Monday, March 4, 2013

My Diagnosiversary

My brother's birthday is Wednesday so I took Mom out card shopping. On the way home we were discussing how it would only take one day to reach him and let's see, what's today? March 4th? It won't be a problem.

"WAIT! March 4th? Really? Do you know it's been 14 years today since I was diagnosed with ms?" (I refuse to give it the power that capital letters infer). That's a long time. It's six months less than my teenager's life span. It's nearly half of my 30-year-old's life. It's elderly in dog years. It's over a quarter of my own life.

Then, as if it were a gift to me, I saw a post on Facebook where a friend who also has ms had shared this video:

I put the headphones on and gave it a listen. To my surprise I had tears streaming down my face. 

The tears at first were for sorrow at the loss of a life free of ms. Then they were from shame that I should cry when so many are suffering so much more from this disease.

I am truly blessed that I have found a treatment that has worked so well for me in Gilenya. I was led, almost pushed, down a path made by fate which brought me from darkness and despair, on the verge of suicide, into a light that now shines on everything. It's the light of Hope, the light of Time Bought. Being relapse-free this long has let me catch my breath. It's let me feel like I'm a part of my life again and not just watching it pass me by.

If not for my despair back then, I don't know if I could have had the courage to join the clinical trial. I would have let my hypochondria and fear prevent me from believing anything good could come from it. Perhaps I should be thankful that my ms was impacting my quality of life to such a degree that I didn't care if the trial killed me -- I was already contemplating death as a viable option.

Slowly, over these many years since starting the trial, I have let go of the constant fear of an impending relapse. Like a big shoe that hovers over my bug-like self, waiting to squash me flat, render me helpless. That's what ms is. The monster shoe we all try to escape. 

As if Kharma said "Look, about the ms thing, I'm sorry. Here, have this opportunity," I am now a patient advocate and have the honor of traveling the country, sharing my Gilenya experience and my passion for Hope with other ms patients. Everyone needs inspiration in life. I feel this is my calling. Nothing, NOTHING compares to a hug from someone who says "you touched my heart with your story." That's what it's all about. Connecting.

Got off on a tangent there...back to the video, which is what the post was originally about. Well, that and my diagnosiversary.

I noticed all the beautiful women in the video who have chosen to get tattoos "honoring" the disease. I have pondered the idea before. I have no tattoos, but this is something I have come very close to considering.

In the end I have come to the conclusion that I have given all of myself that I am going to give to ms. I fight it every day not to rob me of anything else. It has already scarred my brain and spinal cord, robbed me of so much time I could have spent involved in my children's lives rather than just watching them grow up. No way am I going to suffer more pain in the name of ms or let it scar my skin as well.

Besides, when the day comes that there is a cure, I don't want anything left to remind me of what I left in the rearview mirror.

This is ms awareness month. Go learn something, or share something, or donate something in the name of stamping out this dreadful disease. 

Do it so we can all quit marking our diagnosiversary and one day say "THIS IS MY CUREVERSARY!"

Now, THAT would be something to celebrate. :)



2 comments:

  1. For some reason, my school computer allowed me to log in and read your post this morning--I bet it was so I could tell you how much I admire your journey. I, too, am tattoo-free (so far--I am contemplating a tiny trefoil in the notch where my thumb and forefinger meet...), and your rationale for not marking your disease is a wonderful tribute to your own, whole self. Love and blessings, sweet girl.

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  2. I agree with you about the tattoo...ms has done enough to me, I dont need to be reminded of it anymore. You are brave to do a clinical trial...I thought about it years and years ago

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