I don’t talk about this topic very much. Even though I knew the answer to this question before science decided to say MS may be hereditary. I’ll never forget the year I started reading that “studies show” MS could be hereditary, because everything I had read before said there isn’t research that claims MS is hereditary. Unfortunately that was one of my biggest fights with my doctor before my diagnosis. Arguing a doctor and their science is a hard lesson I learned. A lesson I try to inform you and others. DO NOT WASTE TIME DISAGREEING WITH A DOCTOR. No one knows your body better than you. The doctors had me thinking I was crazy. No, I’m serious I really thought I was crazy because everything I said was going on and what I “knew” was going on, I was told MS is not hereditary! “…so, how did you know, you ask???”
For one and a half years I tried to get diagnosed. I have briefly danced around the topic in some of my previous blogs but I asked for permission first. 8 years prior to my diagnosis, I worked from home at the time and received a phone call from my very own mother. She was chipper, confident, but I knew she was about to tell me something, maybe a death in the family, or maybe bad news about one of my friends I grew up with. In my mind, my mother was a hero with super strength and at times super powers. For her to tell me Sissy, I have been diagnosed with MS. ——-WHAT, what did you just say??? My whole world as I knew it started warming up at the same time my world was slowing down as she explained to me how she came to find out. All I could think about was Richard Pryor. That’s all I knew about Multiple Sclerosis at the time.
Now I don’t know about you but just the words Multiple and Sclerosis together sounded like death in a bottle to me not realizing that in parallel, it can be…. (what I call the black hole) can’t tell you how many times I’ve told my husband that I feel like I’m trapped in a bottle with a lid on tight. You do feel trapped in your own body with no escape. If only we could unzip ourselves and step outside just for a breather would be great, just an out, just a release.
I mean everything else in my life I could relate to gets a break. As an athlete you can call timeout, at work you get a lunch, part-time you get breaks. When traveling a great distance you stop, stretch your legs use the restroom, even during shows or long presentations you get intermission. When giving birth to my first child I remember looking at my mother saying, the contractions wouldn’t be so bad if only I had a longer break in between to catch my breath but at least I got a small break, with multiple sclerosis, we may get less pain today but extreme fatigue. We may walk better tomorrow but stay confused for the most part. We never get a break. But I wonder if you all realize that’s a benefit. That makes you amazing, that makes you strong that makes you someone else’s hero. So be mindful of the way you complain be mindful of your doubts be mindful of who’s watching because my mother taught me strength in that phone call. She was not crying in that call, she was not upset, she told me how she was going to handle this Beast, and she is doing just that! She doesn’t complain about what her body is going through. Though she’s not as vocal and open about her MS as I am, she is a huge part of the way I look at fighting the Beast. Her and my husband are the only ones who have seen or heard me cry over the Beast. I guess she’s my personal support group. Even though she still doesn’t complain, she’ll cry with me when I need it.
I even had that hard talk with her shortly after my diagnosis, making sure she didn’t blame herself for my MS She assured me that she didn’t but I can hear it in her tears. She teaches me how to swallow the pain. But I’ve had to learn how to let go, be rid of, or regurgitate what I swallow. My suggestion is to find ways to do the same. For me I stay in The Word, I have to because if I didn’t, I would be angry and I would be cursing MS. I go to church because at church I see other people’s struggles and somehow that helps me support them and get through my own. And for some reason writing this blog, creating a nonprofit organization that I never dreamed I would ever do, and answering your questions helps me get through it at all as well! The more I engage with the MS community, the more cases I find where multiple sclerosis is hereditary so study MS, learn it, learn how to diagnose it. Lord knows I did, after my mom laid the bad news on me, I had to get off the phone I couldn’t call her for 2 days. For two whole days I studied, I think I knew more about multiple sclerosis than some neurologists. That’s how I knew, that’s how I knew for a whole year and a half that I had the Multiple Sclerosis Beast! Learn multiple sclerosis because now that “studies show” it can be hereditary we need to be mindful of what to look for in your loved ones!
❤ Desmine
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