This has been difficult to write because it is often hard to put into words what one cannot yet explain.
MS or Multiple Sclerosis is scary like any other disease but having been told you have MS at the age of 34 is fucking terrifying. Let’s not mention the fact that my mom had three small children at that age.
As a child I didn’t understand how dreadful the situation was, but as an adult I understand now. Her world changed and as a result, so did ours. I knew two things at the time, 1. My mom was sick and not like a cold you can get better from, but actually terribly sick, 2. I was scared. She began to have symptoms while we were on a family vacation and it wasn’t until we came back that she found out.
The irony of the situation is that we went to nine different neurologists and she was misdiagnosed several times. She was told she had Muscular Dystrophy, Lupus, Lou Gehrigs before her actual correct diagnosis of MS.
MS is tricky, it’s painful, it’s a silent monster but the worst thing is that it creeps up on you. My mom went from walking, to using a cane, then a walker and eventually a wheelchair all within a few years at most. It changed everything about her and us; our family was different. What no one tells you when a family member gets sick is that everyone else does too. We weren’t physically sick but we were emotionally exhausted. MS was a monster and it was ravenous for my mother.
We spent lots of time in hospitals; she spent a lot of time trying new innovative medications to help “pause” her illness from progressing. Nothing seemed to work; the ones that did work were just too expensive to afford. What do you do when as a child you see your mother slip away? She became a shell of herself and there wasn’t much we could do in the process.
MS made her cruel and it was tough to deal with a “mean” mommy. As a result we grew apart. I couldn’t relate to her; I presume her pain was to much to bare at times. I acted out, I rebelled. I was angry, hurt, and confused. I hated MS and didn’t understand why my mom had to get sick. I still feel this way.
My mom passed away from complications of her MS; she was 45. There isn’t a day I don’t think about her and wish she was still here with me. I always do my very best to donate to the Multiple Sclerosis Society, participate in the MS walks and stay informed with the research and milestones they continue to achieve. It helps me feel connected to her. I want other people to know they are not alone. I want to continue to fight for her…
This post is for her, Martha. I love you.