Missing Myelin Pt. 2

As I stated in Missing Myelin Part 1, it is Multiple Sclerosis (MS) Awareness Month. Since I don’t talk about my diagnosis much I decided to share a little more. Selma Blair revealed her MS diagnosis in October 2018. We didn’t hear anymore about it until recently when she did an interview. When I say that hit me hard. I cried when I watched the interview. Not just a moist eye, tears streamed down my face unchecked. I was upset and angry for Selma in regards to it taking 6-7 years to even diagnosis her. I was understanding of her relief at finally knowing what was causing her body to betray her. I was also, empathetic to her struggles with functioning in a body that is so different from the one she previously knew. I cried some more when I seen her on the red carpet, shakily walking even with a cane. Touched by the photographers not taking pictures when she had a vulnerable moment and needed to gather herself. It was a lot for me. It was also empowering. I am one of those people who will use a cane as needed, kinda. I probably spend more time walking around looking drunk than ensuring my own safety. I am getting better at using the walking stick, but would not allow it to show up in pictures. Because of Selma, I proudly rocked my walking stick in a picture in the Bahamas.

Even though Selma Blair’s story touched my heart, I am still MS prejudice. Most people who have MS probably are so don’t judge me. What I mean by this is I would not like to hang around with people whose Multiple Sclerosis is more advanced than I am at this time. I don’t mind meeting people affected by MS, but multiple interactions would be hard on me. The reason is I would let their MS journey influence my thinking about my own. With an illness that is so unpredictable it is easy to let your thoughts run wild. And I also have an overactive mind and imagination. I know my weaknesses. I am not doing great but I’m not terrible either. And where I am right now may be where I will be in 10, 20, or 30 years. I don’t know. No one knows. So why spend time worried about ending up in someone else’s story? I will not. I will walk my own path.

There are things that I truly miss that I am unable to enjoy any longer. Dancing, any kind. I love music and I have a little rhythm so dancing is expected. I still dance a little, but I feel awkward when I do it. The more complicated dances like hustles and ballroom are not feasible. Going for long walks to clear my mind and look at nature. Hell, just walking without having to think about the movement of lifting your foot up high enough not to trip. And then putting it down so that my foot doesn’t drag. As I started to crochet for the first time in months, I realized that I better do it more. I would hate to be years from now having issues with using my hands and unable to crochet. Wishing I would have made more works of art. Gave away more blankets. Blessed more people with helping them to learn to crochet. This will be the third year that I make a blanket for someone affected by MS. And I want to continue this tradition for as long as I can. I have started to notice the decreased feeling in my fingertips. The weakness when I write for any length of time. This makes me sad, but more resolved to do what I love.

I will not give up the goal of living every day to the best of my ability for that particular day. They are never the same. I am never the same. This sharing is not to seek sympathy and I sure in the hell don’t want anyone’s pity. I just want to share my story in case it helps someone else. It lays me bare and I am still not good with being vulnerable. I know people see me and are curious, but of course don’t want to be rude or intrusive. I don’t mind genuine curiosity, so please feel free to ask. I do mind “poor baby”, “that is terrible” and any form of fake sympathy. I get it. I don’t expect people to understand, but I do expect people to be respectful. I know I can’t relate to someone’s battle with cancer or any other condition not affecting me. I believe that everyone has their own burden to carry in life. Mines just happens to be visible. Lol. No matter what burden you carry in life, make it your mission to be well and whole.