Newly Diagnosed MS

(Actually, I’m cheating a bit… this is also in the ABOUT section… but just in case you don’t go there…)

My name is Andrea.

I’ve been where you are. I’ve been diagnosed. So hang with me a bit. Because what you’re about to read might help you not feel quite so scared. Trust me on this.

Wow. Those first days are the worst. Multiple Sclerosis. How do you even wrap your mind around that?

Just hearing the words for the first time — being recently diagnosed with those words — were horrifying. All I could think about was how I would soon be in a wheelchair… my worst nightmare. My friend told me that there were support groups. So I dutifully went. But that was the wrong thing to do. Even she said that was the wrong thing to do. Why? Because most everyone I met was in a wheelchair. I listened to the speaker — about how the ABC drugs were successful in this many cases, yet they didn’t really know why. Then I went outside and burst into tears. That’s when a man came up and told me, “Honey, it ain’t all that bad. We make do with what we have. In fact, my wife and me were riding down the road the other day and she couldn’t pee — she had to pee real bad — but we didn’t have a catheter, so I just pulled over to the side of the road and whipped out a bic ball point pen and that did the trick. It’s really not a bad disease once you get the hang of it.”

Well, I didn’t want to get the hang of it. I didn’t want to be in a wheelchair. And I sure didn’t want to deal with bic pens, redneck and catheters.

And I didn’t want M.S.

But I had it.

I’d been living in America for only about six months, going to college (I’m from Germany), starting my new life, excited to be in America. Then one day I woke up practically blind in one eye. After a few days of not telling anyone, I finally told me friend and she made me go to the eye doctor. I came back two hours later, already diagnosed with M.S. My friend was livid. “How can he tell you that just by looking at your eyes? The guy’s nuts! I’m calling him right away.” And she did. And he explained that since I was a Northern European, and I had Optic Neuritis (the reason I’d lost most of my sight in that eye), pretty much stamped me with the mark of MS. My friend settled down, but we were in a neurologist’s office that afternoon (in retrospect, how she did that is beyond me — they aren’t so easy to get in touch with).

After many tests at many different famed MS centers (my friend doesn’t give up easily) — the enormously expensive MRI — showing, yes, scars on my brain; the not-very-pleasant lumbar puncture (spinal tap) — showing, yes, oligoclonal banding in my spinal fluid — I was given a firm diagnosis.

And you know what? Now I realize how really lucky I was to get that diagnosis so fast. At the time, it might have been my worst nightmare. But now I know that there are tons of people out there who are trying so hard to get the diagnosis so that they can get on the ABC drugs. So, in that sense, I was lucky.

And here’s where else I was lucky. Ready? I got M.S. Multiple Sclerosis became one of my greatest gifts in life.

After at least four terrifyingly depressing months, I finally began to come out of the clouds; and when I did, I realized that I could be active, instead of reactive. Instead of waiting for the next M.S. time bomb to go off (that’s exactly what it feels like!), I could do things to prepare for and prevent other attacks. Instead of being curled up in a ball, I took my friend’s suggestion and developed a Worry Hour every night. I wasn’t allowed to do anything except live until that hour, and then I could cry and kick and scream and rant and rave for that entire hour if I wanted. And I did. After a couple of months of doing that, it begins to get boring. Reacting can be boring. Taking charge and acting on things can be powerful.

And that’s why M.S. became a gift to me. It taught me how to take charge of my life. And how to live no matter what was waiting ahead in the future. When my arms would tingle or my legs would get numb and lose sensation — and even when I never completely got back my sensation — I didn’t give into the negative. I just kept my head up and I kept on going. And I’ve continued to keep going for the last five years.

And I’ve never been in a wheelchair. I might have to be in one, but now if I have to, I’ll sit in that wheelchair and ride around in circles and take my pup with me, and let my Goddaughter wheel me around, and I’ll be the same person I am right now, only stronger. Maybe not physically stronger at that time, but spiritually and emotionally, I’ll be Hercules.

I can finally take care of myself and not be that scared child I’ve always been all my life. And it’s because of M.S. that I was able to get to this place of strength.

And that’s exactly why you shouldn’t be scared. You won’t believe it right now, but you’ll see. M.S. will cause problems for you, of course. But M.S. will teach you how to really take advantage of being alive. M.S. will teach you how to love life. And if that’s not a true gift, then I don’t know what is.

————–
A word of thanks to Biogen, the makers of Avonex. And, nope, they don’t support me or this site… but they make the drug that has kept the negative parts of M.S. at bay, and allowed me to live the positive parts. So, thanks, Biogen.