The Disease That Takes

I have been fighting the clock. It is twofold really, I have fought the preverbal biological clock for many years now, but the other one is much more sinister. It is the clock of Multiple Sclerosis.

I was young when I found out my mother had MS, roughly 12 years old. I was also immature and not really able to fully realize the gravity of this disease and how it would slowly take away one function after another. You see, MS affects the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Currently, there is no cure for this disease.

My mother was only 37 when she lost vision in her left eye, then her walking started to become cumbersome where she would need a walking cane. I remember being a selfish teenager annoyed as to why my mom had trouble driving at night and would limit her driving to only driving during the day. When she lost vision in her second eye, I remember being hurt because she would rarely call me when I was away at college. Year after year another function would leave or become hindered. Prior to my wedding day I was upset because she was not there with me while I shopped for a wedding dress alone. At my wedding, she could barely walk but refused to use her walker, fueled by pride,  as she walked down the aisle as the mother of the bride.

My adolescent ignorance prohibited me to fully understand my displaced anger. I was mad at my mother when all of this time I should have been angry at this horrible disease. I talk often about how I was robbed of the ability to bare a child. Yet, my mother has had her life stolen from her. She is now in a wheel chair and often struggles with memory. I desperately raced the clock to have a child so that she would have a chance to meet her grandchild before MS would once again strike and take another function. I had the weight of guilt from my youth along with my infertility fueling the pressure of providing a grandchild for her.

She may not be able to physically see Jellybean and she cannot change her diaper or read her a bedtime story, but when she holds my daughter the look in her eyes and the smile on her face lets me know that MS hasn’t taken everything yet. There are few fleeting moments now and then when I see my mom again, the one before MS came into our lives. When she is with her, I see the woman she used to be. It really just makes me angrier. I know that my mother would have been there in my youth. She would have called me when I was away at college. She would have been the first person at the bridal shop and she would have been the first in line to change a diaper. MS is a disease that just takes. I can only hope that with more education and awareness we can find a cure. This week, March 2-8^th is Multiple Sclerosis Awareness Week . Take some time to learn more and support those whose lives are slowly taken away from this debilitating disease.

Chris-

I don’t have MS so I cannot speak on how it feels. All I can do is imagine. Like many professions, I use that gray matter between my ears quite a bit in my work and know that the idea of being plagued by something like MS, or Alzheimer’s or dementia for that matter, is something that truly shakes me to the core. I just kind of envision it as being stuffed inside a sewage access on a street that you don’t know and having your only solace be the light from the manhole cover. Only some nefarious entity is up on the street, with full freedom to do whatever they want, and they are slowly pushing that manhole cover irreversibly over the light. It is terrifying to think about and must be unimaginably more difficult to live.

I never knew Candace’s mom before she was diagnosed with MS. I have known her for long enough to see what the disease has done to her, see the changes in her demeanor, activity, and cognition, with the luxury of not having seen those changes in comparison to the lady before she was diagnosed. Although there is no cure, at the moment, and it is difficult to get her to do things that could better herself, I do take great joy and solace on the occasion that we are able to do little things for her that bring her happiness, or at least distract her from what must be a ferocious inner war. She loves seafood, hates snow, listens to the 24 hour news channels (I said listens because she effectively cannot see the television, only hear it), and likes to be taken to the mall for incredibly specific things. When Candace and I are able to have blue crabs with her, when I am able to talk with her about a weather prediction for flurries, or when she is updating us on what crazy thing is going on in some unknown corner of the world, at least in that moment, it seems that she is able to let down some of her necessity-driven defenses and just be a person-having a conversation or being involved in an activity with other people-and I hope she can be at peace in that moment. However brief it may be.

I don’t have MS. I haven’t lost the faculties that we all take for granted, never to regain them. I have watched how it has affected Candace’s mother and those around her and hope that, in some small way, a week of awareness can bring the cure that much closer. Here is to never having the need for another MS Awareness Week!

If you are interested in spreading awareness about MS, here is how you can help:

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Visit these links below to find out ways you can help support and raise awareness!

http://www.nationalmssociety.org/Get-Involved/Raise-Awareness

http://www.nationalmssociety.org/Get-Involved