As the saying goes, “by the time you read this I’ll be dead.” Caitlin has probably posted it by my request, or it’s been posted as part of a dead-man switch. I have known this was coming for years, at times even hoped for it, and most of that time I haven’t ever been afraid of it, although as it’s grown closer I’ve felt equal parts dread and relief, with a little bit of panic mixxed in. I wish I could have lived much, much longer as there is still so much I want to do and see and be a part of, although in the time I had I could not have asked for a more wonderful life. I’ve had the opportunity to do remarkable things, see my dreams made real and changed the world and the lives of many for the better, loved and been loved, and have an amazing daughter who I hope will have her own wonderful life. My biggest sadness is not being able to be a part of more of it, and I have spent many days in tears trying to figure out a way to squeeze more meaningful time out of this life. There’s just so much more I want to do — and I think everyone knows I’ve done a lot. But not enough. If I knew my live was going to be this short, I would have pushed harder, not frittered so much of it away. I wish I’d seized every single opportunity, not just “many of them”, thinking “I can do that next year.” I’ve always thought that for me the “undiscovered country” was in the Star Trek sense of the word — that is, the glorious future — but instead I’ve gotten stuck with Hamlet’s “undiscovered country”, or death: “But that the dread of something after death, the undiscovered country, from whose bourn no traveller returns, puzzles the will, and makes us rather bear those ills we have than fly to others that we know not of?”
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. In addition to the muscles breaking down, neurological and autonomic problems have been creeping up, either because of the condition itself or because of the treatment. I’ve certainly said this before, but I don’t feel like I have the strength to keep trying less and less likely options. My mind is the only thing I have left. This has actually been written over several months as I try and assemble it in small pieces while I have enough lucidity to do so. The remainders of my days feel emptier and intellectually lonelier — I can’t begin to describe the horror of going from a voracious reader and consumer of knowledge to someone who looks at a page full of words and sees only a hash of lines and shapes, devoid of real meaning. In any case, I’m done. I’m tired out. I don’t want to do this any more. I have had a very good life, but it’s not good any more.
I do admit that the closest I come to any sense of “life after death” is my nagging suspicion that we’re living in a simulation… I don’t know that I buy the statistical argument (since there is only one “real” reality, and a huge number of simulations, we are almost certainly in a simulation), because it makes so many big assumptions, but there are other convincing hints — the quantized nature of reality, so of the weirdness at the edges of perception, and so on, to say nothing of how “special” life feels. If such a thing is true, I don’t know if perception continues outside of the simulation. I doubt it to be honest. But thinking about such things makes me value both the unreality of existence, the interconnectedness of consciousness, how temporary existence is, and also how permanent and real it is, if that makes any sense… I do hope there’s “more”, but I have accepted the likelihood that there isn’t, and find comfort in both. And really, if it’s a simulation, I have no idea of you just blip out of existence and get your data set analyzed, or if there’s some eternal being that actually experiences your life post-life, as if waking from a dream or playing a game, or if we reboot in some technological reincarnation. We’re all the centre of our universe. That is, right now I feel I could be the only sentience in world filled NPCs. But if you’re reading this, and I’m gone, well, then I guess I was the NPC and you’re the only true consciousness, haha. Naw, I don’t really think any of think on any serious level but I do enjoy thinking about it. And to be clear, as a “no doubts” atheist, I am quite firmly rooted in reality the majority of the time.
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. On the positive side, I was given genetic gifts that made me uniquely qualified to achieve the things I did (and again — I wish I had done more), so I really can’t justly complain that I got some bad with the good. But I do believe that there were fundamental shortcomings in the way both my condition and my pain was 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. I understand that doctors are pressured due to our “war on drugs” mentality, but I don’t think all the blame should go on the politicians. In some ways it’s pointless to second guess any of that now because what’s done is done, but the other side of that coin is that countless others in Canada and abroad are going through this right now even if I’ve escaped it. As to the shortcomings in treating my core disease — I’d say that I’ve had virtually no treatment, and unfortunately that is true for almost every sufferer of rare genetic myopathies around the world. Support groups online are horriffic. So I don’t think this is a problem with Canada per se, just that when it comes to genetic diseases, I’m just a little too early in history still. I have also felt very alone when it comes to end-of-life counselling. For a lot of this process I have felt very alone — really, I think the only person who’s really been able to understand it is Caitlin because she’s the only person that’s seen it all first hand and in private with guards down. The last medical thing I want to mention is that I want to strongly advocate for “right to die” legislation. Canada currently has no such thing. It is my strong believe that if I had known that there was a “safe”, pain-free way for me to go at a time of my choosing, hopefully at home surrouded by love, it would have brought me not just enormous peace, but I believe would have given me strength to fight this even longer than I have. As Isaac Asimov said, “No decent human being would allow an animal to suffer without putting it out of its misery. It is only to human beings that human beings are so cruel as to allow them to live on in pain, in hopelessness, in living death, without moving a muscle to help them.” And this is how I have felt for a long time now, trapped in this nightmarish prison of pain. Losing my motor skills hasn’t been fun either, but the pain is the worst part. After writing that I can’t help but think of Keats. I really do hope people will one day have as much right to control their deaths as to control their lives — it is in many ways, the fundamental human right, even more fundamental than thought and self-expression.
