Dealing first with the title of this: Today an obvious riff on a quote from the current United States President, a transparent play for attention and readership, may not not be so obvious in the future. Even without that context, it is, I believe a relatively apt statement, as any reader of many of my prior word blobs would know, if such a creature were to exist. Whether to reiterate or initiate, I nonetheless explain that I believe I was born with the brain of a genius, somehow trapped within the brain of an idiot. More accurately, imagine a potentially genius brain afflicted with virtually every known, and probably some yet to be codified, learning disability. That is the fundamental dilemma of my existence. A gnawing hunger not just for knowledge, but for functionality, for coherent creativity, constantly tripping over myself, too thrashed by constant context switching to concentrate towards any achievement. Able to grasp logic, but unable to perform calculations. Able to hear the music but unable to write it down or play it. A thousand more ways of saying "almost, but not quite", which is the same as nothing.
Several weeks now into TMS (Trans-Cranial Magnetic Stimulation) therapy, I have had mixed indications.
The most positive was when, about two weeks ago, I went out and did my favorite thing with some of my favorite people, a live karaoke band thing called Karaoke From Hell. I had a not terrible time. I sang two songs, carefully chosen as easy for me, and it was not terrible. Nearly a year earlier, I had attempted this same thing and it was very terrible.
Unfortunately, a few days ago I had every intention of repeating this experiment, with the added motivation that it was a celebration of a milestone birthday for one of the band members, and one of the few people with whom I have enough in-person history to dare to count as a friend in a more-than-Facebook sort of way. I didn't make it. I felt both physically and mentally exhausted and generally terrible. Even worse, I construed tidbits of information about the event as indications that I was not as welcome as I might have thought.
About once a week, they (the TMS people) have me fill out a simple form that is intended to measure how depressed I am. I remember just a few days before my above-mentioned disappointment, filling out this form and being surprised at the general positive impression my responses were creating. It seemed strange, even as I was doing it, but I also thought, at the time, that my answers were accurate. Within hours I felt entirely differently.
Today (technically, yesterday) was by far the most unusual and perilous experience I have had during TMS treatment. This is going to be difficult to contextualize properly since I have not been writing reports of my TMS treatment experiences to date. Essential facts are that I remain stationary for a little over 20 minutes with a helmet strapped to my head with a chin strap, receiving ~2 second bursts of 36 high-energy electromagnetic pulses every ~20 seconds. It sounds like a machine gun, feels like a woodpecker on my head, and causes involuntary facial spasms. This is with earplugs and without my glasses so interaction with the technician or perception of any distracting media is limited. All things considered, it is significantly less traumatic than this description might seem to indicate.
Back to today, shortly after my session began, someone opened the door to the room just a little and had a brief and seemingly furtive conversation with my technician, which I of course could not hear. I guess I should also as background mention that I have a history of anxiety symptoms which I describe not as "panic attacks" but as "spontaneous visualizations", where I suddenly and vividly see a worst-case outcome of the immediate circumstances play out in my mind, usually in traffic, usually on bridges, usually involving earthquakes. Something similar happened at this moment, but not a visual manifestation. Something new that is hard to categorize. I suddenly was vividly focused on the possibility that the conversation was about something terrible that happened to my wife, and that they decided not to tell me until after the session. Thus I spent the whole session imagining that my wife had been killed in some accident or random act of violence and all that would follow from that. It was like a waking nightmare. In that 20 minutes I mentally lived through days of grief and confusion in detail, including a scene where I interrupted a speaker at her funeral with my own extemporaneous rant about how none of them really knew her. I could go on for many hundreds of words describing this experience, as it was that detailed and intense. Fortunately, miraculously, in the real world she called me moments after they had removed the equipment from my head. I have no idea why this happened, other than the fact that untimely death and funerals were kind of the theme of the week, since my wife's former Dragon Boat coach, younger than us, had recently died of a stroke and she had gone to his funeral a couple of days ago.
Remember the "Fire in my Veins" post? If not, that title alone should suffice. My physical pain situation is different now, as it is less full-body and more centered on my legs, both muscles and joints, and at it's worst, focused more on my left leg and the left hip. Yet there are occasionally brief periods when I notice that I am not in a terrible amount of pain, but those are extremely rare, and again, almost completely unpredictable, other than tending to be more towards the end of my waking hours, and never at the beginning. To some extent pervasive pain has given way to pervasive weakness and tiredness. A dullness and sluggishness of both body and mind. A feeling each day upon waking that there is no fundamental advantage to being awake over being asleep. Getting out of bed only when physical pain has awakened sufficiently to prevent a return to sleep.
