Put this day in the record books! The writing muse actually hit me BEFORE I was already in bed and half asleep tonight, so I’m actually here to put my thoughts to paper. I have thoughts nearly every night, but I’m never awake enough to type them out. I’m excited; are you? I’m still beating the ticking clock until my meds kick in and knock me out, so I’m not not going to ramble on, but I’m truly excited to post.
I have health issues. Just as a clinician came out and said that it really does look like it’s mitochondrial disease, which is a progressive, ultimately terminal condition, another clinician whose opinion is equally valid came out and said that she’s not positive… that my issues may be a cruel combination of 23 years of type I diabetes combined with a handful of other, seemingly unrelated issues. At this point, what I deal with is a lack of gut motility that affects my GI tract from one end to the other. I am fed by a GJ tube. On Wednesday, I’m having surgery to remove my colon (which is nonfunctional) and place an ileostomy as well as a J tube. So, I’ll have a G tube, J tube, ostomy, insulin pump, and port. I’m in the process of getting fitted for a custom wheelchair, because my muscle pain, spasming, and weakness are getting in the way of me participating in things with my family as I’d like to. I have generalized autonomic dysfunction, which affects not only my digestion but my bladder as well as my blood pressure, heart rate, and temperature stability. I get migraines, often weekly, and I usually sleep 18 hours a day.
There’s the autism, too, which I refuse to include in the same paragraph as my medical issues because I don’t view it as something broken or defective but rather a part of a whole person– me. I am who I am because I have autism. I am made in God’s image. My autism is nothing something to be fought against but something that allows me a unique way to experience the world and then relate those experiences with others. We cannot choose our neurologies… if we could, I would still choose the one God gave me.
That’s really just an obligatory autism disclosure that no post should go without, even though it’s not directly related to my point. I include it because some people see fit to include my autism in a list of reasons why I should be pitied. My life is “small,” I’ve heard. I’m “too young to deal with all of this,” “too young to live in a nursing home.” They “feel so sorry” for me.
Here’s a secret: I feel sorry for the people who pity me, because, apparently, their notions of what life is about are so narrow that they are unable to look at the person I am and the way I interact with the world and see that I live every day to the full.
I notice it more during the holidays, but I do see it year round. I watch people drag and drudge. They drudge through their shopping. They drudge through their holiday meals. They drudge through their errands and their family time and their jobs. Me? I can’t say that I spend more than a few minutes on any given day mindlessly drudging through anything. I am fully engaged as I am at the post office, as I decide in which order I will eat my animal crackers, as I pet my kitties and turn 26 and greet my mom.
I’m nearly halfway to my Master’s of Fine Arts, and I just earned another 4.00. I have a book contract. I get to speak to groups about autism and travel to conferences. I live out much of my life from behind my computer screen, but that works very well for me. I have two kitties and get to be auntie to the cutest baby in the world and really, what does the location of my bed have anything to do with negating all the amazing reasons to be joyful each day?
There is good and bad to nearly every situation. There are always trade offs. In my case, a nursing home and an ostomy and two feeding tubes and all my darn “lines” as a I call them (the medical tubing that connects me to my pumps and such) may not be my first choice, but since they are my only choice, I never really stop to consider any of the alternatives. I did “lose” anything, because the reality of which you speak never existed. There is this reality, and I intend to celebrate every moment of it.
Now, just stop drudging long enough to join me!