I try not to complain too much about my body not working. First of all, I think it’s pretty obvious that this sucks so it doesn’t really need to be said. Second of all, I don’t think about it all that much. One of my roommates asked me the other day if I ever just want to stay in bed all day because my body makes my life pretty hard. After thinking about it for a second, I realized that the answer is no. I sat in bed for a year and a half, and it sucked. I went through hell so that I could have my life back. At the time, I didn’t realize that the life I was fighting for would be so different from the one I had before. But it is what it is, and all I can do is make the best of it.
All of this said, there are definitely days that I am too sick to function. For this reason, I have accommodations from Stanford’s Office of Accessible Education. My accommodations are pretty basic – extensions when I need them, being excused from class for doctor’s appointments or illness, etc. For the most part, my professors have been very understanding. There is a department, though, that really seems to believe that students with disabilities should just give up on their lives. Chemistry.
There are 9 labs in my organic chemistry class. I made it to labs 1-7 and missed lab 8 due to a freaking transfusion reaction to IVIG. I was literally shaking, my kidneys were freaking out, I obviously could not go to chemistry lab. I emailed the professor and she told me that the lab would have to count as a zero, dropping my grade about 5%. I responded that there was no way for me to make it to the lab and this is why I have OAE accommodations. She responded that she was “starting to become uncomfortable with being able to say that you actually completed enough of the course.” To clarify, I completed 7/9 PSETs and 8/9 labs. I also took both midterms and will obviously take the final. She is uncomfortable. Sorry prof – I’m uncomfortable every second of my life.
I’m still responsible for every bit of the material I miss. I go to tutoring and office hours and study like crazy. I have been on the average for the course all quarter. She wants me to talk to my advisor. I will never be in a situation where I can attend 100% of a class. That is why I have accommodations. That doesn’t mean I don’t have to learn the material – it just sometimes has to be done in a different way. In the rest of the email, she basically told me to drop out of school.
I have never been so offended in my life. Not just for myself, but for every disabled student who comes in contact with the chemistry department. Obviously, I will escalate this situation. But I shouldn’t have to fight about it. I don’t want to. I just want to sit down and resolve the issue.
Sharing something like this is uncomfortable for me, because I don’t like to complain or throw people under the bus. But I’ve encountered several situations like this and I can’t be silent about it anymore. I am disgusted.
In other news, I have one week left until I leave to do cancer research this summer at Memorial Sloan-Kettering in New York City. God forbid I miss a single day of the internship, because clearly that means I should just give up on my entire life and sit in a room all day.
If you care about my health – I got my tear ducts plugged and it has been L I F E C H A N G I N G. I went from not being able to open my left eye (see below) to feeling almost normal! Also, this means that I can’t cry at all, which is fine because I don’t emote and couldn’t cry before anyway.
^check the cute closed eye
^me being normal with two open eyes.
The GVHD is resolving in my skin and gut as well. I gained two pounds! Killing the game. I’m on 30 mg of prednisone every other day and 10 mg on the off days. As much as I hate prednisone, I’m not ready to taper because it really is helping. At the same time, I’ve gone back to being awake all night and being useless until mid-afternoon, which sucks. I have finally convinced my doctors to let me try some newer immune-suppressive drugs (ruxolitinib) and I’m hopeful that this will help me get off the prednisone. In the mean time, I’ll keep living my life even when professors tell me to give up on all of my life goals.