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“Do the Math”

November 17, 2011

Mary Simpson, the saint who formed the CPS Alliance, sent out a message to those of us in the group today:

“DO THE MATH/There are more than 7 million adult survivors in the U.S./ AT 15%+ HAS CPS


15% of 7 million means that there are 1,050,000 CPS sufferers from stroke alone in the US. That does not count all the other CPS patients who have developed CPS as the result of other causes. For instance. there are approximately 400,000 MS patients in the US – and another 200 diagnosed each week.  it’s estimated that up to 30% of them develop CPS. (That’s another 120,000 people that could join the Alliance.)

It’s estimated that there are approximately half-a-million Parkinson’s patients in the US. (This is the figure from the National Institute of Neurological Diseases and Stroke.) There are an estimated 730,000 children with autism. Cystic Fibrosis – 30,000.  ALS – 25,000. I am by no means belittling or downplaying these victims – but it’s safe to estimate that the number of CPS patients in the country from all causes – unrecognized – is easily one and a half million. Most of them suffer without ever having any idea why – because they have never heard of CPS.Where are our telethons? Our fund raisers? Our research foundations? Our organizations and celebrity spokespeople and headlines?  CPS is not even listed on the CDC listing of diseases! Until we make our story and our situation as recognizable as these others, we will never have the cure we so desperately need. But the CPS victims have to do it themselves. The task becomes even more daunting because of the pain we feel, and the weariness it brings.

Yes, I do the math, and the sorrow from those numbers is almost overwhelming. I think about all the CPS sufferers who endure this pain because of  closed-head injuries, spinal cord injuries, MS and epilepsy and all the other diseases that injure the Central Nervous System. I think of one of our members, Frank, who we recently found out committed suicide because of the uncontrollable pain. I think of Bud, one of our most constant members, who just got so tired that he literally “”gave up the ghost.” This morning, I sat on my bed thinking about what waking up each day means: another day of pain, the exhaustion it brings, of the everlasting energy-suck of CPS, and of how lucky I am to still have a medicine that keeps my pain *somewhat* in check. The fact that I have some energy, and some control over the pain, means that I am far more capable of accomplishing things than those of us who have *no* surcease, no relief, and cannot do more than suffer and stay alive. That I do not do more makes me feel very guilty.

 I feel so guilty, because I let the whole year go by without applying for the Pepsi Challenge grant.  There just was not enough time in the day, lot enough motive force in the body, often not enough intellectual vigor for me to do much of the work.

 We are all so aware of the fact that the medical field *must* be made aware of the fact that this pain exists for so many millions and millions of people worldwide. Until physicians are aware of its existence, they will continue to abuse us and treat us as drug-seekers, as crazy, irrational hypochondriacs, as mystery patients that they wish to have nothing to do with. The sort of indignities, frustrations, insults and despair that I read of every week in the Yahoo CPSA group, and in the Facebook group, will continue. Our member Jessica related an experience just this week experience with a gastroenterologist, who hadn’t even looked at her history, and then had the unmitigated arrogance to tell her *not to cry* as she passed through the waiting room, was both heartbreaking and maddening. Yet we all know these testimonies from the “front line” of the CPS struggle so well. We are ignored, given useless analgesics, refused prescriptions that might actually alleviate the pain, even put into psychiatric institutions – as if “accepting” the state we are in will somehow make it better!

 I’ve been reading many of the articles in “Practical Pain Management,” and must thank Mary and Jamie for bringing it to all of our attentions. One thing that is obvious from reading through their archives is that pain doctors have very little clue about the huge number of CPS patients there are out there. I argue that *all* of the neuropathic pain conditions of the Central Nervous System fall under the rubric of Central Pain Syndrome.  There are variations due to cause, but the unending nature of the burning/cold, numbness, electrical buzzing and sharp stabs are the same for all of us. All that varies is the cause, the progression and timeline of the development of our common symptoms, the intensity, and the ability of the available drugs to treat each case. Yet the medical field doesn’t seem to have made the same connection – the pain of MS, of epilepsy, of stroke, of IED-explosion survivors, of spinal cord injury victims is ALL Central Pain Syndrome pain! We are ALL in the same category – and we deserve to be recognized and cared for.

 We all deserve, and must begin to demand, that medical science find relief and a cure for the most excruciating pain ever experienced by Man. We have committed no sin. We do not deserve to be cast into the fires of Hell for our lifetimes.

 It’s been a little over four years since my “rebirthday.” That second life has the outward appearance of my first one: same family, same home, same history and tastes, and what looks to be the same body. But this second life has one  indelible truth that makes it utterly different. It is a truth only known to me, and invisible to every other person in the world. It is the pain, the unending, ever-present, indescribable, excruciating pain.  Every day, I ask myself, “How can I end this pain? How can I help others who, like myself, live with this truth? How can we stop this?”

 I still have no answers. I don’t have the wherewithal to develop a cure. Bit I do have the faith that if we can educate the physicians who have us as patients, can educate the entire medical and research field, about the truth of our agony, that they will find a cure.

 These doctors entered their profession in order to relieve suffering. There is no greater suffering on Earth than that of the Central Pain Syndrome patient. If we can only help them understand our truth – which is the truth of the human body’s nervous system,  then there will be eventually be someone merciful enough to find us a cure.

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