Today is the last day of MS Awareness Week. As many of you know, multiple sclerosis is an issue close to my heart because my mother fought the disease for almost 30 years before passing away in April 2008. The purpose of MS Awareness Week is to educate the public abut the impact of this debilitating disease and to encourage all of us to take a stand against MS by making a donation, volunteering our time, and/or sharing our experiences.
Watching my mother battle MS was the most difficult experience of my life. I watched her go from a cane to a walker to a wheelchair to being bedridden during the last 31 months of her life. There were many times when I had to leave the room so that she wouldn’t see or hear me crying when she told me that she could no longer read the side of a cake mix box. Watching your “she-ro” slowly lose control of her body took my mind, heart, and faith in many different directions.
There was the guilt. One time I came home from college and realized that I left my keys in Chambana. As I knocked on the door, I remember thinking “Is she sleeping? What’s going on?” When she opened the door, I looked down and saw her on the ground. Turns out that she’d pulled herself across the floor from her bedroom to the front door because she had to let her daughter in the house. GUILT. I cried silently for hours in my pillow because I felt so terrible.
Or there was the time when I came home to find out that my mother had been sitting on the floor for over a day because she’d fallen out of her wheelchair while reaching for something and her caregiver had the day off. I mean, as a young person living the life in college, I began questioning myself as a daughter. How can I be away at school living it up and my mother was at home dealing with these things? I thought about transferring to the Chicago campus to be closer to her, but she refused. “No. You stay down there and finish… in Champaign.”
That selflessness and sacrifice is what I think of every single day when I remember my mother and when I think of every parent battling multiple sclerosis. It takes an immense amount of sacrifice to turn your children loose into the world when you know that you could use their assistance at home.
Throughout her fight, my mother remained selfless and giving. Smiling when she preferred to cry. Encouraging us when her hope was gone. Even in her passing, there was an element of giving. She gave my sister and I the “freedom” to pursue our dreams. She empowered us to take her legacy and story and use it to change our lives and the world.
When I volunteer at the MS Society, I love meeting parents with MS who have young children. I love looking at them and telling them that although it will be difficult, it’s not impossible. My mother did it. They will do it. And, their children will love them even more for it. After all, those of us affected by multiple sclerosis are warriors. We fight every single day as this disease continues on its destructive path. But, we will never give up. Not now…Not never…Not until there’s a cure.