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5 AM, gray pre-dawn.

November 21, 2011

Aren’t suicides supposed to be most frequent in these early hours, just before the dawn? The body’s natural rhythms are all at their lowest, and thus mental depression is at its strongest. There is the loneliness of listening to a sleeping house, with no human company to cheer one, or even to recognize one’s existence. There is the weary prospect of another day, whose foreboding bleakness is metaphorized by the cheerlessness of the sky.

I awoke up for my pills at 5 AM. I was glad that my body had been kind to me, nudging me from sleep just as the buzzing got pronounced, rather than with the screaming thunderbolts. The sky was that dull, stolid gray you only get from cans of Rust-Oleum primer, or an overcast winter’s sky. In a late-November day, there is always the chance that the cloud cover of the early dawn may be burnt off as the day warms up, so, yes, there is hope. But there isn’t the optimism of the “rosy-fingered dawn” that has often lifted my spirits so many morning pill-times during the spring, the summer, the early fall.

So the dawn was not only gray, but dismaying! I’d forgotten my day’s “box of pills” downstairs. It’s actually a set of boxes, 4 containers in each strip, one for each day of the week. It Looks a bit like this one:

Jack had brought it back from a 1999 trip to Oklahoma after that state’s  tornado disaster had necessitated the deployment of the PruPac Mobile Claims Bus. (He was the Project Leader on the bus’s creation and connectivity.) These cheery objects had been given away as a sort of party favor by one of the medical firms they were co-ordinating with there in Norman. We didn’t *need* it, but Jack is a packrat, like all of his mother’s side of the family, and collects anything that might come in handy some day.  At the time he brought it home, I was a bit annoyed. We didn’t need it, and it gave me the shivers, since it seemed geriatric. However, after I was released from the hospital after my stroke. I dug it up. it became a necessity,  keeping track of the 8 or 9 prescriptions I had to take at varying times of the day. (Now it’s 11.) I fill it once a week, and it takes at least 30 minutes.

usually, I bring each day’s set up to be with me, so as to have the dawn set at the bedside. Last night,since I’d forgotten it, I had to go downstairs to get the right one. I was grateful that I had awoken early enough to climb the stairs both ways without painful stumbling. But the activity roused me, and it was difficult to fall back to sleep afterwards  I lay in bed,yawning, and listened to the usually-reliable soporific of a narrated Wodehouse book on my iPod. To no avail! “Money for Nothing“, while amusing, kept losing my attention. The idea of suicide kept returning to my consciousness.

No, not my own, although I did recall my past brushes and considerations, a sorry set both pathetic and misbegotten. I was thinking of suicides due to CPS. I’ve mentioned Frank’s suicide a few times here. Frank was a long-timer on the CPS Alliance Yahoo group, to which I have belonged from the month following my stroke and diagnosis, and of which I am one of the moderators. About two weeks ago, we learned about his suicide  – which had actually occurred in 2010. Mary, the list’s creator and long-time guiding light, passed along an email she had received from Frank’s widow, I reproduce it here:

