I have to say, as I prep for/engage in two job interviews for positions this week, I also have this little voice inside which says:
“What’s the point? You’re doomed.”
Well, it’s not quite that dramatic but that’s essentially its core messaging.
Why?
If you’re a new reader, I received the death toll of genetic testing when they found I not only have the chromosome associated with ALS/FTD, it also repeated (that’s bad) 145 times.
“Huh. They hand-wrote that number in the results here. The lab doesn’t usually write that number down… huh.”
– lovely genetic counselor who was trying to ethically and kindly communicate the really shitty results
Why did the lab write down the number of repeats?
Because it was a crazy high number they don’t usually see.
Aces.
Soooooooooooo whatever. Life goes on. I don’t feel like I have ALS or FTD, and I’m doing daily brain exercises which truly seem to help and… I’m prepping for job interviews.
I’d also kind of assumed I’d be spared a terrible degenerative disease because I already had epilepsy.
I had intended to create a Microsoft Paint illustration which portrayed epilepsy and FTD/ALS and other diseases being competitors in a race with epilepsy crashing through the mortal finish line first, saying:
“I will be the one to kill her first you sons of bitches… meeeeeeeee!”
I just don’t want to deal with my PC laptop from a former time today.
In any case, there is no logic to the thought that I already have one life-threatening neurological disorder so I shouldn’t be eligible to get another.
It’s not a logical kind of thought. Rather, it’s hope.
That bastard.
In reality, one person can have everything.
So, this year, while watching the news to see if/when America’s democracy crumbles into anarchic ruin, and while preparing for interviews, I’m also scheduling new labs/tests, including tests for MS.
I was also talked into seeing a neurological specialist who focuses on presymptomatic people like me.
Or so I thought.
However, when I was called to make that appointment, I was asked whether:
* I have a wheelchair. And this was in addition to the “Do you require any special accommodations?” question.
* I have a caregiver.
Okay. Yikes. Those questions didn’t make me think I was seeing someone who specialized in presymptomatic people.
And then I saw the confirmation of this appointment and my heart fell into the bottom of my guts.
Soooooooooooooooo that was a trip.
I’ve never met this doctor and, as far as I know, I haven’t been diagnosed with ALS.
So, in the meantime, my eyes are on the prize.
I want a dog and a yard. Thus, I’m going to do what I can to get one of these jobs I’m interviewing for so that can happen.
I’m also going to keep working on the rebranding of my graphic memoir if only to share my small life with others.
So, if ALS kicks in, I hope to be in my new house, with my dog and my framed degrees and scholarships hung on the wall and a pile of my old art books and copies of my two graphic memoir books on a coffee table nearby.
All my stuff.
Because that’s what I’ve managed to accomplish in this life.
A pathetic little way to say “I WAS HERE.”
Of course, after death/the ability to move on our own, we live on in the hearts of those who love us but…
I wouldn’t probably want to see anyone if I’m drooling and unable to move.
I’d probably forget everyone anyways.
It would be best for everyone to part ways.
Naturally, nothing is determined.
I could easily be shot inside our apartment because Milwaukee has a problem with that kind of thing.
And, besides, all of this is largely academic.
I’m not showing symptoms yet. I am struggling to keep up at times but, these days, who isn’t.
Also, I’m hard wired to defy the odds when it comes to bodily matters.
Last year, one unhinged neurologist told me I’d die in my sleep soon because no body could sustain the apparently large amount of electricity that is being produced by my brain.
And no one seems interested in finding a way for me to solve the world’s energy shortage.
In any case, I’m not dead yet.
And potentially on the cusp of being gainfully employed.
Life is quite a thing. 🖤
Brain Wars!!! 
I might have one of those Monty Python “NOT DEAD YET” buttons kicking around the house; I think it would be perfect for you.
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I want a dog and a yard for you too! Also, after my carotid artery findings, they kept giving me folders and information on strokes and I was like “I thought you said I DIDN’T have a stroke?” And they were all “Yeah, totally. Here’s another folder on strokes and the doctor you’ll see is a stroke specialist.” To which the only logical reply I can have is “If I had a stroke you need to tell me. Did I have a stroke?!” “No, but here’s a bunch more info on strokes!” Not reassuring. Fucking ALS.
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Oh Hillarie!! This is crazy! Love how you’ve written this😍but that’s so hard 😩you never know how it will play out I guess. We have to live for the present and in hope but still this is hard! Hope you get the job😊Are you still in touch with Margaret hills?! Sending loads of love xx
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Hello dear Hannah! Ohhhh you were one of my favorite “students”. You essentially took care of me when I did that guest lecture… twice! You’re so right… living for the present is difficult with COVID and all this looming but doing my best. We can’t know what the future brings so it’s essential to focus on what we do know and that’s… happening now. 🙂 I really enjoy working on my book; it’s really coming together! I wish I could just work on that as I can feel it helping me to further process all that has happened in the past…twenty years. 😛 BUT MONEY MONEY MONEY MONEY MONEY! 😀 See Cabaret song. Haha I… haven’t been in touch with Margaret… we are “linkedin”… but I do try to avoid LinkedIn. It stresses me out… ALL THOSE PEOPLE WITH JOBS!!!!!!!! AAAAAUGH!!! 😂 Hugs and love to you… hope you and yours are staying safe during this crazy time. xxx
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It’s so much better sometimes it seems to just not know what our medical providers think of us or how they classify us.
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You are so right, dear Gabi. 😘 It’s terrifying when they’re HONEST. I mean, after all, they’re just people too. I’d rather have the data and then get multiple perspectives on its analysis rather than depend on just one person’s perspective.
Of course, it was a little unsettling to hear how I was one male neurologist’s “Favorite patient.” 😬 He always told me that. And this wasn’t even the crazy one I had last year… you’re just so right. JUST KEEP IT TO YOURSELF, DOCTORS.
It’s funny when doctors decide to tell you what other doctors chose NOT to tell you because… you become fully conscious of how doctors really hold some serious control over your information.
I’m very aware of this because I won two class action lawsuits last year due to settlements between health data corporations and all the people whose health information they illegally/improperly used.
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You are one of the fiercest bitches I’ve ever read! I hope you get that job and a nice new place to live and then a fur baby. Maybe those assholes that wrote “ALS long established” on your testing form can get you a free medical assistance dog who can alert somebody when you’re having a seizure? (or bring you a beer). I’m rooting for ya.
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Awwww thanks Naomi! Haha… yes yes yes yes. Today’s interview went really well… I was leading it by its end which means I’m in good form. 😂 (it is a leadership position).
Hoping that my not-diagnosis won’t inhibit the state from hiring me but… it was so great to feel more “like me” in this interview which gives me hope that how I’m feeling has less to do with the non-diagnoses and more to do with… my lack of purpose.
So FINGERS CROSSED! The overachiever was PRESENT this morning!!!
Ohhhhhhhh I should have really played that card with our landlord who doesn’t allow pets. “I’m AN EPILEPTIC. I NEED this dog!” It’s simply dangerous to go outside here soooooooo… being ethical.
But hopefully soon!!! Thanks for the support!!!! Having a dog, a yard and a meaningfully job where I’m helping people succeed… could solve so many problems right now. 🙏🤞😭🥰🖤
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