Please Let Me Talk About the Parts of Multiple Sclerosis I’m Afraid of
I am blessed to have loving and attentive family. A mother and father who adore me, a sister who never left my side growing up. I am also blessed with friends I have had since the sandbox, since elementary school, since junior high.
Throughout the years, watching me struggle through the first unknown years of battling multiple sclerosis (MS): the rocky climb through the unknown diagnosis phases, on into the official diagnosis and later the inevitable years of progression, have been tough. On all of us.
Many of my friends know me well enough to realize that when I’m having a rough go of things, be it life or a relapse or just a bad MS-y day, to let me process and maybe be fussy for awhile, and I will calm down and be myself again.
Others just hang out, and we don’t have to talk about MS at all, even if I’m droopy-eyed or unable to eat.
On occasion, a friend will say, “I know you’ll be OK.”
They say, “You’ll be fine.”
Or, “You’re fine.”
These phrases are meant to be reassuring and kind. A positive outlook. For me, though, at times, they break inside of me. The words shatter into tiny pieces that cut and resound a reply I say only in my head, “I will fail you.”
I do not want to fail you.
For the next time I get sick and relapse, and there is nearly 99.9 percent guarantee I will — over and over and over for the rest of my life — I will feel like I failed you. That I was not fine. That I did not think positive, so I deserve what I got.
These well-meaning phrases also make me hesitant to share what I am afraid of — what might happen to me as my MS progresses and my body degenerates. They leave me alone with the thoughts that scare me the most.
I am positive. I am also realistic. I understand MS inside and out, more than my friends or family ever will. That’s OK. That’s my job, my burden, my decision, my power. My life. I understand that thinking in a positive manner will help me live a good life. I also understand that if I relapse, even irrevocably so, it isn’t my fault.
I understand it’s OK to be afraid at times.
“Please, let me talk about what makes me afraid.” Samantha said this once in an episode of “Sex and the City” when battling cancer. Her best friends kept repeating, “You’ll he fine.” They meant well, and wanted her to feel good and happy about her future. But for Samantha, and for me, and many of the chronically ill, we need to feel that it is OK to be frightened. That it is OK to be unwell. That it is OK to not always be OK.
I am not always OK.
At times, I am scared.
The friends and family I surround myself with not only know this, they honor this. And I am grateful for them, heart and soul.
Make no mistake.
We do not choose this fate of MS. We do not choose this life. But those who love us, do choose this life. They do choose us. MS-y and all.
And we choose them.
Getty photo by skyNext