Darkling I listen; and, for many a time
I have been half in love with easeful Death,
Call’d him soft names in many a mused rhyme,
To take into the air my quiet breath;
Now more than ever seems it rich to die,
To cease upon the midnight with no pain,
While thou art pouring forth thy soul abroad
In such an ecstasy!
Still wouldst thou sing, and I have ears in vain–
To thy high requiem become a sod.
It’s hard not to quote the whole thing — take the time to read it if you don’t know it — and while these days I’ve been feeling more like the author of the poem, at times when I am able to get my head over water, I wonder if there is a part of me that is more nightingale’s song than sod… Was it a vision, or a waking dream? Fled is that music: —-do I wake or sleep?
As I mentioned, as an atheist, I am thoroughly convinced that this is the literal end of my adventures, and again, I do find some comfort in that, knowing that my suffering is over. But I was also raised on stories, and I believe that real immortality comes from the stories that are told about you and your life and the way your deeds live on in the lives of others. I have some worries about the process of dying (that it will hurt, or that it will “go wrong” in some way), but I have no fear of death itself in part because I know that the life I chose allowed me to have a special role in changing the course of human civilization — as egotistical or even petty as that may sound, especially if you’re in the group of people that sees body modification as “just another fashion”. Perhaps it’s petty or vain to give body modification such significance, but there’s never been a point in human history where individuals have had this level of self-expressive control over their morphology and physical decorations. The work that I was a part of enriched changed the lives of millions of people for the better (and yes, a few for the worse, but I have no doubt it was a dramatic net positive), and probably even saved the lives of thousands. A friend told me once that my role was that of a “catalyst” — that I started fires inside people that helped them to change themselves (or become themselves) in positive way. I feel so lucky to have found myself in that position, and I want to offer my heartfelt thanks for everyone who made that possible. And I’d like to think that even though I was a big puzzle piece in body modification, that I was a smaller but still important puzzle piece in a larger movement of people from all sorts of diffierent subcultures fighting for mutual support in a diverse patheon of self-expression and dream chasing. I soemtimes regret that I never finished my memoir. I suppose if there’s interest in it in the future, Caitlin has all my notes for it, all my blogs, all my personal photos and videos, to say nothing of the many people who could contribute stories, so if there’s a place for it, I’m sure it will happen. If not, well, let me smile thinking that there is and let that illusion return to dust as I do.
In any case, on body modification, I hope that others will continue this mission. For a while I thought that BME was no longer needed, that its core mission had been achieved. But when I started blogging on the subject again last year, it became clear to me that while there were many, many sites and people posting body modification media, there are very few people providing the mix of community support, political activism, and hard information that BME always strove for. I think that BME can still provide that, but it’s not going to happen without a lot of good people stepping up to help, because it’s clearly having trouble keeping its head over water for a broad range of reasons. 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. I do think this is a fixable problem though, and I have talked to many, many wonderful people (both artists and enthusiasts) who have a strong passion for body modification that I am sure could be part of a restoration effort. I truly hope they will fight to keep changing the world for the better. I still believe that BME is the best place to use as a home for this due to the invaluable content it contains and the inertia it has (and I hope Rachel will accept the help that is offered), but this change has to be bigger than BME as well. I hope that everyone will use their voice for good — if you see something interesting, try and post it along with information about it (or even do a five-question interview), speak out against prejudice and support people’s self-expression, even if it’s not something you would ever want to do or can even relate to, and support the best parts of the industry. Sometimes people give me credit for the things BME achieved, but the reality is that whatever role as a guide or catalyst I played is nothing in comparison to the community as a whole — the little contributions we each made added up into something colossally beautiful. That needs to keep happening. I could go on and on, but I’ve accepted that the time has come for me to rest. I am so proud of everything we have achieved together and I want to see it go on forever. I believe in the good in this community and the importance of our contribution to the human spirit. It would be a very sad thing for this mission to grind to a halt.
