When I returned to college a little over four years ago, I was aware of a few things: I might be putting myself into debt (possibly serious debt) for degrees that I may never use because my health would never improve enough to return to work; my doctors and I may have found that right combination of medication, exercise, and diet that would allow me to at least work in the field part time; and with everything I had gone through the previous 6+ years (well, honestly, my life until that point, but mostly since I had to leave the workforce), I knew I wanted to help others who were chronically ill.
Almost all doctors look at the physical self. How do they make that feel better? How to fix it? If it can't be fixed, as is the case sometimes, but rather at least controlled, how do you give the patient a comfortable "quality of life?" Even the specialists I have now, as amazing as they are, are more concerned with my symptoms, the diseases, the labs--the inner, physical workings. What gets lost is just how life changing something like this can be. I had a career. I had a life. Then all of that drastically changed in just a few short months.
I have yet to find a psychiatrist (misdiagnoses there aside as well) to understand, or psychologists to understand. I found one, but I realized the reason she understood was because she herself was sick--she had to leave the practice on permanent medical leave after about 12 weeks. In her place, I saw a young woman whose solution to everything was to take at least 90 minutes a day to myself and tell everyone not just how I'm feeling, but how they're making me feel and what I think about it. (All of my doctors laughed at that one.)
Community College went well. The school and my professors--all but one or two who eventually came around--worked with me and I graduated with an extremely high GPA and 2 AA degrees, honor society, and I had at least accomplished one goal. When transfer time came to finish my Bachelor's Degree, I was playing on a whole different field and the game had changed. I was forced to withdraw from entire semesters before the administration would allow me to finish at least one class if the professor would allow it; I learned that after a decade I did not have fibromyalgia and chronic Lyme Disease, but 2 autoimmune diseases that were by then pretty bad as far as out of control and wreaking havoc on my joints and surrounding tissues forcing a medical leave; and became the lab rat for the school.
Four year schools have disability offices to help students with disabilities receive the accommodations they need and help them navigate through any problems. Essentially, these offices become the advocates for and with the students. My school, however, has no idea how to help me. Autoimmune, or "invisible" illnesses are just not something they've ever dealt with before. Physical and learning disabilities are easy. There are policies and protocols for those. There are policies and protocols for everything: absences, time off, leave, withdrawals. Everything is very black and white, wrapped up in neat little packages. Which would be great, if say, I was in a wheelchair, needed crutches, or had a severe learning disability. Or had to take time off for a severe injury or something (the maximum time allowed for leave is 1 year--I'll get to that gem in a moment). I fall into that grey area and the school has admitted that I'm the first case they have had that they do not know how to handle. I have had to take time off to adjust to treatment, get my symptoms under control (almost there, but not quite yet), but I know that, just like before, there will be flares--times when I simply will not be able to make it to class because of pain and swelling. And there are policies against that both by professors and the school that punish students for that. If there were online classes offered, that would be awesome, but there aren't. It's too small of a school. And to transfer to a larger school, I'd get lost in the shuffle (not to mention the whole strong immunosuppressant, sitting in a classroom with 75+ other student thing--not good).
So here's where I am now: I was told that my leave time is up. I have to either register for classes next semester, when I'm physically not ready to return and seriously risk screwing up another semester and/or my GPA (a rocking 3.9), or withdraw from the school entirely and have to go through the application process all over again--which should be interesting, considering after all of the fighting, discrimination, and threats of lawsuits on my behalf, I don't know what my odds would be about returning. Ever. Or to another school, since I do have credits completed, and schools talk. I'm 3 semesters from graduation and whether I get to work in the field or not, it is a goal of mine to finish it, but to do it half assed isn't the way (re: return and tank my GPA). Or walk away now (risk closing that door), return to community, pursue an AS in chemistry (an old goal/love of mine and I'd still be going to school, making sure my brain doesn't atrophy), then hope to return to finish my BA. I just don't know. I find it grossly unfair that it is bad enough to be punished with a body that has turned against me, but to be punished by institutions for it out of ignorance makes me feel like more of an outcast. I'm not being paid for what I do. I'm paying them. I'm not asking for preferential treatment, or pity, or anything extra. I just didn't think asking to extend leave, or to be able to do the work (such as showing up/missing class) within the limits of what my body can handle was too much. Especially when I have proven for over 3 years that even when I am not in the classroom, my comprehension of the material far exceeds that of what is expected.
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