Sunday, July 27, 2008

Living Forward -- A New Normalcy

Here is a link to an excellent article about "Living Forward" with a disability

and in that spirit, I decided I would just merge my 3 blogs into one, because it reflects who I am, as a whole person. I started out by writing about my life as an ALS patient. Then, I started a blog about my life growing up as a boomer. Then, I recently started a third blog about Rego Park. But then I had less and less to say about ALS, not because I don't have it anymore, but because my life isn't only about ALS anymore. I am forging ahead in a new normalcy. I am lucky to have reached a plateau in my progression, and I hope to stay here for a long time. I have had to find a new purpose, and a lot of new people in my life. Sadly, most of the people I knew before have had trouble dealing with who I have become. Who I have become is not fundamentally different from who I was. But the outside packaging has become too scary and too hard to deal with, for most of my friends and relatives. So I went through periods of intense loneliness, depression, and disappointment. I still go through all of those, but I am able to take it for exactly what it is: that other people can't take my disability or that they can't adjust to the more dependent person I have to be now. I can't just get up and go the way I used to. People have to come to me and do certain things for me. Whether that means that I attracted only takers in my former life, who depended on what they could get from me, and now can't give, or whether these relationships meant more to me than they did for the other person, is neither here nor there.. What is important is that I have a few of the old people who could make the transition with me, most who couldn't, and some new people who never knew me able-bodied, and who befriended me despite, or maybe because of, ALS.

At this time last year, I had hopes -- a cure for ALS, the chance to move to a more suitable [accessible] place to live, fulfillment of a "bucket-list" of things I wanted to do before I die. Now I have no hope of a cure in time for me, I'm stuck by circumstances in a very unsuitable and inaccessible apartment, with no hope of ever being able to get out. And, the bucket-list? Well, let's just say it kicked the bucket! With very few people in my life willing or able to accompany me places, and no more money to pay for alternatives, I have very little hope of going very far away from my four walls, and no hope of my finances ever improving. On the top of my list was to publish a book. I was willing to self-publish to move it along, but that's expensive. It's not likely that a legitimate publisher would pick it out of the millions of manuscripts they receive every year. So I am down to writing 500-word articles for online publication for a few dollars, or gift cards. It's a daily struggle just to have enough to buy groceries and health items, let alone pay the bills and high-interest credit-card debt from before ALS.

Anyway, this is how it's supposed to be with a catastrophic illness. I am supposed to be worried aout where my next penny is coming from. I'm not supposed to be able to buy anything beyond absolute essentials. I'm supposed to be just grateful to be alive, and grateful for the 3 or 4 people who find time in their busy schedules to do my bills or meet me at a museum. I'm not supposed to expect anything more. And I do look at children with cancer, homeless people, and the people in Darfur as much worse off than I.

And I've learned that a lot of those people who come to support groups who claim to be surrounded by friends and "loved ones" are often saying what everyone wants to hear, because the friends don't come as often anymore and the "loved ones" go to the caregivers' group and cry about how exhausted and angry they have become, even admitting that they never imagined what they had signed on for and saying that if they had known, they never would have done it, but in the same breath saying that they don't regret it and would do it all over again [I know "huh?"]. I heard one "loving, supportive" wife admit that her [very wealthy] husband's decision to go on mechanical ventilation made her furios ["what about ME?" she said] [He ultimately went to the ER in crisis, and was not intubated, I imagine on his wife's orders, and died. She is living very nicely on the money he left, which would have been used up if he were allowed to live on a vent, possibly for many more years]. All this makes me happy I am not married, because my decision not to "vent" was circumstantially made for me.

And so I will put everything in this one blog, because I am not just an ALS patient, and the people who read this like to read everything else I write. And maybe one day, I can find the resources to publish a book. That's about the only thing left on my bucket listthat is remotely possible, because I don't need anyone to do it with me. The trips, cruises, the one-day excursions, painting my apartment, making it more accessible, tooth whitening, anything not covered by medicare or medicaid -- forgotten!

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