Friday, June 18, 2010

Let's Take It Back to the Start

Taking it back to the start doesn't imply when had my first symptom or even when I was diagnosed. I knew about MS and all of its ugliness way before I experienced my first symptom.

When I was (a chubby, sarcastic, bratty little) 10 year old, my mother went blind in her left eye. Totally unexplained. It lasted for a few weeks and subsided on its own. She was 35 - 3 years older than I am now. I was scared and didn't really understand what or why it was happening and I think that pretty much sums up how the rest of the family was feeling, too. For the next 10 years there was a list of symptoms - numbness, tingling, trouble walking (sometimes with a cane) that would come and go, locking our family into an involuntarily roller coaster ride. We never knew where that ride would take us. Her neurologist (who had a comb-over ala Gene Wilder in Willy Wonka, so let's just call him Dr. Wonka) took his sweet time getting to a diagnosis.

Finally, ten years later, she was diagnosed by a spinal tap. I was 20. I didn't really understand the disease and quite honestly I resented the whole thing. Not my mother - just the absolute lack of control, not to mention the complete open-endedness of it all. No surgery or drugs could correct it. It's a disease with no cure.

At the time I was playing in a band called Pohgoh. A band that changed my life - gave me confidence, camaraderie, and memories that I will always keep close to my heart (oh and a drummer that, 4 years later I married - 10 years ago this August!). We put out an album and a couple of 7-inches. One of the songs I'd written made it to a 7-inch that we put out. The B-side is a song called "Bernadette" - my mother's confirmation name. It expressed my frustration and selfishness about MS and how it was changing her right in front of my eyes.

Within a year I would start to experience transient symptoms here and there that were easy to dismiss because they didn't last long. MS was the last thing on my mind. Seriously.

Jump to August of 2000. Three days before my wedding, in fact. My mom and I were driving to pick up my dress and all of a sudden there were two of everything - my right eye couldn't stay looking ahead, it kept rolling to the left. We chalked it up to stress, so I pulled over and my mom drove. Too bad it was way more than that. It lasted up to and all through my wedding and honeymoon - and three months after (Just to clarify, I didn't look like a googly-eyed doll, it was only when I was trying to look ahead). Went to see Dr. Wonka. He did an MRI of my brain and an eye test (called an Evoked Potential) and diagnosed me with a "sixth nerve palsy". Which basically meant I had a mini stroke in my eye. Why did I have it? What caused it? No explanation was given.

Here's where I screwed up: the double vision subsided and I was feeling good so I took his diagnosis, packed it up in the "worry/unknown" box and locked it away. I should've gotten a second opinion. Big mistake.


I have to stop again for a moment and tell you how perfect Keith was through all of this- he made little patches out of black construction paper to put inside my glasses and sunglasses so we could go about our lives as "normally" as possible. We joked about his wife, the pirate. And all of my friends went with it too - if they were concerned, they did a good job of masking it. In our first year of marriage, we had to deal with a lot and he was right by my side at all of my doctor appointments. He was the voice of reason and perspective when a new unexplained symptom would pop up and I was freaking out (cause, let's be blunt: girlfriend is neurotic). He just rolled with it and so many others would have walked away. The divorce rate for couples with MS as an unwelcomed member in their bed is pretty high. I'm so lucky. That boy must really love me.

So from fall of 2000 to the following fall of 2001 I had a few more symptoms come and go - my legs got numb, my hands got numb (to the point where I couldn't hold a guitar pick), if I'd bend my head and look down I'd get this weird, creepy electric shock feeling going down my spine... more mounting evidence that I couldn't dismiss. Then something happened that I absolutely couldn't ignore.

On the morning of September 11, 2001 when the whole country was in a panic, I was working in the HR department of a call center. No reps came in until the afternoon so we just had a small admin staff getting ready for the day. Well once the news broke we put the radio on the PA system and went to a training room to watch the day unfold. I remember racing to that room and getting so angry with myself because my left leg was completely unresponsive - I was just dragging dead weight, trying to get there as fast as I could. Something was very, very wrong.

About a month later it was time for a second opinion. I went to see another neurologist - this time, I had MRIs on my brain and my spine (remember: Dr. Wonka only did one on my brain). On October 26th I went back for my follow up after the test. But first I had to pick up my films to take to the doctor. So I picked them up, sat in my car for a minute and looked through the giant envelope. I couldn't see anything on the MRIs, I didn't know what to look for. Then I read the radiologist's report: "consistent with Multiple Sclerosis". That warranted a freak out. I called Keith. He left work and joined me at the doctor's office.

Everyone at Keith's office dressed up for Halloween. And since it was the Friday before - Keith went in to work dress in a nun's habit and robe (complete with his red beard sticking out). So he was racing to the doctor's office and realized he'd better change. If we'd been filming a movie that would have been a black comedy moment for sure. Me getting diagnosed with my husband in a habit.

We went home and I cried for a little bit. Keith cried too - and I knew he must have been devastated because he. never. cries. Then we decided to get out of the house to get our minds off of it. I just remember thinking all afternoon - will I be always be able to walk this far? up these stairs? will I be in a wheelchair? when?

I really had no idea what I was in for.

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