I had e-mailed you a year-and-a-half ago but apparently you did not get my message.  Frank, unfortunately, could not stand the pain any more and took his own life on May 28, 2010, a day after his 72nd birthday.  He had prepared us all and left lovely letters for each of us.  The letters were not in the least bit morose but just chock full of wonderful memories that he wanted to convey.  Our kids and I are okay with his decision but we miss him terribly.  His life after his stroke was truly difficult but we both felt that in many ways our marriage actually grew in depth during that time.  We had wonderful times together as he loved to have me read to him and I enjoyed it as well.  Before he died, we would hand out information sheets about CPS to anyone we met in restaurants, doctor’s offices, etc.  We did the same at his memorial service so the many, many who attended were educated.  Our family wanted our pastor to discuss the subject of suicide straight on and to help educate others about CPS.  He did a wonderful job and it was a beautiful, uplifting service.  Some of my Catholic and Jewish friends actually said they would like to join our Protestant church as it was one of the nicest services they had ever attended.
 I now spend much of my time volunteering for the Rocky Mountain Stroke Center in Littleton.  Frank had physical therapy there along with a men’s talk therapy group and I helped start a caregiver group which was a huge help to me during those 3 1/2 years that I cared for him.  I also teach a gardening class for stroke survivors there and just wrote a $10,000 grant to help us provide better handicap accessible gardening beds.  I think we will get it!  The most important thing I do, however, is to give talks all over the place for churches, service clubs like Rotary and Kiwanis, and businesses about stroke prevention and signs of stroke.  I give these talks along with a stroke survivor who speaks very well.  He and I are a good team and are reaching lots of people.  When there is adequate time, I try to mention CPS, also.  I am beginning to branch out a little and am starting to talk about caregiving along with a couple of other caregivers.  Frank would be pleased with what I am doing.
 I still read the CPS Alliance postings every day and continue to learn.  It is a shame that we were not able to find any relief for Frank.  We tried so many medications but all seemed to have side effects that were too difficult for him.   The other strategies we tried like acupuncture, relaxation therapy, etc. were just not effective.  It was interesting that when he had shingles a few months before he died, he was in far less pain.  The real pain of shingles was a fraction of the phantom pain of CPS.  I talked with his doctors about this and apparently there is a “gate theory” that explains that and I guess they are trying some forms of induced pain to short-circuit the CPS pain.  Someday . . .  One of his doctors was encouraging him to try marijuana and I had encouraged him to do so for a long time but he was old-fashioned and just felt it was dope.  He had, however, agreed to try it and had an appointment scheduled with a doctor the week after his death to get approval to try it.  I guess he really did not want to go through with it.
 I surely do appreciate all the time you devote to keeping the CPS Alliance going.  It was a huge help to me when I was caring for Frank.  I would cut and paste portions of postings that were pertinent to Frank and would show them to his doctors to help them understand.  I will say that his Kaiser doctors were fabulous and were willing to try anything that I suggested.  Your website continues to help me as it reaffirms the agony he endured and helps me learn about new findings.  I admire all of you who continue to learn from each other and support each other and I love the chance to keep learning myself and then to educate others.
Frank’s suicide appears to have been a long and carefully considered decision. We can say, “Look at all he still had – the love of a large family, the devotion and deep maritoriusness of his wife, a long history of interests and pastimes and hobbies, his limbs and mobility, even the hope proposed by other untested treatments. Why would he commit suicide?”