I tire of writing these reports as I am sure anyone who might read them would have long since grown weary of them. What is the point?
The point had been to document my experiences with my various malfunctions and my various treatments in some forlorn hope of gaining some insight or perspective or some damned thing that could be useful at some point going forward to optimize treatment and behavior towards preferred outcomes.
I am increasingly unconvinced that this very unscientific experiment is building towards anything of practical utility, except maybe one little epiphany.
What if I stop trying to fix what cannot be fixed? What if I learn to have as peaceful a relationship with the reality of my existence as possible? I was born with a profoundly flawed brain, and many of my life experiences have only served to make it worse. Why should I believe that there is some kind of a "fix" or "solution" to being what I am? It may happen, for someone in similar condition, someday, but that day is definitely not today. We cannot use our brains to fix our brains. Maybe someday, an advanced and unaccountably benevolent Artificial Intelligence will be able to understand the human brain well enough to undo everything that is wrong with someone like me. But now is now, and maybe my best path is that of acceptance, rather than resistance.
Without hope, there can be no disappointment.
One more point. I come to acceptance reluctantly as someone who has already abandoned about as much ego as is humanly possible. I no longer care that "fixing" me means killing me and bringing into being someone who might not even like me as I am. I already don't like me as I am. I welcome the idea of reading my own words and being unable to relate to such a miserable maladjusted malcontent as the person that I am right now. I would love to be the person who says "I'm sure glad I don't even remember being that person." I attach no pride to my humble state. I want to get to the middle of "Flowers for Algernon" and stay there. Even when I read the crap I wrote as a teenager, I recognize myself with shame. I may have gained some marginal skill with syntax, but the heart of what I was saying then is still the heart of what I am saying now. A sick and stupid heart, the same lonely and frightened and superstitious little boy that I have always been.
Thursday, June 20, 2019
Saturday, May 11, 2019
More Complaints: Too many variables: Fire in my veins
Pervasive musculoskeletal pain has been constant for so long that it only relatively recently occurred to me to start mentioning it to medical personnel when they question me about my symptomology.
And now, for at least months if not a year or more, it has become worse.. and different. While more of an allegorical than literal attempt to convey the feeling, it is like a significant portion of my blood consists of some sort of corrosive material, like battery acid. Obviously, I don't know what actual sensations would be caused by such a condition, but it rings true enough to me. It is similar to what I have often imagined how chemotherapy might feel.
Obviously, when everything hurts all the time, and it even hurts more when I move, and the slightest effort causes shortness of breath, getting particularly excited about anything, or enjoying much of anything under any conditions, becomes difficult.
But then there are brief periods, infrequently, when I feel relatively not horrible for awhile, and I have no idea why. I try to pay attention to everything I do, all the medications, foods, activities, sleep patterns, to try to figure out the magic formula for temporarily feeling not horrible, and if not controlling it, at least being able to predict it.
There are too many variables.
Not part of this equation are the rare occasions when I intentionally drink an excess of alcohol. That, predictably, brings a temporary condition of "feeling no pain", and sometimes even being of other than morose or aggravated mood. Almost always, but oddly only almost, this is predictably followed by a period of feeling even worse than my baseline of terrible, so it is not a sustainable strategy. There are other non-preferred side-effects that come with even the up-side of the alcohol-in-excess experience. It is frustrating to be of poorer-than-usual physical coordination or clarity of thought.
I have eliminated alcohol completely from the equation for periods of time significant enough to eliminate it as a primary cause of my constant pain and malaise.
New, too, is a spectacular increase in anxiety, especially as it relates to sleep, and pardon the indelicacy of the subject, it also has significantly interfered with digestive functions.
There is simply too much going on, and getting worse, and too many medications in play, for me to analyze this situation. It seems to me that there is no single medical professional cognizant at any given time, for any period of time, with any depth of interest or contemplation, of the broader picture of my constellation of ills and pills. There could be some simple interaction of what is, or just one thing to add or subtract from the recipe, that might make the resultant metabolic stew less intolerably bitter.
I grow desperate, willing to consider approaches that I would normally consider pseudo-medicine.
Looking at my age in this condition, I have little expectation of significant improvement in my general vitality. I would settle for a noticeable reduction in constant agony. I see more potential for further ill than for any relief, and yet I remain non-suicidal. It makes me wonder just how unimaginably horrible life must be for those who are drawn to suicide.
I had a full plate of purely psychic horrors to plague me before all of this actual physical pain forced it's way to the fore-front. I almost miss the luxury of making myself miserable with just my disordered mind.
