I’ve been losing control of myself for a while now.

Over the past year, I’ve noticed a worsening in my symptoms. I am in far more pain than I ever have been before. It’s gotten to the point in the mornings where I have to sit down while I brush my teeth just so that I can give my legs a break. I’ve had a hard time walking, my fatigue has been more pronounced, and my other symptoms have been more active; I’ve had difficulty speaking and my brain fog is a lot worse. Part of me thought that this had to do with the pandemic but the other part of me, that just kind of knew something had changed within me.

I had an MRI recently and I’ve been waiting for the results. I had a follow up appointment with my neurologist, but I had to wait a further seven to ten days while they compared the results from the newest MRI to the most recent ones. Seven to ten days is an ocean of time when you are waiting for any kind of results. Part of me just wanted confirmation of what I already knew. I wanted to see it there in black and white.

This morning, I got an email saying that my test results had come in. That email kept flying around my head. At times, it felt like I had a bird inside of me that was trying desperately to fly out of me. I kept having to soothe it and calm the bird down before I went crazy. It held a letter in its beak, and I knew that letter held my results.  It kept hopping into my line of vision so that I couldn’t help but see it. When I was done work, I finally logged in and clicked on my test results. The bird finally flew free; I didn’t need it anymore.

The test results were a jumble of words and medical lingo, but in that jumble, there was an undeniable truth: I had new lesions as well as lesions that hadn’t been detected before.

I don’t know how I feel at having my intuition confirmed. I read through the information twice and then had my husband read it. It was easier than trying to recount it at first. I went out onto the balcony and let the sun wash over me. I thought about everything I have done to get to where I am. I’m living my best life, trying to be mindful of my disability and my disease while still living as much as I can.

I stood there thinking things through. I’d learned to walk again, speak again and regain function of my body. I had changed as many of my bad habits as I could, I embraced a healthier style of living…and yet, my body was still fighting against me. The dark part of my brain turned really dark and I began to wonder if it was because I wasn’t kind enough, giving enough, in touch with my spirit enough. Had god or whoever was up there found my efforts lacking in some way and decide to punish me?

I knew that that wasn’t it but couldn’t help but let my brain go there. Part of living with multiple sclerosis and cerebral palsy is living a life where a large part of it is out of my control. I try to control what I can be living with a routine that I can control. However, my body will remind me that controls what happens.

I talked about it with my husband and then with my mother, almost crying both times. It was when I was talking to my mother that something occurred to me. I voiced it out loud: The MS may try to control my body, but it does not control my life. I am choosing to look at what I can learn from this situation. I have climbed the flat mountain before, making it to the very top. My life is not over even though I have an unpredictable disease within me. It does not control my enjoyment of life or the life I lead. I can’t let the MS take that from me, so I’ve decided that it won’t. Even within a roaring and twisting sea, there is hope.

My mother told me that I don’t have to sparkle if I don’t want to, but I countered that you only really see the stars in the dark. I choose to sparkle on, knowing that it will bring me light within the dark. I will sit with all of this for a day or two and then I will get on with living my life and the light from the stars will bring me hope.  

I did let the tears come and they brought me some relief. I know that they may come again. I just need to remember to sparkle so that others can find me within the roaring see, a star floating upon the waves.