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People are evidently fascinated by my story, and have a morbid curiosity for
my terrible prognosis. They want to know what it’s like, living with this day
to day, and knowing that my life will be over soon. Well, it’s actually kind
of boring. Since I don’t have the freedom to move around where I want to, and
everything I do need to accomplish has to be planned out in advance, I mostly
just repeat the same routine every day. I wake up at 07:15. For now, I can
brush my teeth on my own, because my arm tremors don’t prevent me from doing
it, especially not so early in the morning. It gets to be problematic later in
the day, when my arm starts to kind of flail about more unpredictably. I guess
the prions need time to wake up too. Anyway, after I take my first round of
medicine, Kelly helps me with some physical therapy exercises for about an
hour. After that, I need a break, so she plants me in front of the TV for
maybe a couple of hours. At that point, I’m getting hungry, so she makes me
something simple for lunch, usually a sandwich or a wrap, along with fruit and
vegetables. I’ve never eaten so healthily, but that was always my problem,
having to be inconvenienced by preparing the food myself. I’ve never cared
that much about the taste or quality, it was always just easier eating
something prepackaged, or delivered right to my door. That’s probably the best
thing about having an assistant, be it a medical professional, or no. Then
after lunch, Kelly takes me for a walk in the wheelchair, or if she’s being a
big meany, the walker. I’m joking, I know that it’s good for me to stay active
and mobile. There will come a day when even sitting in a wheelchair will feel
like too much. The walk takes as long as I can handle it, because I’ve always
needed a nap right after it, and in some cases, during. She usually has
to wake me up to take more pills, and then I just stay awake for more TV, more
physical therapy, dinner, more pills, and more recently, writing these posts.
Finally, it’s time for bed. That’s pretty much it. Exciting, I know. It’s so
interesting, in fact, I think I’ll start a vlog about it, so a company can
offer to sponsor me, then get mad when things don’t work out (probably because
I’ll be dead). So. You’ve all been writing me letters, and that’s a very
lovely thought, but I’m not going to tell you where I live, I do
not have a publicist, because it’s a waste of money at this point, and
the jail shouldn’t be worrying about them. They have enough on their plate.
Here’s the deal, if you send more letters addressed to me, they have been
instructed to literally throw them away. They’re not even gonna open them. So
please, stop killing trees for no reason. If you want to say something to me,
you can send a quick message below, or catch me on social. I still might not
be able to read them, though, because it’s getting harder and harder for me to
keep my eyes open in front of screens. And my lifecare assistant isn’t getting
paid for all that extra stuff. Thank you for understanding. Goodbye.
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