It
started with a
stumble here or there. It was no big deal. I wasn’t the most
graceful child anyway.
Slurring my words - that was a big deal.
Of course there was one doctor. One doctor led to another, and yet another They couldn’t tell me what was wrong. Did I have a slight stroke in my sleep? Was it lupus? Maybe it was lime disease No, no and no.
Three doctors didn’t know what was wrong. The fourth doctor, Dr. Louis Pearlstein, he knew.
"Wendy," he said. "You have multiple sclerosis."
I looked at him as if he were talking to someone else. There had to be another Wendy sitting in the office. He wasn’t talking to me. He couldn’t be.
I don’t remember much about that day or that conversation. While the doctor talked I felt like I was in a Charlie Brown cartoon listening to the teacher, "Wah, wah, wah, wah, wah." Sure, I heard every word he said, but I definitely didn’t understand a single one of them.
I do remember feeling empty and alone. It’s a feeling that came to visit and never left. That day, my entire world collapsed around me. From my limited knowledge of the disease, I knew was destined to become a prisoner in my own body. I was going to become the object of everyone’s sorrow. Though I had their love, I would also have their pity. I didn't want to be pitied.
Multiple sclerosis. Those are two very powerful words. Say them out loud. See, they don’t hold any power when you say them. Their power comes the minute you’re diagnosed. Almost like cancer or HIV. Those are powerful words, too.
That was four years ago and hundreds of doctor’s appointments later. Turns out I was the Wendy the doctor was talking to that day. Fortunately, I'm not the Wendy that left the doctor's office. That Wendy didn't have any fight in her.
I really don’t know when this feeling came over me. One day I woke up tired of feeling alone and depressed. I knew that there were people out there who were feeling the same things. I wasn’t alone, and I didn’t want anyone else thinking they were too. We’re all on a different, unique journey with MS, but all-in-all, we‘re still in this together.
Don’t get me wrong. I‘m not living in a dream world. I have days where the pain is more than I can take. I have the type of MS that they call "relapsing remitting". From what I’ve been told, the last MRI shows no new lesions, that’s what they call ‘remission’. If some MRI says that I’m in remission for the time being, why doesn’t it feel that way? Everyday that I feel as though I am not in remission seems to take me further and further away from it. Sometimes I want to quit fighting. I want to stop taking my medicines and die. I have those days, but I try not to stay in that frame of mind.
At 39, I’ll never be the woman I was when I was 32 or 30. As the disease progresses, I'm realizing that some days won’t be as good as others. For that fact, some weeks won’t be either. And I don’t think long-term anymore. It’s not because I’m afraid to die. Sometimes I think it’s because I’m afraid to live.
My personal crusade and the love of my husband are the source of my strength. I know there may not be a cure for this disease in my lifetime, but I refuse to give up hope. Even if they don’t find a cure while I’m alive, it’s what I do while I’m here that matters.
I want to make a difference and I plan to. Right now I talk about the disease that has wiped away my dreams of having a relatively normal life. I talk to anyone and everyone who will listen.
As I mentioned before, my husband Ed is also a great source of strength. I fight for him when I can’t fight for myself. And because he loves me so much, he fights for me when I can’t do it for either of us. His love is unconditional. And through his love, I’ve finally realized that I don’t have to be strong all of the time. When I feel myself spiraling out of control, he's always there to catch me when my world stops spinning.
My journey is taking me on a long, winding road. Some days I can walk it alone. Some days I have to have help. There’s no shame in asking for help.
So let me tell you, find something positive you can hold on to. So much about this disease controls us, and we’re at its every whim. Find something you can control, whether it’s your actions or your attitude. Don’t let this disease take everything from you. Surround yourself with positive people and laugh as much as you can.
When you have times you’re feeling alone, remember you’re not. I’m here. I’m Wendy..
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