For a long time the body modification community, while deeply isolated from the mainstream in a way that may be hard for younger people today to really relate to, had a wonderful sense of solidarity — a sense that we’re all in this together, a sense of all supporting each other’s personal paths, from the subtle to the extreme — but now it feels like there’s infighting and intra-community prejudice. We once all worked together to better ourselves and share our experiences — for example the creation of BME’s various knowledge-bases (birthed from the earlier Usenet FAQs) that brought the world level-headed accurate information on modifications and their risks, as well as the thousands of detailed “experiences” that people wrote — whereas now it seems like the majority of modification media is just about posting pictures, devoid of any real stories or information, reducing them to visual pornography for people to “cheer and jeer” at. All of these changes have slowly eaten away at the character of the body modification community and changed it in subtle and unpleasant ways.
In reading Larratt's writings over the last few years I knew his health was not good. However, his suicide comes as a shock in part because he deeply loved his daughter Caitlin. For him to end his life and not be a part of her life must have been exceedingly difficult. In his words:
The last three or four years have been a daily struggle, beginning with a multi-layered pain made up of a never-ending, never-lulling dull throbbing from the core of my muscles beginning in my legs and eventually spreading out over my entire body, coupled with a constant burning sensation in my skin that made it impossible for me to feel anyone’s touch without it being a bitter agony. I held out hope that a treatment for the pain if not a cure could be found, but every difficult diagnostic step only confirmed the degenerative condition replacing healthy tissue with junk calcium was incurable, and every new attempt to treat the pain only emphasized that it was inescapable. Not only that, but every day it grew. As impossibly painful every day of this process has been, it has been made more difficult by knowing that the next day will always be worse, and every day that goes by I have less defences against a more powerful foe. There was a time that I believed that I could cope with the unending pain, but then the pain’s root began catching up to me as less and less healthy muscle tissue remained. Every day I could walk a little less. Carry a little less. Use my hands a little less. Bit by bit it chipped away at me. As I write this even standing up is indescribably painful, even sitting up, and the idea of walking nightmarish, although I have done my best to hide it and keep it buried.
I wish I could have exposed Larratt to the disability rights community. Perhaps it would have made a difference. Perhaps he would also have better been able to assert himself as he questioned the quality of the medical care he received. On this front, I am sure he is correct. As a modified man he must have experienced significant discrimination.
I have mixed feelings about the medical treatment that I’ve received. From everything I have seen and understand, I don’t believe that anything could have been done to fundamentally “cure” me (although I suspect that cures for these sorts of genetic conditions will come in a decade or two — I wish I could have made it that long). This condition is what it is, and it was probably fated for me the day I was born... I believe that there were fundamental shortcomings in the way both my condition and my pain were treated, and that the last few years could have been much more pleasant if the pain had been more aggressively managed. I believe this was in part because of the prejudice of multiple doctors due to my appearance causing them to stereotype me as drug seeking (and the simple reality is that it can be hard to tell, and we are so cruel as to prefer to “punish” the sick than to “reward” the mentally ill). I wish there was some way to make those doctors understand the cruelty they enacted. A patient should have the right to a pain free life, even if that comes with some risk.
This passage is heart breaking as is his championship of assisted suicide in Canada. Obviously I disagree but have always felt I learn far more from those I disagree with than with those I share similar views with. Today is not the day to disagree. Today is a day to mourn an important man whose death will touch people such as myself that knew Larratt by his works alone. To his family I offer my thoughts and good wishes at a terrible time in their life. I hope their grief will not be overwhelming. Tonight I will pull out I am the Strength of Art, Larratt's first venture into the "real world" of publishing and pour myself a stif drink in his honor. Larratt made only 500 copies of this book and it was "hand assembled by either Caitlin or I while sitting in my back yard so not only are holding what I believe is a piece of art, but a piece of history as well (maybe in ten years you can sell it on ebay". Rest in piece Shannon Larratt.
The observation about pain relief is common from many chronically ill people. Many of them report that they cannot get hold of strong painkillers because doctors presume they are drug addicts. A well-known British health campaigner of my acquaintance, Sue Marsh (she has Crohn's disease), has said she has faced this prejudice both in hospital and at home (she is also very restricted in what painkillers she can tolerate). The needle packs you get from chemists to self-inject medicines are known as "junkie packs", even for people who need them for legitimate medication.
ReplyDeleteI have heard of a doctor saying he would rather feed twenty bullshitters' drug habits than deny one seriously ill person pain relief. But there are a lot who take the exact opposite approach.
I knew nothing of this man or his blog but that is an extraordinary letter. Sometimes I'm so tired I forget about the importance of being fully alive. I'm grateful to be reminded by his words. Thank you for that link.
ReplyDeleteMatthew, Physicians that specialize in pain relief are an odd lot in my experience. I can readily imagine a great deal of bias exists in this field. How pain is experienced differs radically from person to person. Human physiology is also profoundly different as is the way an individual reacts to pain. For instance I need significantly less medication to relieve pain than most people. The point here is that pain relief is as much an art as it is science. Your mention of "junkie packs" is deeply disturbing as it reveals an ingrained bigotry. The sort Larratt experienced.
ReplyDeleteA. It was indeed an extraordinary letter. He was an extraordinary man.
Caitlin is Shannon's fiancee. Ari (Nefarious) is his daughter.
ReplyDeleteAshtronaut, You are 100% correct. A stupid error on my part. Thank you very much.
ReplyDeleteWilliam, I'm curious if you spelled "peace" (you said 'rest in piece') incorrectly on purpose? Maybe a play on words? Or it is strange to write it differently, as your last name is Peace?
ReplyDeleteJenny, Given the context, I would not play with words. It was a typographical error.And yes my last name is peace.
ReplyDeleteCaitlin was never Shannon's fiancee. Also, he killed himself as a side effect of the massive brain damage he'd done to himself via extreme alcoholism.
ReplyDeletep0ok, what an unnecessarily mean comment to make, more than three years after. Apart from it pretty much being none of your business, there are public records of Shannon & Caitlin's engagement, and they certainly were life partners (defacto spouses, whatever you want to call it), raising Shannon's daughter as parents together for as long as they could. With regard to your slanderous medical diagnosis – well, let's leave it to more sensible souls to form their own opinions about your qualifications in this area.
ReplyDeleteI'm hope your life isn't as full of bitter envy as your comment would imply.
Well, all of that is bullshit, Miss Lisa. Shannon Larratt was a sociopathic asshole who did more damage than was ever his right. He was a blackout alcoholic who suffered neurological symptoms due to that same alcoholism. I knew the man well-- as obviously you did not.
ReplyDeleteHe was a lying sack of psycho shit, and truthfully know one who really knew him deeply misses the motherfucker.
At all.
The world is a better place without him in it.
"The world is a better place without him in it."
ReplyDeleteThat is a profoundly sad and hurtful thing to say to those of us who knew Shannon and appreciated our relationships with him.