For Frank, there was no treatment that could blunt the edge of the knives, the countless knives which buzz and freeze and burn without cauterizing or numbing or stopping. He took the path common to so many CPS patients in the past. At least it feels like a choice, when all other choices have been stripped away. The amazing, and appalling, thing is that there is no way to know how many people have killed themselves as a result of CPS pain.  How many thousands and thousands have committed suicide as a result of this blighting of life?Certainly, there is no way to begin to compile statistics, because “Central Pain Syndrome” as a diagnosis only really began with a few cases in the 1990s. It still is a diagnosis that is rarely made – even though the numbers show that it is anything but rare.
Use me as an example of the changes in diagnosis. When I first had my stroke, back in 2007, I wasn’t diagnosed with “Central Pain Syndrome.” I originally left the hospital with the potential diagnosis of “Dejerine-Roussy Syndrome,” and a referral to a neurologist on the hospital staff who had familiarity with it. So, being the old academic that I am, I went home and immediately googled it: there wasn’t much available. The disease was first described by Joseph Jules Dejerine and Gustave Rossy, two of the earliest neurologists, who were working in France at the beginning of the 20th Century. In 1906, they wrote a paper which described a syndrome that resulted from a lesion in the thalamus, the brain’s pain-relaying center. The disease, which they called “Dejerine-Roussy Syndrome.”  was characterized by:
“1. A slight hemiplegia, usually without contracture and rapidly regressive.
2. A persistent superficial hemianaesthesia of an organiccharacter, which can in some cases be replaced by cutaneous hyperaesthesia but is always accompanied by markedand persistent disturbances of deep sensation.
3. Mild hemiataxia and more or less complete astereognosis.
4. Severe, persistent, paroxysmal and often intolerable pains on the hemiplegic side, not yielding to any analgesic treatment.
5. Choreoathetoid movements in the limbs on the paralyzed side.”
That gave me a day’s worth of work to decipher, but I’d read Lacan, Derrida, and Irigaray in graduate school. So I knew that, any statements, however hermeneutically written, can be rendered into everyday language. Here is the translation of the medical terms:
1. Hemiplegia: a paralysis and weakness;
2: Hemianaestheia: Loss of sensation, specifically the inability to feel touches (tactile sensations) on one side of the body (This is what makes chopping vegetables dangerous.)
3. Hemiataxia and more or less complete astereognosis: a loss of muscle control affecting one side of the body, and the inability to identify an object by touch without visual input. (I must see what I am handling to be able to associate any sensations I’m feeling to the object itself. This is especially crucial on stairs.)
4.) Severe, persistent, paroxysmal and often intolerable pains on the hemiplegic side, not yielding to any analgesic treatment. This is the life-changing affect. Why it’s listed fourth I don’t understand, since it’s really Number One. This is the item that makes people kill themselves.
5.) Choreoathetoid movements in the limbs on the paralyzed side.” These are the involuntary purposeless and uncontrollable movements characteristic of chorea and athetosisthe sort of shaking you see in Parkinson’s and Huntington’s Chorea. (It’s why I can’t thread a needle or give myself a manicure.)
This description pretty much covers my particular condition. But wait! When I saw the neurologist the following month, she told me that “Dejerine-Roussy Syndrome” was the “old-fashioned term.” Now the neurologists in the know were calling what I had “Post Thalamic Stroke Syndrome.” Dr. Dash actually understood the disorder, because she had trained in India, where the research on this disease was apparently far more advanced. When I got home to google that term, I found a host of names that had all been given to the same disease, the syndrome which was caused by an injury to the thalamus.
  • Dejerine-Roussy Syndrome
  • Posterior Thalamic Syndrome
  • Retrolenticular Syndrome
  • Thalamic Hyperesthetic Anesthesia
  • Thalamic Pain Syndrome
  • Central Pain Syndrome
  • Central Post-Stroke Syndrome