My only real regrets lie with not being able to spend more time with those who stay on… My pain is over now, I hope that those who remain can find some solace in knowing that I’m not suffering any more. I wish I could have given them more and especially when it comes to Caitlin and my daughter I feel like they’ve both given me so much more than I could ever return. Caitlin suffered through my immature years, and when things finally started falling into place for us, it all got taken away so cruelly, and she has suffered alongside me though all of this. I owe her more than I could ever explain here and love her so much. And my daughter is probably singlehandedly responsible for turning me into a mature person, and is the reason I’ve held on for as long as I have. No one have I loved more. I would have given up years ago if it weren’t for hoping to spend more time with her. That brings me to one last thing that may be in bad taste. I’ve dedicated my life to helping build and protect the world of body modification and self-expression in general. Even though I was only a small part of the community that ultimately deserves the majority credit, I’d like to believe that I’ve contributed in a unique way, and personally touched many lives for the better, and that the world would be a quite different place were it not for the specific flavor of the efforts I was catalytic in. Of course I have made many mistakes and at times missed my ideals due to my own shortcomings, but in general I’ve tried to help create a world where everyone could express themselves as felt right, and be the person that they imagined themselves to be. To push for people to make their dreams and passions come true, to find new paths to joy and fulfilment, to define a better sense of self and a sense of ones place in the cosmos, bound by awareness and intellectual honesty, caution while exploring the reckless, and mutual respect. I’ve tried to encourage people to uplift each other and be good to each other, especially when it comes to self-expression, and I hope I’ve made meaningful contributions to the so-called human condition. If I have touched your life in some positive way, and you feel you want to give something back to me personally, I am hoping that there are some among you who would be willing to contribute to a trust fund to support my daughter. The person I trust to manage this is Caitlin, who you can reach by email or PayPal at email@example.com
Finally, a few people have contacted me in the past asking for ashes for creamation art and body modification projects (ink rubbings, implants, and so on). Of course I’m not offended if everyone changes their mind, but I have to admit that I love the idea of living on in the artform (and community) that I’ve loved so much in such a way. Again, the right way to do that would be to contact Caitlin (I just mentioned her email), and ask her to send you some — just be willing to contribute to a share of the costs of cremation of course.
Thank you to everyone who made my life wonderful. I love you all. I wish there had been more of it, and I wish I had more to give. I’m sorry there is so much unfinished, so much left to do, but I am glad to know many wonderful people who will complete it. Last minute reflections and bits of advice… seize every opportunity that’s in front of you and live life to the fullest. Even with everything I’ve done, there is so much more I wish I’d squeezed in. Don’t let a single day (well, maybe a single day) be idle. Have every adventure you can, and explore every street — although treat the one-way streets with caution. Don’t fritter you life away into television, random browsing, and pointless substance abuse (I have at times been guilty of all of these) — although remember there are valid uses for them, both for growth and entertainment. Have passion about the future, and in the present. Especially if you’re young, push your education and your skills to their limits on every level. Don’t just graduate highschool, get a degree, get a doctorate if you can. I know these things aren’t for everyone, they they are for most, and they also open doors to some of the most special adventures. Even if you can’t afford proper schooling there are many, many ways to learn, free courses to volunteering, and so on. Value your health, and the health of our planet, and strive beyond its borders. We have such a glorious future, but never forget that your part in that future could end at any moment, so live a life that you can be pround of. And of course love and treat each other well.
As much as these last years have been the most difficult I can imagine, and there are still many deeds to be done, please know that I have had a wonderful adventure and enjoyed it immensely on the whole.
Live Long and Prosper!
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When Time, or soon or late, shall bring
The dreamless sleep that lulls the dead,
Oblivion! may thy languid wing
Wave gently o’er my dying bed!
No band of friends or heirs be there,
To weep, or wish, the coming blow:
No maiden, with dishevelled hair,
To feel, or feign, decorous woe.
But silent let me sink to earth,
With no officious mourners near:
I would not mar one hour of mirth,
Nor startle friendship with a tear.
Yet Love, if Love in such an hour
Could nobly check its useless sighs,
Might then exert its latest power
In her who lives, and him who dies.
‘T were sweet, my Psyche! to the last
Thy features still serene to see:
Forgetful of its struggles past,
E’en Pain itself should smile on thee.
But vain the wish — for Beauty still
Will shrink, as shrinks the ebbing breath;
And women’s tears, produced at will,
Deceive in life, unman in death.
Then lonely be my latest hour,
Without regret, without a groan?
For thousands Death hath ceas’d to lower,
And pain been transient or unknown.
“Ay, but to die, and go,” alas!
Where all have gone, and all must go!
To be the nothing that I was
Ere born to life and living woe!
Count o’er the joys thine hours have seen,
Count ‘er thy days from anguish free,
And know, whatever thou hast been,
‘T is something better not to be.
- Euthanasia /// Lord Byron
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