Six
years ago today, I had enough blood drawn to perform every test that
could be done - as part of a work-up for what was not MS but presented
with all of the same symptoms (and more). As I was exiting the parking
garage at the medical center, I heard a loud pop and thought I had run
over something. Since it was a metallic sound and I feared it might have
punctured a tire, I got out to look and found nothing.
I few blocks into the drive home, I felt extremely weak. I figured it was from the amount of blood they had drawn and decided it would be safer if I stopped to eat something and let the weakness pass. I drove to what had been my favorite deli for a bowl of soup only to discover it was gone. Went on a few more blocks to my favorite salad place and there were no parking spaces. So, I came home, called Briana to cry on her shoulder and she brought me a black and bleu salad that I usually love.
But it tasted horrible this time. Almost like the metallic sound.
It was hours before serious pain and weirdness set in. This time, I called Jessica to cry on her shoulder. Really to see if I sounded strange to her because I thought I might be having a stroke. She said I didn't sound slurred but I did sound scared and that wasn't like me, so she wanted me to call an ambulance.
I spent a week in intensive care with a subarachnoid hemorrhage of unknown etiology. After two cerebral arteriograms, they were certain it was not a stroke but still didn't know what caused the bleed. Weeks later, a post swelling and bleeding scan showed scar tissue consistent with the healing of a ruptured aneurysm.
I feel extremely lucky to have survived this with no residuals that doctors can see, although I know small ways in which I haven't fully recovered.
Before this incident, I had already been determined totally and permanently disabled with juvenile rheumatoid arthritis and secondary chronic fatigue syndrome from pushing myself too far for too many years. The rehab doctor who headed the team that evaluated my fatigue said it was unlikely it could ever improve at all, and said he would rather tell me, "You have cancer and this will end soon," but unfortunately, it looked like I would live a long time and be miserable most of it. He said the best way to explain to family and friends what it's like to be me is to ask them to remember that time they had the flu with a high fever and they ached so badly that they thought they would rather be dead than to have to get out of bed - and tell them that's how I feel on my good days. The team apologized for forcing me to exhaust my energy but put me on machines to determine exactly how much strength and energy I actually had to work with. The determination was that I had the equivalent of four hours of energy a day. If I used eight hours one day, it might be a week or two before I recovered. And I might end up on the floor unable to move. That happened a few times.
Eventually, I learned to manage those four hours so well that the doctors asked me to write a book and help others. I didn't do that. Fiction was more fun.
The big question for our society is what we want to do with people like me? I devoted a huge portion of my four hours of energy to doing everything I possibly could to protect people who needed it most - and my four hours a day was much more than most healthy people give. I fought for same sex marriage even though I have no interest in women. I fought for unions, and unemployment, and minimum wage increases even though I never had a union job and will never have a job again. I fought for ACA even though I had Medicare. I continued to fight for Planned Parenthood and reproductive rights even when I was post menopausal, for schools when my kids were adults . . .
Most of the disabled people I know are like me. We want to feel vital and needed, and we want to contribute to the world. And it is nice when we are appreciated for our contributions, even if our wisdom and experience are all we have left to give.
Unfortunately, it appears that our society is learning toward rewarding people who stalk people like me, telling us to hurry up and die (and in the case of Sanders and supporters, calling us ugly names and threatening violence if we don't get out of their way), and following that up with electing people who want to take away our healthcare, housing and food assistance, and social security.
One step deeper into the heartless pit, instead of offering us a Dr. Kevorkian option, they want us to stick around for painful deaths without medications.
There is nothing great about a society that turns its back on and even mocks people who hurt for any reason.
I few blocks into the drive home, I felt extremely weak. I figured it was from the amount of blood they had drawn and decided it would be safer if I stopped to eat something and let the weakness pass. I drove to what had been my favorite deli for a bowl of soup only to discover it was gone. Went on a few more blocks to my favorite salad place and there were no parking spaces. So, I came home, called Briana to cry on her shoulder and she brought me a black and bleu salad that I usually love.
But it tasted horrible this time. Almost like the metallic sound.
It was hours before serious pain and weirdness set in. This time, I called Jessica to cry on her shoulder. Really to see if I sounded strange to her because I thought I might be having a stroke. She said I didn't sound slurred but I did sound scared and that wasn't like me, so she wanted me to call an ambulance.
I spent a week in intensive care with a subarachnoid hemorrhage of unknown etiology. After two cerebral arteriograms, they were certain it was not a stroke but still didn't know what caused the bleed. Weeks later, a post swelling and bleeding scan showed scar tissue consistent with the healing of a ruptured aneurysm.
I feel extremely lucky to have survived this with no residuals that doctors can see, although I know small ways in which I haven't fully recovered.
Before this incident, I had already been determined totally and permanently disabled with juvenile rheumatoid arthritis and secondary chronic fatigue syndrome from pushing myself too far for too many years. The rehab doctor who headed the team that evaluated my fatigue said it was unlikely it could ever improve at all, and said he would rather tell me, "You have cancer and this will end soon," but unfortunately, it looked like I would live a long time and be miserable most of it. He said the best way to explain to family and friends what it's like to be me is to ask them to remember that time they had the flu with a high fever and they ached so badly that they thought they would rather be dead than to have to get out of bed - and tell them that's how I feel on my good days. The team apologized for forcing me to exhaust my energy but put me on machines to determine exactly how much strength and energy I actually had to work with. The determination was that I had the equivalent of four hours of energy a day. If I used eight hours one day, it might be a week or two before I recovered. And I might end up on the floor unable to move. That happened a few times.
Eventually, I learned to manage those four hours so well that the doctors asked me to write a book and help others. I didn't do that. Fiction was more fun.
The big question for our society is what we want to do with people like me? I devoted a huge portion of my four hours of energy to doing everything I possibly could to protect people who needed it most - and my four hours a day was much more than most healthy people give. I fought for same sex marriage even though I have no interest in women. I fought for unions, and unemployment, and minimum wage increases even though I never had a union job and will never have a job again. I fought for ACA even though I had Medicare. I continued to fight for Planned Parenthood and reproductive rights even when I was post menopausal, for schools when my kids were adults . . .
Most of the disabled people I know are like me. We want to feel vital and needed, and we want to contribute to the world. And it is nice when we are appreciated for our contributions, even if our wisdom and experience are all we have left to give.
Unfortunately, it appears that our society is learning toward rewarding people who stalk people like me, telling us to hurry up and die (and in the case of Sanders and supporters, calling us ugly names and threatening violence if we don't get out of their way), and following that up with electing people who want to take away our healthcare, housing and food assistance, and social security.
One step deeper into the heartless pit, instead of offering us a Dr. Kevorkian option, they want us to stick around for painful deaths without medications.
There is nothing great about a society that turns its back on and even mocks people who hurt for any reason.
