use, and in states like California and Colorado you can obtain a prescription from any doctor. A recent study suggested that one side effect is forgetfulness, but again, this was not serious documented research. Dosage of Marijuana is not controlled well enough to determine if that’s a side effect, or if left to their own devices, people use too much.

In New Jersey, only certain doctors are allowed to prescribe marijuana (there’s one in my county) and they have to provide documentation that you are a long term patient, and follow up documentation on your progress. There is one dispensary (marijuana pharmacy) in the state. I haven’t bothered to obtain a prescription, even though I can say that it does have positive effects on not only my multiple sclerosis, but also my depression and brain function. Yes, my memory actually gets a little better, but that’s anecdotal and unsupervised.

I am not certain that legalization of marijuana would be a good thing. We have enough chemicals to abuse, and while stoned drivers tend to be safer than drunk drivers, I prefer sober drivers. I’ve never heard of anyone getting high and getting violent, but I’ve known people to become lethargic and waste away a weekend. What we need more than anything in this country is a “responsibility” license, maybe a badge, that says “this person can handle the responsibilities of intoxication”. No badge, no beer, or pot, or caffeine.

Because it’s not the drug, it’s the user.

Depression

I’ve heard it said that all great writers are depressed. Watch out Hemingway, here I come.

I have always been a “look on the bright side” kind of person, but my ability to see all sides of an issue always had me aware of the dark side as well. I just ignored it. I told myself that was part of the life drive, to remain positive at all times.

I know my brain isn’t always honest with me. I don’t carry many unhappy memories. I can remember things that were bad, they just don’t inhabit my daily experience. If I don’t think about them, on some level they did not happen. At least the pain they caused did not happen. For instance, there was a period of my life that I remember rather vividly. It was filled with exciting events and good friends. If I really focus on it, I can remember the hell I was living in and how very close to death I came a number of times, how those good memories comprised a very small percentage of the actual tour. As long as I don’t focus on it, it was a really good time, but if those memories were in my mind all the time I would not be much fun to be around. Maybe I’m not, and everyone is just patronizing me.

When I was diagnosed with Multiple Sclerosis my neurologist mentioned that depression could be a symptom, and that fifty percent of people with MS get divorced. It occurred to me that fifty percent of people who get married get divorced, so I didn’t let it bother me.

When my second wife and I were later considering divorce, I went to a psychiatrist. My wife had told me I was crazy and I was looking for a second opinion. The psychiatrist asked me about my childhood and such, and then told me that I was very depressed, because I had had such a traumatic childhood. Really? I just couldn’t believe it. I had never thought of my childhood as anything other than good. My parents rarely beat me, we did happy family things, we were moderately well off financially, what was traumatic? He said it was because my family had moved so often and my parents divorced when I was thirteen. Lots of kids move about, hadn’t he ever come in contact with an upwardly mobile family? Or a military family? This was in 1994, wasn’t divorce rather common by then? It just didn’t make sense, but I’m not a doctor so I took his word for it.

My mother told me that depression ran on her side of the family. My grandmother had been bedridden for the last ten years of her life, and my grandfather took care of her twenty four hours a day. They never appeared outwardly to be depressed, but yes, I could see being depressed under those circumstances. She said she was “clinically depressed”, which I later discovered was a way of saying a doctor had confirmed that she was depressed. Well, so was I then.

A few years later I had a really bad incident, and started taking an anti-depressant, and it worked rather nicely. The only problem was that it interfered with my ability to enjoy alcohol, and working at a winery I needed to be able to drink on a regular basis, so I left the winery. That was more depressing. No win there.

I’ve gone back to the anti-depressants, having learned how to adjust the dosage when needed, and my daily depression has largely subsided. I still have days when I just cry for no apparent reason, and depressing events can get to me more than they “should”, and I tend to be much more emotional than I used to be, but I can tell that the pills do have a positive effect. My current psychiatrist is either a really good actor or he believes I’m handling the ups and downs rather well. He doesn’t tell me I’m depressed, he asks if I feel depressed. I usually don’t. On the other hand, I know that if I allow myself to laugh out loud at disasters he’ll want to give me something a little stronger. So maybe I’m the good actor.

All in all, I know I’ve weathered storms that have sunk others, I know I can make it to tomorrow. I also know that I have depression. I just try not to suffer from it.

Differently abled

Once in a while I get a reminder that I have a chronic disease. See if you can spot it in the picture below, it’s the only way most people can notice. I try not to think about it often, as I have found over the last few decades that thinking about it makes it worse. It’s not funny in the traditional sense, but I’ve also found that a sense of humour makes me feel better. Maybe because it started (from a treatment perspective) with an hilarious exchange, maybe because laughter is the only drug that has worked, I’ve exercised my sense of dark humour.