It remains possible that some portion of my perceived physical ills are directly caused by my many mental malfunctions. Perception, after all, happens in the mind, including that of pain, and the mind can certainly interfere with many bodily functions.
I finally get my first TMS treatment next Monday, to be followed by an attempt to maintain a schedule of daily treatments for several weeks. I am willing, but not hopeful.
And now, for at least months if not a year or more, it has become worse.. and different. While more of an allegorical than literal attempt to convey the feeling, it is like a significant portion of my blood consists of some sort of corrosive material, like battery acid. Obviously, I don't know what actual sensations would be caused by such a condition, but it rings true enough to me. It is similar to what I have often imagined how chemotherapy might feel.
Obviously, when everything hurts all the time, and it even hurts more when I move, and the slightest effort causes shortness of breath, getting particularly excited about anything, or enjoying much of anything under any conditions, becomes difficult.
But then there are brief periods, infrequently, when I feel relatively not horrible for awhile, and I have no idea why. I try to pay attention to everything I do, all the medications, foods, activities, sleep patterns, to try to figure out the magic formula for temporarily feeling not horrible, and if not controlling it, at least being able to predict it.
There are too many variables.
Not part of this equation are the rare occasions when I intentionally drink an excess of alcohol. That, predictably, brings a temporary condition of "feeling no pain", and sometimes even being of other than morose or aggravated mood. Almost always, but oddly only almost, this is predictably followed by a period of feeling even worse than my baseline of terrible, so it is not a sustainable strategy. There are other non-preferred side-effects that come with even the up-side of the alcohol-in-excess experience. It is frustrating to be of poorer-than-usual physical coordination or clarity of thought.
I have eliminated alcohol completely from the equation for periods of time significant enough to eliminate it as a primary cause of my constant pain and malaise.
New, too, is a spectacular increase in anxiety, especially as it relates to sleep, and pardon the indelicacy of the subject, it also has significantly interfered with digestive functions.
There is simply too much going on, and getting worse, and too many medications in play, for me to analyze this situation. It seems to me that there is no single medical professional cognizant at any given time, for any period of time, with any depth of interest or contemplation, of the broader picture of my constellation of ills and pills. There could be some simple interaction of what is, or just one thing to add or subtract from the recipe, that might make the resultant metabolic stew less intolerably bitter.
I grow desperate, willing to consider approaches that I would normally consider pseudo-medicine.
Looking at my age in this condition, I have little expectation of significant improvement in my general vitality. I would settle for a noticeable reduction in constant agony. I see more potential for further ill than for any relief, and yet I remain non-suicidal. It makes me wonder just how unimaginably horrible life must be for those who are drawn to suicide.
I had a full plate of purely psychic horrors to plague me before all of this actual physical pain forced it's way to the fore-front. I almost miss the luxury of making myself miserable with just my disordered mind.
It remains possible that some portion of my perceived physical ills are directly caused by my many mental malfunctions. Perception, after all, happens in the mind, including that of pain, and the mind can certainly interfere with many bodily functions.
I finally get my first TMS treatment next Monday, to be followed by an attempt to maintain a schedule of daily treatments for several weeks. I am willing, but not hopeful.
Friday, March 22, 2019
More about TMS
This is a direct update to the immediately previous post.
Apparently there are two competing hardware systems, but little means to evaluate which is better. We found a provider who uses a less common system which I had not seen in my previous research. It does use stronger magnetic fields, in case that might be a good thing.
Earlier this week I had my second of two "evaluations" with the provider. This one was with the actual MD who owns the practice. It was two hours of intense questioning, more thorough than most psychologists or psychiatrists I have seen. It all felt pretty casual at the time, but afterwards I was exhausted. I still have paperwork to do, and they still have to get my history from other providers and work things out with insurance, but it looks like I will be doing this thing.
Daily treatments five days a week for several weeks. Just showing up to the same place at the same time day after day is going to be difficult for me. That's kind of why I don't have a job.
I am far less concerned about the treatment experience itself, and certainly less concerned than they expect me to be. In both evaluations, I had to interrupt long disclosures of risk and accompanying assurances of safety to assure the provider that I had done my homework already.
That's enough about that for now. Not hopeful of positive results, but glad to get on with it so I can either be surprised, or move on to ECT, Ketamine, or final defeat.
Apparently there are two competing hardware systems, but little means to evaluate which is better. We found a provider who uses a less common system which I had not seen in my previous research. It does use stronger magnetic fields, in case that might be a good thing.
