Blog > Thoughts > Sean's Thoughts > Life, BIID, Surgery, Value, And All That Jazz
Life, BIID, Surgery, Value, And All That Jazz
Written by Sean on Saturday, May 30, 2009
Today finds me empty, deflated. I fail to see what the point of continuing like this is. There are happy moments here and there, but they are far from sustained, and they are overshadowed by a brutish despair.
I have heard there is a new surgeon willing to do amputations. Don’t ask me for details, I don’t have any. Don’t conjecture here, we don’t want to risk exposing this doctor, for those who can get surgery that way. I am simply saying, there’s a new surgeon. This, to me, is great news, even though it has to remain on the black market.
I asked of the "gatekeeper" if the surgeon was willing to do spinal cord transections. The answer was negative. I’m not terribly surprised. That doesn’t mean I’m not unhappy. Over the last few years, I’ve been approached by several people claiming to have access to surgeons. Fakes & cons. When there is a real guy coming up, hope surges, of course.
Then it dawned on me. Even if the guy was willing to do a spinal cord transection, I’d be fucked. I could not afford it. I cannot raise that kind of money. The way my life has been going these last few years, I don’t even have a hope of saving towards that goal. I’m well an truly fucked. In the ass. By a baseball bat. Without lubricant.
I asked someone why I should keep going. He told me that I should keep going because I give hope to people. I’ve received enough feedback from readers of this site over the years to believe he isn’t wrong.
I give hope to people.
Is that a sufficient reason to keep going? I’m an altruistic kind of guy, but there comes a point where it has to be about me. I can’t keep going, surviving against all odds, for someone other than me. The reason to keep going has to be coming from within. And I don’t have that. I have to find value, for me, in my own life. What is life’s intrinseque value?
To keep going like this would be to make myself a martyr to the BIID cause. I have no great desire nor belief in martyrdom.
Then I started thinking, if I’m here for everyone, here for my readers, here to give hope, why shouldn’t I expect something in return? There are between 500 and 1,500 unique visitors to this website every day. A lot of these are obviously repeat visitors. But what if every regular visitor donated an average of US$20? That might raise sufficient funds for surgery. But I don’t want to ask that of you. I believe I shouldn’t expect that of you, and I don’t. But it’s a daydream. If I do so much for people, perhaps a lot of people could do a little bit for me and it would be one part of the puzzle solved. But there are problems with donations anyway. For you to give me money, we both have to divulge our real identity. It’s a big risk. A risk I am not ready to take. Not for you, nor for me.
I’m reminded of the final line of that Traveling Wilburys song: "Get out, it’s the end of the line"
Tags: Amputation, BIID, Hope, Spinal Cord Transection, Surgery, Value
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6 Comments
3 On 30 May, 2009, Phil said:
Dear Sean,
I just can offer one helping thought: BIID goes up and down, our spirits go up and down, and the next phase of relative relief will come soon. So give yourself hope – better days will come.
“I’m an altruistic kind of guy, but there comes a point where it has to be about me.”
Yes, you are very right. I don’t know you well enough, so I speak about myself: I tend to engage in BIID activities a lot, too. Writing in groups, particularly in the few German groups about BIID. Participating as one of three BIID persons in a commission of researchers in the German speaking countries who are working on BIID. Trying to convince people of taking part in research projects. Etc.
This gives me some relief, because I think that I am doing something about my BIID AND I do something that might help others and myself in the long run.
BUT sometimes it is very necessary that I keep away from all this – the BIID community, computers, science and all that. It is often better to do something really stupid or egotist, being lazy, not caring for anybody but me – and that does me good and makes BIID diminish somewhat.
So give yourself the freedom to be egotist. You will never be really egotist, even if you try.
And that means give yourself the freedom to earn money. I am working in the non-profit sector, too. I think it does not good. We tend to exploit ourselves. That’s not good – for nobody.
Finally, you brought up a good idea. Why not collect and donate money for those who can’t afford it? This CAN happen anonymously. One just has to send bank notes in an envelope to the address of a friend of yours, folded in a card.
Or we could do it via a notary or lawyer or a foundation or other kind of charitable organisation – maybe we have to found one, but why not?
Presently, there seems to be no surgeon who would do spinal cord surgery. But we should prepare for the day, which will come, if they don’t find another cure.
Your text reminded me of a famous speech of Harvey Milk, the first openly gay man who was elected into office in the US. You can listen to it here:
http://www.youtube.com/watch?v=MbWDNM0wuAc
and another speech here:
http://www.npr.org/templates/story/story.php?storyId=96865519
Sean, your work is infinitely precious for all of us. You are running THE web site with information about BIID (biid-info.org) and this “blog” (in fact it is much more). Here’s a big big
T H A N K Y O U
from Germany. You are one who gives me hope.
Best wishes for you
Phil
4 On 30 May, 2009, Sean said:
@Phil, thank you for your support. Your comment echoes something I’ve discussed before (not sure if it was here or in email), that while I started this site for myself, and I get a lot of personal benefit from blogging, I am also aware that it helps others, which in turns brings me satisfaction. Helping others helps me. Helping myself helps others.
5 On 30 May, 2009, Seth said:
Sean, you already know my view of you. I’ve stated it numerous times. I will say though, I would be more then willing to donate money if you asked for it. All you would need to do is setup a PayPal account. It’s pretty straight forward. If you were to set that up, I would be more then happy to send you money. Hell, if it helps you SAVE some money, I’d also be willing to offer you free web hosting for your domains. If you want to take me up on that offer, hit me up in an email and we can discuss it.
No matter what happens, whatever you choose, just know that I lurked here for a long time, trying to get the balls to post and say thank you. In one of my comments I blamed you. Not for anything bad, but for making me realize that I’m not nuts, and that I’m not alone. We didn’t ask for this, and we do what we can to cope. Like most issues in life, there comes a point where we ask if it is worth going on. Personally, my answer to that is yes. No matter what the reason, there is always a reason.
Again, as stated on Twitter, I hope all is well and does nothing but gets better. I hope one day that you get what you want.
Hey Sean, I can give you some $ also. You should open an account and if enough people give you money maybe it will make a difference. Plus, I bet it\\\’s just a matter of time until a surgeon decides that spinal cord transection isn\\\’t that different than amputation…
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1 On 30 May, 2009, Cath said:
Sean – don’t ever give up hope – if it’s just a case of fundraising you’ll find a way somehow, I’m sure of it.