Adjusting to Multiple Sclerosis & Forming Meaningful Relationships in College
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.
Less than a year after my June diagnosis, I had another MS attack. I was on my way back to Baltimore from Spring Break in Miami and on the plane it became evident that I was in trouble. It didn’t take much to feel (or see) what was going wrong. Most frightening was the jumping vision that was like the horizontal hold on a TV that needs adjustment. (Does anyone understand that reference anymore?) But the weakness, tingling sensations and difficulty walking didn’t help either. Imagine navigating through an airport alone when everything in your field of vision was in constant motion. Come to think of it, that makes for a great reality show that highlights survivors who make it through death-defying MS scenarios that are otherwise insignificant.
Next stop: a new neurologist who put me on oral steroids with hopes to shorten the “flare-up.” And with that, I got on another plane to return to Miami. I needed my mommy to take care of me. ;)
Before I left, I sat with my professors who were very understanding and wanted to know more about this MS thing. And while I had learned the biology of what was going on ala the brochure, I couldn’t tell them more. I was scared blank-less of my unknown future - how was I supposed to explain this confusion to them? I needed someone to explain it to me! So the sympathetic faculty exempted me from Film History II and a few other classes. While this was a supportive gesture on the their part, I continue to suffer from that loss as to this day, I’m much less familiar with the films of Felini and Truffaut than I want to be! (Just can’t seem to watch those films without an assignment and the promise of the following discussion/explanation!)
When I returned to school a few weeks later, my new friends had questions and concerns. Some of them ultimately couldn’t deal with my uncertainty and they quickly became "unavailable." Others were un-phased and they turned out to be the keepers. In retrospect I can now see that MS served as a convenient filter. I would talk my talk and those who could deal stuck around, while those who couldn’t, didn’t.
This was a bitter pill to swallow that at the time felt more like a hard punch to the gut. Feeling alone and miserable under the circumstances was an easy default. But as with anything in life, hindsight is very convenient. And it’s easy to pull out the positives from any scenario when using the narrated glance at the past with a pinch of rationalization. (I prefer Morgan Freeman for that role.) But taking these explorations can be very helpful when searching for new ways to cope with MS. Rewriting these challenging times from a less emotional, wiser place is helpful on many levels. (Of course Facebook is helpful for this type of healing too!) But when it comes down to it, I like to be the master editor of my own revisionist history!
Over the years, dating and meeting new people found me in similar situations with new characters. (I had a new opportunity at this social gauntlet when I graduated and moved to Miami.) Meet a guy, decide whether you like him in spite of his many failings (and if I did date you in Miami, please recognize this as revisionist history), figure out when to break the news and be prepared of the painful smack as the door closed behind me. Filter deployed.
Ultimately, we all need friends who don’t only hang out in fair weather. And having this tool to separate the keepers from the losers is ultimately a good thing. It certainly was helpful when I met my now husband. I told him in our first date and he was nonplussed. (And on the second date when he said that he loves to hear me talk, I immediately cleared my date book for the rest of my life.) Frankly, “in sickness and in health,” should be the parameter for any meaningful relationship. It is good to know how your friends would handle this life reality before the big commitments are made. When the letters M and S first leave your lips, it is the ultimate test for any relationship. They should have a blood test for this, but since they don’t...the MS litmus test is the next best thing.