Earlier this week I had my second of two "evaluations" with the provider. This one was with the actual MD who owns the practice. It was two hours of intense questioning, more thorough than most psychologists or psychiatrists I have seen. It all felt pretty casual at the time, but afterwards I was exhausted. I still have paperwork to do, and they still have to get my history from other providers and work things out with insurance, but it looks like I will be doing this thing.
Daily treatments five days a week for several weeks. Just showing up to the same place at the same time day after day is going to be difficult for me. That's kind of why I don't have a job.
I am far less concerned about the treatment experience itself, and certainly less concerned than they expect me to be. In both evaluations, I had to interrupt long disclosures of risk and accompanying assurances of safety to assure the provider that I had done my homework already.
That's enough about that for now. Not hopeful of positive results, but glad to get on with it so I can either be surprised, or move on to ECT, Ketamine, or final defeat.
Tuesday, February 19, 2019
This has less worth
A pseudo-random sequence of events led to me re-reading my most recent posts, so I might as well do an update, I guess. To keep it as brief and non-redundant as possible, this makes no attempt to make sense as a stand-alone post, but rather presumes one has read at least the most recent posts, which are themselves largely redundant.
Upon revisiting my psychiatrist and discussing my ever-narrowing treatment options, I acquired a referral to a provider of TMS (Trans-Cranial Magnetic Stimulation). Due to insurance issues and some very non-satisfactory discussions with the staff, this was a dead end. The next logical step was to identify an alternate provider compatible with my insurance and then get a referral to said provider.
It seemed prudent to combine my search for a provider with some additional online research into TMS. I had expected to wade through an evaluation of a broad spectrum of competing hardware and treatment protocols, comparing each to the most solid science I could find on the subject. I was surprised to discover three things:
1. There is essentially only one hardware system from one manufacturer, and only slight variations in treatment protocols, since all providers are directly trained by the manufacturer. Providers are numerous, but there appears to have been a bubble of growth in this industry which is in the early stages of bursting, with a number of bad links already.
2. There is no solid science to support the efficacy or prudence of TMS. There are many articles discussing the difficulty in designing experiments which would provide more definitive results. Ok, this part wasn't really surprising. The most reputable sources were the most skeptical about TMS, not the least of which, the APA (Americal Psychological Association) itself. The only good news is that, effective or not, it is largely benign with very rare incidence of serious negative effects.
3. Seemingly trustworthy and well-known large medical universities have vaguely positive things to say about TMS and claim to be engaged in TMS research. Suspiciously, all photography of experimental apparatus appears to depict the very same equipment sold to the individual practice providers. My wife spent a lot of time following up in detail with OHSU (Oregon Health and Sciences University) about their TMS research. Their story, as it turns out, appears to be typical of the other universities as well. They had some initial enthusiasm and limited experimentation, ran into the same difficulties in designing experiments and producing solid results that everyone else has had, and are not currently actively engaged in any research on the subject.
So... probably another form of electric snake oil, but just enough of a hope/doubt mix to maybe give it a try, with very low expectations.
It appears that my next step will most likely be just that, give it a try so long as it is covered by insurance, but invest no hope.
This ultimately brings me back to my obsession with threes, in this case, three choices:
1. Go ahead and pursue ECT (Electroconvulsive Therapy). A treatment much maligned in popular culture, but which has a fairly good rate of initial efficacy, although a higher than hoped-for rate of relapse and diminishing returns with subsequent re-treatment (a profile it shares with success stories claimed for TMS).
2. Abandon all physical or pharmacological approaches to treatment, and do my best to live out what remain of my days as tolerably as possible, with or without a return to the endlessly disappointing talk therapy. My concern is not as much with what I can tolerate, but more with what is reasonable to expect others to tolerate in terms of my behavior.
3. Ummm... So far, I only have extremely brief moments of psychic discomfort so intense that I contemplate the final solution. These moments have passed and not led to a very loaded word I am loathe to invoke in this context: planning. In calmer times, I have dispassionately gone through the intellectual exercise of finding the inevitably unacceptable consequences or risks of consequences that come with any methodology I can imagine for implementing a final solution. I understand that a person can reach a point where the final solution is coveted as the last and only thing within individual control, but even that sense of control is false as there are too many variables that can lead to unintended results. This is a strongly discouraging situation before moral philosophy is even considered, which tends to cast even more doubt on the prudence of the final solution.
