Comment by Mezzie
2 years ago
I was 'lucky' in that I had my first relapse in the last semester of my Master's program, so I could limp along and finish the degree and decide not to pursue a PhD. An academic career was right out, especially as a first-generation student.
I decided to go to gradschool after the big relapse took me down. I’m going to do this in spite of MS. Fuck MS. My MS has hit me in both eyes and ruined my old career (I was a pilot).
Anyway, I’m going to push myself to build new neurons faster than it bashes the old ones. I’m learning Spanish, do some programming for school every day, and walk a lot. It helps - even if my vision is pretty bad I feel it really helps.
I did 2 years of Tysabri and then switched to Lemtrada in January. One more dose of that and then theoretically I’m done. Going backpacking this summer in Spain as a big “fuck you” to MS. I’m slowed down quite a bit but not beaten. I will get better or die trying.
It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
My old career is over (hard to fly if you can’t see well), the new one is going to be software engineering/ AI stuff in spite of this shit.
Whatever you do don’t give up. MS is a cruel bitch, but I plan on outlasting this asshole. We’re not far from a real restorative cure.
> It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it. In my case, I'm a librarian/archivist who's likely to be one of the last people living with a memory of the beginning Web + some of its predecessors (I'm female and from a family with multiple supercentenarians - I have a fair shot at making it to the Web's 100th anniversary) and I think that the training and first-hand knowledge to sort through and add context to what we have from those eras (especially pre IA and Google) is going to be very important but also that interest isn't going to really pick up for another ~30-40 years, so my third responsibility is to live a life that maximizes my odds of living and functioning into my 80s+. First is my own wellbeing and second being that of my family/people.
My diagnosis also completely shattered my worldview and I've had to rebuild my values and morals from the ground up and it turns out that a lot of the goals I used to have are odious to me now.
> on outlasting this asshole
Spite = best motivator.
> Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I don’t quite have the emotional regulatory weirdness but my ability to deal with bullshit, pettiness, or any of that minor sort of tyranny cruel people try to impose is basically non-existent now? I don’t know if that’s the result of immense emotional, spiritual, and personal growth, or if MS clipped the wire that allowed me to ignore bullies? I don’t know but I’m definitely a lot more radical now. What’s weird is I cry a lot more now, and I never used to before, really? It’s ok, it’s good to cry - but I had some toxic masculinity perhaps that MS beat out of me lol.
Also, do you use Anki? I have found that actively practicing with Anki and one of those stupid brain games apps has really helped me build back some of my memory skills. The one thing I routinely forget now is people’s names? But I figure I’d rather have 1000 Spanish words than remember the name of the mailman like I used to. My apologies to, Randy was it? It’s weird, I can remember just fine to write code, I can still do math - the main impediment in school has just been visual… but why the hell can’t I remember names anymore lol? Maybe I just can’t be bothered to give a damn except about people who are important to me?
> I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
Man, mine were great. The first time ON just wiped out one eye, but they couldn’t figure out what happened or if it was MS… well they figured it out 4 years later when it took out the other one. I had even gotten a waiver and was back to flying with one eye for a few years. I was fully blind for a bit after the second relapse. Was pretty terrible, but way better than some poor folks. I at least can still move etc. and my eyes have been improving for a couple years, albeit slowly, but now, while I cannot drive (let alone fly) I’ve got enough vision to go back to school.
> I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it.
Dude are you my girl twin? This is basically why I went back to school. Losing my job wiped out a massive part of my identity - I’d been a professional pilot since I was 19 and had literally not seen any other thing that I wanted to do. Basically I had to completely reinvent and recreate who I was through all this. Anyway, the big epiphany for me was major changes in how I view the world - particularly with regards to what is important and where I fit into it. I am not going to go down without a fight even if my only purpose is to serve as an example to others.
I was a workaholic. I still like to work but my motivations and the reasons I go are much different now. My wife makes enough to support our family now, albeit not as comfortably as before, but good enough. When I finish grad school the money I make from whatever I do will be able to be spent on fun, experiences with the kids, and helping in our community - that’s a massive change from where we were before, basically just focused survival or getting more money for money’s sake and toys.
Getting sick was like crossing an event horizon for me in terms of personality. I remember who/what I was, but there is no going back and I couldn’t see myself today back then. I am fully a different person now. The essence may be the same, but I am irrevocably changed. That’s ok - I wouldn’t trade my life for someone else’s, but man, MS is a bastard.
We got this shit.
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