The post I made while in Seattle was lost by Technorati so no one on email was notified; it has it’s own humor and can be read here.
What I want, maybe need to write about may make you uncomfortable because what I am going to write about you: the readers, the comments and my feelings of helplessness. I have been receiving support emotionally, in comments and even gifts from readers. And whether I deserve that support or not, I am very thankful for it. And I wish I could be there like that too. I lie in bed and think that ‘if only’ I was stronger, or could be awake more then I could at LEAST show my appreciation by commenting on your blogs as well, but often I do not have the psychical ability to do that. Which doesn’t mean that I don’t think about you, about the problems I read that you struggle with, the medical and social conditions you are in, and the ways I read you try to keep your spirits up, the ways you hit dark patches, all of it. So it means more that, in the midst of often your own shit you take the effort come and let me know, “Hey, I’m here listening, I like hearing you. You matter.” And that often I cannot do the same back, leaves me with a feeling not of guilt, but of frustration and helplessness.
This is how I feel: I lived the life of privilege that being an able bodied person gives. I did not think of any of you at all. I had other causes to fight like LGBT rights and feminism and sorting my crap out. I was living the life I “deserved” (insert hollow laughter), that I had worked hard to get my book published and my academic achievements. But now, my publisher hasn’t contacted me since getting sick (I don’t know if they even know), and all those people who shared Ph.d offices with me or those other interests couldn’t give two shits about what happens to me day to day. They are still off pursuing that life of privilege which able bodied people do. But the tips and tricks on living this disabled life, from dealing with pain to taking on agencies and paperwork has been given to me by people HERE online, those who have a pretty full plate medically. The people who have kept me going, have written me, have supported me are people who I finally SEE (well, not literally because I haven’t met any of you yet).
I have had my road to Damascus experience and what use is it, now that I am too fucking weak to be there for you when you need me? The truth, though you have no need to believe it, is that I think about you, the ones who share on your blog (I don’t want to list names) and I cry. I weep, partially because that no one, NO ONE should face a medical system alone, should face life with a disability alone, should face what so many face without the support they deserve. But equally the tears of frustrations that there is absolutely nothing I can do, right now, and maybe ever. I can’t even always return emails. My conversation with God recently has been a bit like this:
Why? Why would you show me this, help me understand their lives, their frustrations, their hurts, their human needs of comfort, or simple freedom from pain if there is NOTHING I CAN DO. What is the point of enlightening me if the most I can do is watch? If I could take on their situations, or pain, or conditions, I would. Not because I am a masochist but because I don’t believe good people can sit by, having been enlightened and pretend to not care.
But of course, I can’t take on your pain, or swoop to the rescue, and sometimes I can’t even comment back because I am on my own path which leaves me, right now, with only one determined and focused outlet. The voice. I can’t know or speak for people with disabilities; I won’t. But I can speak for one voice and maybe in it others will find echoes of their own. That is all I can do now, is write. It isn’t enough, and that is what this apology is about. As well as the thanks for all those who are and continue to be there. And maybe there is something wrong about me going to sleep thinking about people I have never met and would willingly suffer for if there WERE a way to take “the blue pill” which transferred your condition to me. Maybe your blog isn’t all of you or who you are ‘really’ and you know what, I don’t care. If you are hurting and struggling and if I could take that away I would. I would. I don’t need to meet you or determine your worth or how much I like you. That’s either what I have learned or just who or where I am.
Too late enlightened. I wish I had 'woken up' and had my eyes opened when I could have made a real difference. I wanted you to know that though I blog about me; I think a lot about you. It is just this is the only way I know how to help. Maybe to reflect a thought, or insert a laugh. I wish it were more. I’ll stop now because I’m pretty sure we are all embarrassed enough.