My school of circumstance was University of Maryland, though considering my diagnosis was smack in the middle of those years, it might as well have been the U of D.* Trying to decide when to disclose my MS was a constant challenge. I truly wanted everyone around me to know what I struggled with and I wasn’t shy about talking about it in spite of the fact that it terrified me. Though, when it comes down to it, talking has always been my therapy of choice.
When living with MS, your life becomes a game of who to tell what and when. And there are so many things that come to the table when one is confronted with these decisions. Not everyone is ready for the tell-all-expose that I use daily. As we know there are many versions of MS and just as many different types of people living with this pu-pu platter disease. (Does anyone get that reference anymore?) So when it comes to personal relationships and the decision to disclose, you have to go with your gut, which to my knowledge, isn’t compromised in any variation of MS!
When I was diagnosed in June of 1988, I was entering my junior year of film school and had just transferred to a smaller campus (UMBC) where I would begin in September. I hadn’t connected in a meaningful way with the film program at the College Park campus or the campus’ 37K undergraduate population. Hard to believe, I hadn’t found anyone I could feel good to be around. Maybe I needed 38K to find the right people. So instead of waiting for a larger enrollment, I went to Baltimore to see if their selection was any better. Over that summer on a visit home to New Jersey, I woke up numb and tingly. In less than a week I was diagnosed with MS. Then back to Baltimore where I didn’t yet know anyone and I had to fend for myself. (For more diagnostic detail, click here for my blog essay on that very subject.)
There I was with a new place to live, a new job in a new town and now a new disease. I was starting from scratch on every level. So I purchased an air conditioner to combat the heat that I recently learned wasn’t good for me and I struggled with disclosure with every new person I met.
I’m the kind of person who is most comfortable when everyone in the room knows what I’m dealing with, whether they care or not. My new label filled me with anxiety and confusion as to who I was; meeting new people exaggerated my state of the state. Of course with my “new” everything I was in a constant state of meeting people. After all, that was the point of searching for new community which by definition requires meeting new people. Granted, I made this decision before my diagnosis and had no idea I would be dealing with this “little” identity issue.
Once my semester began, things got a little easier in spite of the frightening question marks. I had a number of immediate missions to distract me: register for class, buy books, get to know my four new roomies, get a futon, assemble it and of course make friends. Once again I found myself back in the unsure-ness of rooms filled with people who didn’t get me. But I didn’t get me either, so I continued to make it up as I went. It can be scary to disclose that you have MS when you don’t know what it means for your future, for the year - heck, for the following day. And when you live in a town with no family and strangers who are possibly going to be your friends for life, navigation is a tricky thing. But I kept moving ahead on my mission of friend-finding. I told everyone who would listen and hoped to meet someone that wouldn’t recoil at my uncertainty. But I’m sure my own apprehension was evident in my awkward delivery and this was an added deterrent in hunting for a BFF. Hey, do you have Dan for Intro to Filmmaking? I have Multiple Sclerosis. What about Film History? I was desperately looking to find a comfortable place and as the semester progressed I did find a few candidates who might make that happen.
