I'm watching Family Guy on Hulu right now. In the episode the guys are texting. Joe texts a video of a guy in a wheelchair going up a ramp real fast, doing a backflip, and landing it. I looked at my chair, which is a powerchair, and thought, "There's no way this could do it. This thing's too heavy. Then I realized what the situation I'm in is. I'm in a wheelchair because I can't walk. I'm 38 years old and have been in a wheelchair for 2 years now.
I'm 38 and in a wheelchair.
I have Myotonic Muscular Dystrophy type 1. Within 3-4 years I won't be able to walk at all in any capacity. My body is deteriorating. Not just my body, but my cognitive faculties as well.
I didn't get in a car accident and break both my legs. This isn't temporary. I'll never get out of this chair. Some people may think that it's nice that I have something to carry me around. I would trade them this chair for the ability to walk in a heartbeat. 3 steps and I pass out. Too much exertion.
I never saw my life coming to this end. I never in a million years would have seen myself being confined to a wheelchair by the time I was in my mid 30's.
MMD type 1 is a terminal disease. It has taken years off my life. Obviously I don't know how many. I've discussed it with Adrianne. If it comes earlier than expected, she will come here and make a post to let everyone know.
I hate this life that I'm forced to live. I can't take care of myself fully. I have to have help. Adrianne went on a cruise with her parents a few years ago, and she had some family of ours (friends that are now family) come over every day to check on me. I was in my 30's and had to have a babysitter. I'm a full grown adult, and had a babysitter. You have no idea how humiliating that was. I felt like an invalid. Like I was being told that I could never last if I didn't have someone here. My egg donor was back in here reminding me how worthless and useless I am. I heard that all day every day. My sperm donor was back beating me. I was defeated. I still am. I'm not a person. Even the federal government says so. I'm a nonperson. I just got the news before most people.
I just want a little dignity. But that's not going to happen.