It wasn’t until later in the year that I realized that Dejerine-Roussy, or Thalamic Stroke Syndrome, or anything that you want to call it, was simply a subset of a much broader category: Central Pain Syndrome. CPS can have many causes, and the patients may get different diagnoses, but they all share the same type of pain. The very fact that this disease has so many causes, and thus so many diagnoses, means that there is very little research done to alleviate the common scourge. There are huge numbers of us suffering from it, but no strength in those numbers, because we never realize our commonality.

What’s the worst part is that the medical profession never realizes it, either.  Usually the sufferers usually do not get diagnosed before a miserable trek through a medical profession that seems ignorant, arrogant, and almost sadistic. Their common feature: they do not provide any comfort, but only more pain. The result is despair. That despair results in untold self-murders.

When I first began researching “Dejerine-Roussy Syndrome,” I read journal articles, case studies, and abstracts – anything, looking for clues. They all contained some variation of this sentence:

The prognosis is poor, with no resolution and reports of suicide in severe cases.

How about this? Prognosis of Thalamic Syndrome (Dejerine Roussy): Some cases may resolve but in other cases the condition is permanent. Cases involving severe pain may result in suicide.

There are actually statistics about CPS and suicide in this 1995 article in Neurology that I don’t have access to:
The severity of the pain and the lack of effective treatments is demonstrated by the high incidence of suicide among CPS sufferers (Gonzales, 1995).
Dejerine himself, in the original 1906 paper, said that his patients frequently committed suicide as a result of the Syndrome because “...the suffering is sometimes intolerable.” Let me tell you, reading article after article that discusses suicide as the frequent conclusion is also intolerable. You know what else is intolerable? That Central Pain Syndrome is described as a disease that is not fatal.
I can feel great sympathy for Dejerine. He truly wanted to help his suffering patients; he worked on understanding the nature and functions of the thalamus until his death in 1917. The intractable, mysterious and excruciating nature of the disease must have made pursuing cures, or even palliatives, seem hopeless, and almost as depressing as the patients’ experience itself. The disease itself is complicated, has no straightforward causes, development, or treatments. Even the symptoms themselves are like an amorphous nebulae of losses, weaknesses, and afflictions. CPS resulting from MS develops so differently from the CPS of Thalamic Stroke Syndrome – and has different causes: an auto-immune attack on the nerves in the former, a lacunar infarction in the latter. These two forms of CPS, for instance, end up “stovepiped” in different specialties, even though they are both neurological in nature. Finally, busy specialists tend to concentrate on curing the things that they do have leads on. CPS is a disheartening, amorphous, and unrewarding research field, and an impossible disease to actually defeat clinically.
It’s much easier for overstretched physicians to refuse such patients, to drive them out of the office with rudeness, to tell them flat out that they can’t be helped and they should go elsewhere, to refer them to a pain clinic or a psychiatrist, or to just narcotize them with opiates to get them to leave you alone. But from the patient’s point of view, there is little sympathy for the doctor who is breaking his or her Hippocratic oath to “first, do no harm.” To be ignored, belittled, doubted, savaged or doped up, rather than supported and assisted – most of all, heard and believed – is doing the CPS patient a positive injury. Our emotions and stressors actually inflame the pain. Just as the stress of travelling for more than 3 hours can cause a flare-up that take a day’s worth of rest to quiet, The shock and the dashed hopes of a “bad” interaction with a doctor creates a deep forlorn despondency that physically burns.
Sometimes I get so despondent and exhausted that I feel that my death would be better for my family. It’s usually on those days of elevated high blood pressure attacks, when it seems that an early death is likely anyway. But I no longer consider actively committing suicide; acquiring CPS seems to have burned out that particular circuit. For one thing, I am very conscious of the fact almost all ways that you would try to kill yourself hurt. I hurt enough already, and certainly don’t want to die in even more pain. Then there is always the chance that you will survive (as I know) and that things will be worse than ever, especially physically. (The stories you run into about botched suicide attempts never have positive endings.)
But mainly I no longer consider suicide because the sensation of life has become too precious to me. As the fact of my own mortality has become more vivid and real, I cling to the beauties of life even more dearly. the simple facts of my senses, taking in the details of this realm, such as the silver light in the sky as dusk descends, Venus appearing along the horizon, the quiet ticking of the wall clock and the soft splashing of the fountain, the fragrance of the lavender we grew this year. My physical surroundings reveal their lapidary pleasures. This is Thanksgiving week: ahead of me are succulent meals with dearly beloved people, discussions and laughter and hugs. Yes, half of my body is burning, cold, difficult to work with, and can cause me great misery. But half of my body remains whole, and can feel silks and stones and water flowing, can hold a cup of coffee or a glass of wine steadily, and is strong enough to support me when the weak side fails. My five sense are still intact (even if the sixth sense, proprioception, is a bit wobbly.) Thanksgiving is the time when we are grateful for the bounty we have both been given and earned – and I have a bounty of things to be for which to grateful.
Besides, gratitude is proven to have a health-improving kindling effect in the brain, just as much as pain does. After all, the brain reforms itself neurologically depending on what you are thinking of – as Norman Doidge’s book, The Brain That Changes Itself demonstrates. Here are my two hands in front of me: one hand cannot feel a button, or Braille. The other one can softly stroke a face or a kitten, and feel the surface. One hand shakes; the other is steady. For me, the phrase “on the other hand” is literal, embodied. Irigaray, in This Sex Which Is Not One, had to create a new language to explain “difference feminism.” What language is there to explain “difference bodyism”? I am grateful for the opportunity to work to create that language – or for the ability to see CPS “on the other hand.”
I am grateful for the blessing that thoughts of suicide at 5 AM are focused on how to stop the necessity for others, rather than to act out that necessity for myself.
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2 Comments leave one →
  1. i0landa permalink
    November 22, 2011 6:19 AM

    Louise – re your tablet box ………

    Why not get another tablet box – like this one on the link below – and keep it by your bedside all the time rather than have to remember to take it up each night when you go to bed? Know what I mean?

    I do this with the only med that I take in the morning – my thyroxin. I keep a Monday-Sunday tablet box of thyroxin always by my bed, and I have another tablet box for the rest of the day.

    Know what I mean?

    i0landa

  2. November 23, 2011 11:32 PM

    Iolanda, thanks for your suggestion. My problem has been that when I tried that, I would forget to take it back downstairs and re-fill it! I’ve tried to train myself to remember at least the *one thing.* Sometimes, I fail.

    I was fortunate to be pain-free enough to walk down the stairs, and then back up again. I’ve found it’s easier yo have two places to sleep – one on each floor. This was a day I could finish dreaming next to my sweetie.

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