Comment by Mezzie
2 years ago
Also it's absurdly difficult to be an academic with a chronic disability, speaking as someone with a chronic disability (MS) who was diagnosed in grad school and who left the sector because of it.
Moving multiple times, as is usually necessary during the post-doc years, means moving away from your support system and interrupting your continuity of medical care. Your activities of daily living require more time: You can't spend 12+ hours a day in a lab if you need to sleep for 12 hours a day. You aren't usually paid enough to pay for all the little extras that make life easier as a disabled person: No delivery services, no supplements, no helpful but extra costing medical services like massages/PT/etc. And stress usually worsens your prognosis: Academia's reliance on competition and stressing out post-docs combined with stress being associated with relapses was one thing that made me nope out. I'm not risking my ability to walk for your institution's prestige.
I have MS and am in grad school. It is very hard.
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.
3 replies →