Darras Law Scholarship: December 26, 2019
Keep S’myelin
My heart sank into my stomach, my burning chest ached, breathing was restricted, and everything inside my head began to spin. At ten years old, tears filled my eyes as my mother’s shaky voice explained the chronic disease that had been destroying her insides for 23 years. I shook my head in denial, looking at my young mother, with so much life ahead of her and pregnant with my sister, unable to understand how someone so young could be so sick. This was the single most influential woman in my life and the person in this world I could one hundred percent count on to be there for me. At such a heartbreaking time and moment, I suddenly had no idea how to be there for her. June 5th, 2009, was the day my mom found out she had to battle multiple sclerosis the rest of her life. It was the day I truly learned how resilient my mother was to every wall, small or large, thrown down in front of her.
It’s a funny question I’m asked: How did your family cope? How did they manage to find the right recipe to manage this disease? I don’t know if any of us ever did. My brother and I knew that mom would need more help around the house and that she would have more doctor appointments to go to than most moms. She was the center of both our worlds and though our 10 and 7-year-old minds didn’t quite understand what MS was, we knew mom would have pain for the rest of her life. It broke us, absolutely crushed us. We cried often at first, struggling to understand why the most giving and incredible woman we knew ended up with such a terribly relentless disease. In the end, we moved forward because we all had to. We faced the reality that the disease wasn’t going to disappear. So for once, when mom was struggling to be strong herself, we helped to be strong for her. To this day, I don’t think I ever learned how to cope with it, holding an immense amount of my emotions in. To cope, I’ve educated myself and my family in any way I can, finding ways that I can help make this disease less like living in hell. Amazingly, out of all five of my family members, my mom—the one fighting, is the one I’ve seen be the strongest through it all. If anyone has taught my family how to cope, it’s her.
The biggest concern my family and I face on a daily basis is the fact that people simply do not understand this bipolar disease. When the general public (or even family members) hear the words chronic disease, they see a wheelchair and a person who should not be able to get out of bed. They do not see the good days where she can run errands without a cane vs the bad days where getting out of bed and making her way down the stairs is only possible with the use of furniture. No one sees the endless scars of this invisible disease so they simply see a smile on her face and believe “she can’t be that bad” or “maybe she doesn’t even have ms”.
It’s not understood that despite her efforts to stay active and keep moving, this is a disease that won’t go away and she won’t get better. Once myelin is damaged, there’s no going back. The most helpful thing I found to help with research funding and support services is something that is so terribly hard to find— understanding with no judgment. No judgment passed regarding why one day my mom doesn’t need an electric chair at my cross country meets, while other days, she does. It’s been an emotional toll on my mom and her stubborn personality to not be believed. Understanding and further education would provide more awareness and decrease ignorant comments of “you look good” and “you can’t be that bad”.
Furthermore, education through magazines such as the ones the National MS Society ProgramNational MS Society Program puts out, can be the most influential. The “Keep S’myelin” kids’ resource was something I used myself. It broke down scary terms into things I could understand at 10 years old. For the first time, I was able to know why my mom was in pain on a daily basis and why she was losing abilities she once had. Education through resources such as these not only help those affected by MS, but help others acknowledge the immense complexity that comes with this disease; that no two people battling MS are the same, that those battling need help and support, and that funding is needed to not only find a cure but to help cure the damage already caused to the myelin.
So is there a recipe for managing this disease? It’s not going to stop. The war isn’t going to end any time soon. If I’ve learned anything from watching my mom battle MS, is that you just have to keep pushing and fighting. If you are battling MS, you are not and never are alone. No matter how much this disease tries to take from you, this disease cannot and will not define you. Above all, ignore the judgment and the ignorant comments, never letting them consume you. There will always be people who will never understand what you’re going through, but there are so many fighters and supporters willing to listen to your battle. You are not MS and you are so much more than a diagnosis. You are a fighter, like my mom, living life the best you can through this battle. It’s admirable, every fighter, what you all go through. Keep S’myelin.
By: Hope Saucier