Image

About the time I turned thirty, I had a vision issue. It was as if I was wearing glasses, and there was a thumbprint on the left lens. After a few weeks I decided to see an ophthalmologist, having Wills Eye Hospital nearby I chose to “see” a doctor there.

I passed the eye exam. I really don’t trust eye exams because you already have a pretty good idea of what is there and can guess the right answers. I’ve learned how to fail those in the intervening years. The doctor told me everything was fine, so I once again described the problem. He shined his light in my eye and looked a bit and said, “I don’t see anything, you’re just getting older”. This was not what a perpetually young person who had just turned thirty wanted to hear, but it cleared up in another week or so and I thought nothing more of it.

Maybe six months later I started to get severe (unable to move due to pain) headaches when my blood pressure peaked (usually during “adult” activities). This time I went to my regular physician, who was much more thorough. We discovered some other “symptoms”, things I had just passed off as unimportant. Occasional weakness and balance issues. He ran a couple of batteries of blood work, ruling out Arthritis and Lyme disease and all sorts of things I had never considered. Then he sent me to a Neurologist. The Neurologist ran a number of tests, which were all in all entertaining. There was this one where I had electrodes placed all over my head and stared at a video screen with a checkerboard pattern on it. Then I had my first MRI, which introduced me to an area of imaging technology I hadn’t seen before.

After a couple of days I received a call from my Doctor. I had no idea what was wrong with me or what they were looking for at this point. He asked me to come into his office, and clear my calendar for the next day. I’m assuming brain tumor at this point. When I arrived in his office, he took me into his study rather than the examination room. He looked very serious. He closed the door and sat down at his desk. He looked in my eyes and said “Most importantly, you should continue to work as long as you feel able”. I replied, rather loudly, “What’s wrong with me?“. He said “Well, the neurologist can go over the details with you tomorrow, but your diagnosis is Multiple Sclerosis (MS).” Thank you doctor drama queen. That story just gets funnier every time I think about it, more so now than back then.

The Neurologist was a nice older specialist, fairly well respected in his field, and he had a much better “bedside manner”. He explained how the disease works, at least what they knew about it. He told me that “Nobody dies from Multiple Sclerosis, they die from complications, or other diseases, or being hit by a bus.” By odd coincidence, someone I knew was diagnosed about the same time across the country. His wife was actually hit by a bus while he was ill. The neurologist told me that there was no treatment, but that research on a new drug was promising and it might be released in another year. The disease was progressing slowly, I had the relapsing remitting form, and the trouble I had with my eye had been Optic Neuritis, my first exacerbation of MS. I signed up for a recently diagnosed support group.

The group was interesting. The MRI as a diagnostic tool for MS was a very new thing, there were people who had spent a dozen years trying to get a diagnosis. MS comes and goes (relapse/remit) so it can be very difficult to diagnose, the MRI was the first tool to be able to see the scleroses (scars) in the brain. Prior to that, the only definitive diagnosis was by autopsy. I began to see how fortunate I was. One girl in our group had the chronic progressive form, she had just fallen down while hiking in Costa Rica a few months before. In the six weeks the group met she went from crutches, to a wheelchair. Then she didn’t show up, and we were informed that she had died. So much for nobody dying from MS.

My step mother, an opticians assistant, took one look from about three feet away and said “oh yeah, you had optical neuritis, I can see the scars”. I looked in the mirror and there they were. So much for Wills Eye Hospital.

Through the years my symptoms have come and gone a couple of times. My eyesight has gotten progressively worse but I’m allowing some of that to actually being older. My balance gets so bad I use a cane at times, once for two years, but I haven’t used it much at all recently. Stress makes my symptoms worse, it seems to drain my reserves and make it harder to conceal my weaknesses. A number of drugs have come out, I tried them all, none had any positive effect. There was one fairly bad relapse about four years ago and my neurologist prescribed steroids by infusion, that was the closest I’ve ever been to death. The steroids wiped out my immune system, I was pale and barely alive. Afterwards I came down with shingles, and the neurologist’s receptionist said “he doesn’t care for shingles” meaning he didn’t treat them. I told her I didn’t care for them either (meaning I didn’t like them) and that he would see me and write a prescription for a pain killer since the steroids had precipitated the Shingles. He saw me, but that was the last time I visited a neurologist.

Once in a while something will happen and I’ll explain that I have MS, like at my high school reunion. I had brought my cane (it’s really cool, black carbon fibre with flames, like Dr. House’s) because I get wobbly pretty fast when I drink, and the cane helps when I explain that I’m not drunk, I just have MS. Most people are visibly shocked, so I have to go through pretty much the entire explanation.

Of course I carry the cane when I travel, it won’t fit in a suitcase and I never know when I might need it. I’ve also found that the presence of a cane implies you are disabled, so I get preferential seating on aircraft.

I am fortunate. Not everyone has the same experience. I prefer to believe that it all comes down to having a sense of humour.