I have this need to make it seem like I’m not sick, even though I am.
I got the letter in the mail this week from our long-term disability company once again stating I am completely disabled. It says something along the lines of me not being able to do any sort of job. At all. Of course this made me feel like dirt so I threw myself into finals. You know, finals…because I decided being entirely disabled and incapable of any sort of job, I would try to go back to school. Because that makes sense.
I also thought that because it was online and only part-time I would skip telling Michigan State University that I was disabled, because I wouldn’t need their services.
A few weeks into classes I suffered my first flare. A few more months my second. And at the end of the semester I had a bout with MRSA. For those who don’t know that’s a rather deadly staph infection that tends to kill people like me on a fairly regular basis.
I had home health care daily, a PICC line in my right upper arm, and IV antibiotics on a pump that I got to carry around in what I can only call a fanny pack. I managed to keep up fairly well with my Anthropology class. It was a two credit course so the reading wasn’t too intensive and I had time to work through the many quizzes.
My history class was another story. Each Thursday I had a paper due and our final was, essentially, a very large paper worth 30% of our grade. Both Professors graded on a curve and for awhile I was leading the pack. Two flares and one infection that required a nurse at my home daily later…and I found myself slipping. I could keep up with the reading. But the writing while drugged and with an IV pumping in my arm became more than difficult. And I knew the rules, there are no extensions and late assignments are not tolerated. For any reason. So I didn’t bother to even ask for extensions.
This was my own doing and I thought I would just keep doing my best. Finals are now done and grades will be posted in a few days. I think I’m a high C low B in Anthro…but I’m not even sure I passed History. In order to have passed I would need a flawless final and for the rest of the class to have bombed. I have to admit, I worked my ass off on the final. Going back to notes from the beginning of the semester. Meeting and exceeding every requirement. Or so I thought. But if a glimpse of what I’m seeing in my online forums is right, I may be taking this class over again. Which frankly makes me want to cry.
I tried so hard. I KNEW the material. But I was too proud and stubborn to tell the University I was disabled and therefor could need extensions on assignments if, say, MRSA hit me and I had an IV in my arm for 12 days. Of course I have more than enough doctor’s notes and, hell, even pictures of me with the PICC line in my arm. But I couldn’t even email my professor and tell him because I knew the rules and I felt I should be treated like the rest of the students.
Now I’m worried about my GPA that will sink and upset I didn’t register with the University’s disability department…or whatever it’s called.
The thing is…I still believe I’m going back to work. I still believe I’m getting off these steroids and will look like myself very, very soon. I still believe that everything will be normal again. It’s now been nearly three years since my first surgery and I still believe everything will be like it was or at least close to what it was or even BETTER than what it was and very, very soon.
I’m tired of IV infusions. I’m tired of taking pill after pill. I’m tired of buying plus sized clothing. I’m tired of this ‘new normal’ that includes me needing to tell MSU I’m disabled. I don’t want to tell ANYONE I’m disabled because in my mind it’s temporary and fleeting. It will be OVER SOON. I’m just so sick of waiting for ‘soon.’
Soon has turned into years and I don’t like this life of being disabled. For many reasons that don’t even include the state of my body. I’m doing all I can to keep myself busy and to keep myself feeling as though I’m contributing to life in general. I do what I can for the kids Monday-Friday…but Saturday and Sunday my husband picks up all the slack. Which basically means he does everything.
I had hoped school, even if only part time, would lift my spirits and give me direction. Instead it’s giving me a constant reminder I’m not 19 and I’m certainly not healthy. I can’t really go out and do much. But I have faith this will be over soon. I’m going to get well enough to do all the things I want and then some.
I realize I have been saying that for years now, but I believe it. I HAVE TO BELIEVE IT. I want this over with.
For the good of everyone around me it has to be over with soon. It just has to.