So much for my obsession with threes. There is a fourth, very unlikely, course of action:
4. Engage in experimentation with legal and non-legal pharmaceutical treatments. I have done some online investigation into this and it is not very promising. The best I can hope for is a temporarily altered state of consciousness which occludes one set of mental dysfunctions with another. The most promising substance, MDMA, is far too difficult to synthesize properly and I would trust no amateur manufacturer. It is a substance that has been, in pharmaceutical-grade form, tested by scientists, with some hopeful results for some extreme conditions, but FDA approval seems very far away, if it ever comes, and even then, there is much that is not known about appropriate dosing or long-term efficacy.
Once again, as always, way too much, and no hopeful conclusion. I expect that I will never tire of complaining until the day I die.
Upon revisiting my psychiatrist and discussing my ever-narrowing treatment options, I acquired a referral to a provider of TMS (Trans-Cranial Magnetic Stimulation). Due to insurance issues and some very non-satisfactory discussions with the staff, this was a dead end. The next logical step was to identify an alternate provider compatible with my insurance and then get a referral to said provider.
It seemed prudent to combine my search for a provider with some additional online research into TMS. I had expected to wade through an evaluation of a broad spectrum of competing hardware and treatment protocols, comparing each to the most solid science I could find on the subject. I was surprised to discover three things:
1. There is essentially only one hardware system from one manufacturer, and only slight variations in treatment protocols, since all providers are directly trained by the manufacturer. Providers are numerous, but there appears to have been a bubble of growth in this industry which is in the early stages of bursting, with a number of bad links already.
2. There is no solid science to support the efficacy or prudence of TMS. There are many articles discussing the difficulty in designing experiments which would provide more definitive results. Ok, this part wasn't really surprising. The most reputable sources were the most skeptical about TMS, not the least of which, the APA (Americal Psychological Association) itself. The only good news is that, effective or not, it is largely benign with very rare incidence of serious negative effects.
3. Seemingly trustworthy and well-known large medical universities have vaguely positive things to say about TMS and claim to be engaged in TMS research. Suspiciously, all photography of experimental apparatus appears to depict the very same equipment sold to the individual practice providers. My wife spent a lot of time following up in detail with OHSU (Oregon Health and Sciences University) about their TMS research. Their story, as it turns out, appears to be typical of the other universities as well. They had some initial enthusiasm and limited experimentation, ran into the same difficulties in designing experiments and producing solid results that everyone else has had, and are not currently actively engaged in any research on the subject.
So... probably another form of electric snake oil, but just enough of a hope/doubt mix to maybe give it a try, with very low expectations.
It appears that my next step will most likely be just that, give it a try so long as it is covered by insurance, but invest no hope.
This ultimately brings me back to my obsession with threes, in this case, three choices:
1. Go ahead and pursue ECT (Electroconvulsive Therapy). A treatment much maligned in popular culture, but which has a fairly good rate of initial efficacy, although a higher than hoped-for rate of relapse and diminishing returns with subsequent re-treatment (a profile it shares with success stories claimed for TMS).
2. Abandon all physical or pharmacological approaches to treatment, and do my best to live out what remain of my days as tolerably as possible, with or without a return to the endlessly disappointing talk therapy. My concern is not as much with what I can tolerate, but more with what is reasonable to expect others to tolerate in terms of my behavior.
3. Ummm... So far, I only have extremely brief moments of psychic discomfort so intense that I contemplate the final solution. These moments have passed and not led to a very loaded word I am loathe to invoke in this context: planning. In calmer times, I have dispassionately gone through the intellectual exercise of finding the inevitably unacceptable consequences or risks of consequences that come with any methodology I can imagine for implementing a final solution. I understand that a person can reach a point where the final solution is coveted as the last and only thing within individual control, but even that sense of control is false as there are too many variables that can lead to unintended results. This is a strongly discouraging situation before moral philosophy is even considered, which tends to cast even more doubt on the prudence of the final solution.
So much for my obsession with threes. There is a fourth, very unlikely, course of action:
4. Engage in experimentation with legal and non-legal pharmaceutical treatments. I have done some online investigation into this and it is not very promising. The best I can hope for is a temporarily altered state of consciousness which occludes one set of mental dysfunctions with another. The most promising substance, MDMA, is far too difficult to synthesize properly and I would trust no amateur manufacturer. It is a substance that has been, in pharmaceutical-grade form, tested by scientists, with some hopeful results for some extreme conditions, but FDA approval seems very far away, if it ever comes, and even then, there is much that is not known about appropriate dosing or long-term efficacy.
Once again, as always, way too much, and no hopeful conclusion. I expect that I will never tire of complaining until the day I die.
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