MS Diagnosis and Other Conversation Starters
When you are living with MS your diagnosis story is the “where were you when” exchange that differentiates the generations. Where were you: when a man landed on the moon, when Kennedy was shot, when John Lennon was shot, and when Kurt Cobain shot himself! Come to think of it... it’s mostly about who was shot. So for the MS question it might be, Where did you get your first shot?
There is something about that story that started it all. The one we all discuss when we meet each other, in person or online. We all have different versions of this disease and though we may have gotten the report at varied points in our experience, each of us heard the words- “You have MS” and with that new label, our stories began.
I’ve been living with MS since 1988 when I was a 20-year-old college student. I was going through a tragic time in my life. My mom left my dad and moved to Florida, dividing and immobilizing my nuclear family. By the time I was diagnosed I didn’t have much in the way of a support system to lean on, so I needed to learn and cope with it on my own.
I was diagnosed out of nowhere. I had not had a single symptom prior to the ones I brought to the doctor’s office that June day. When what started as tingling increased to include double vision, I was told to check into the hospital for tests and out again for an MRI. In one week I went from “I woke up with a numb tingly feeling” to “You have Multiple Sclerosis.” It was the whiplash that still has me massaging my neck in disbelief. How did I get through that time?
Back in the late 80s the MS community couldn’t have been more different. Without the Internet there were few ways to get information. My assigned neurologist told me not to get heated, or stressed out because those things make it worse. Are you serious? That’s like saying no blinking or inhaling- it will make it worse. And you walk out batting your eyes and breathing like Darth Vader. Don’t get stressed out. Are you kidding me? You just gave me my diagnosis on the first day of summer and I can’t get heated? From that point on just feeling warm temperatures gets me stressed out.
You have a disease that is completely unpredictable and you’ll either be fine or you won’t be able to walk, move, be free of pain, see, feel your limbs or control your bladder.... but chillax, you might be okay.
As I returned to college the next morning, I forged ahead in my forced independence. Trying to take command of a situation I had no control over was a huge challenge. Who was I, now that I had these two letters before my name? Ms. Amy Gurowitz no longer seemed like an independent woman who won’t be identified by her marital status. MS was all over me. MS Amy MS Gurowitz MS. Just as I was learning who I am, setting forth on my college journey away from home, I was labeled with an incurable unpredictable disease.
And I quickly learned that the uncertainty would be the hardest thing to cope with. Thinking back to that time, I wish I could have had a glimpse at the person I am 21+ years later. It would have been very reassuring. That said, living a life with this disease has strengthened my character. I’ve noticed it in other people I’ve met in the MS community. It’s a strength of perseverance that has grown in me just because I am living through whatever this disease hands me. I exchange knowing glances with my MS peers that confirm we live on the same planet, and know how to breathe the air there, and here.