Unlike a lot of other people who suffer with Multiple Sclerosis or Cerebral Palsy, mine hide most of the time. I wear them under the skin and the way they affect my body usually can’t be seen by others.
I am in pain of some sort every day. The spasms from the Cerebral Palsy make sure of that; but I was born with CP, so it’s nothing new. Having MS makes it more complicated though as it causes spasms of its own.
Usually, the only time my CP/MS brings things out into the open is when I’m having speech problems or fatigue issues. There are times when I have spasms in public, but they pass quickly and I’m usually okay.
Well, that wasn’t the case yesterday. I was out for brunch. I went to get up and go to the washroom. When I stood up, I had a spasm in my right foot. It was as if someone was jabbing sharp needles into my foot.
I don’t know if I cried out, but I’m pretty sure I did. I had to hold on to the table to balance myself. I still had to go to the washroom so I began to move towards it. My right foot was still spasming so I had to step gingerly. That threw my balance off, so I had my arms out to catch myself if I fell.
As I walked towards the washroom, two women were coming towards me. They started smiling once they saw me coming nearer to them, not out of kindness but out of derision. They rolled their eyes and one of them turned to the other and said: “Drunk already.” I heard them laughing as they walked away.
I went to the washroom and as I was standing there, holding on to the wall to keep my balance, my face burned hot. I felt humiliated for something I hadn’t done. I squared my shoulders and walked out and back towards my table.
There was a couple at the table behind mine. They watched as I walked past, they gave me looks of the deepest derision, like I was contaminated by something. My cheeks burned brighter, out of shame or embarrassment I didn’t know.
I paid my bill as quickly as I could. I felt like everyone in the restaurant was staring at me. When my bill was paid, I went outside and began the slow walk home.
At first, I was mad at myself for not saying anything. I could have said something, especially to those two women. Something that would have made them realize I wasn’t drunk, that I had MS and CP, that there was a cause for my bodies odd movements.
Much as I could have said something to the couple at the next table over, told them to wipe those looks off their faces, stood up for myself against their rudeness. Then I was mad at my body for behaving the way it did. I was embarrassed and then mad at myself for being embarrassed.
It was not my body that embarrassed me, but the actions and words of other people. I wasn’t mad at the CP/MS (I’m never sure which one of them creates the spasms anymore) because they are part of me and of who I am.
I was mad that people were so quick to judge, that they would judge me without even knowing me, label me as a drunk. It’s happened before. Once last year, before my diagnosis, I was walking down the street and stopped to have a cigarette. My body immediately started being difficult to control. I started walking like one of the Walking Dead zombies.
A woman passed me and turned around and said: “You should do your drugs at home, not out here where others can see you.” She kept on walking leaving me too stunned to respond.
The thing is, I could have told the women or the couple at the table next to me in the restaurant that I had CP/MS, but would it have made any difference? They were still so quick to judge me, so quick to label me as a drunk. I didn’t want to tell them when they so obviously didn’t care and it was none of their business anyways.
However, I’ve resolved, upon further contemplation, that the next time it happens (and unfortunately, there will be a next time) I will tell them (in the kindest way I can manage) that I have a physical disability and a disease. I will tell them so that the next time they see someone who is having difficulty walking they won’t be so quick to assume that they are drunk or high.
That the next time, they will hopefully remember what I told them and treat that person with kindness instead of disrespect.
The next time, I will be ready.
Hugs! Sometimes it’s hard to defend ourselves, it takes courage. But you’re one of the bravest people I know. Do whatever feels right to you. ❤
Amen!! Well written. I have had to defend the people I am friends with, myself and people I work for. Society as a whole needs to get a wake up call. I had one woman look at me, apparently whole being that I am, as I left an accessible stall. I was told I had no disability and should leave that stall to “the retards”. OMG! I took a breath, smiles and said, with saccharine sweetness, “Not everyone with a disability has one that requires a walking aid at all times. I am happy with the fact my legs work today, they just hate standing up without assistance. Just so you know, being disabled doesn’t mean you are retarded. But attitudes can definitely be. Have a great day!” I then dried my hands and walked away. Bullying is not just happening on the schoolyards and I wonder if compassion can be taught.