my little secret

A couple of weeks ago, Jason caught me looking at a discussion board for people impacted by ADEM.

"Are you still holding out for that?" he asked me.

ADEM (Acute Disseminated Encephalomyelitis) was the original diagnosis of my illness. It wasn't until an MRI eight months later showing new lesions, that things changed to MS (despite the possibility of recurrent ADEM). Through my internet searches, I have learned that recurrent ADEM should be treated as "special case MS". Or something like that...don't quote me.

The point is, I guess that I do still hold-out for some magical moment when I will be told that I never had MS. But I'm not sure why I hold onto this dream. My life wouldn't be any different than it is now. MS or ADEM, the treatment is the same in a recurrent case. My brain wouldn't heal any differently.

I would still be taking disease modifying drugs. I would still be tired and fatigued. I would still have all the same residual symptoms. I would still have this numbness on the front of my right ribs, that when I lay down and breathe, it feels like someone is tickling me.

Whichever disease it is, I consider myself lucky to not have had to battle come-and-go symptoms prior to the diagnosis. There are a lot of stories about how people came to be diagnosed with MS. In some cases, years of puzzling symptoms either went unchecked, or wrongly diagnosed.

So why do I hold onto this dream? I know what you're thinking...because I don't want to have an unpredictable, potentially debilitating, progressive disease. But I don't think that way. I don't sit here wallowing in thoughts of what might happen to me.

I read the ADEM discussion forum, because my experience has been most like the experiences I see there. When I do come across someone sharing pieces of their MS experience that are similar to mine...I am overwhelmed...I've been known to cry. But they seem to be so few and far between.

Now in "real life", life outside these four walls, I have MS. I'm not afraid or ashamed to say it. I live with MS. I try to keep up on the latest drug info and trials. I want to raise awareness. But every once in awhile, I find myself peeking behind the other curtain.

Which brings me to another bit...

Jason and I were out for dinner with some friends the other night. Our server was someone who a few of us had worked with at the BB. So as you do with old acquaintances, she asked what we are all doing now...

I answered, "I'm on long term disability".

For the first time, that came out of my mouth instead of, "Nothing".

Either answer is awkward.

Next time, I might try, "I'm taking a break". Or, "I'm in between careers". Or better yet, I'll take a note from the Seinfeld television series. In one episode, George pretends to be an architect (no wait, he tried this in more than one episode), a career he wishes that he had. When asked if he designed any famous buildings, George responds that he built the Guggenheim...
I may be way off on the specifics, but you get what I'm saying...

So when someone says to me, "What are you doing these days?", I will respond,

"I invented Youtube."
or
"Are you familiar with Citibank commercials, What's in your wallet? I wrote that"
or
"I wrote the new Hockey Night in Canada theme song."

Ciao!

Emily