“Things are not always as they seem; the first appearance deceives many.”
One of the most difficult aspects of life with MS has been learning to cope with the embarrassment that comes along with my symptoms or my limitations. Hard days seem to just be made up of a series of one awkward moment after another.
Sometimes I blank in the middle of a story or a conversation and have to ask my listeners what we were just talking about. Other times I can’t remember a conversation we may have had just a few days ago. I might struggle to remember a good friend’s name or the word for something simple like “rain” or ” car”. I frequently forget how to spell things and if you’ve read my other posts, you know that I’ve always been an overachiever when it comes to spelling. I’ll mix up the letters and “how” becomes “who”. It makes for some pretty embarrassing texts and/or emails. Everyone experiences lapses like these from time to time but with MS, it’s somehow different. It’s not just forgetting for a moment. It’s like my brain can’t make the connection and I can’t make it process an intelligent thought for a few seconds. In those seconds, my mind is absolutely blank. I can’t remember triggers or even words that are similar. There’s just nothingness.
Perhaps the scariest is when I forget how to do something. I might go to turn on the faucet and I won’t remember which side is hot and which is cold or I might stare at the controls in my car for 30 seconds as I try to make sense of of them to operate the radio or the A/C. It’s not that I just forget the series of steps or what each button does. It’s like something in my brain lapses for a few minutes and I can’t even make sense of what I’m looking at. Faucet handles are not handles. They’re just pieces of metal that I can’t figure out what to do with. Knobs and buttons in my car are just shapes, colors, and words that my brain isn’t able to interpret. The best way that I can describe it is if you looked at a series of letters on a paper and saw it as a drawing vs. a word. The brain can’t interpret it as a word because it’s never seen letters before. That’s what it feels like – like my brain has never seen the item before and has absolutely no idea what it is, let alone what to do with it.
These temporary lapses are caused by the lesions (scarred tissue) in my brain, caused by what neurologists call “disease activity”. I always have MS, but because I currently have a form known as Relapsing-Remitting MS, it means that it can sort of go dormant in my body in the form of remission. When the disease flares up again, it’s known as a relapse and results in further damage to my central nervous system as a result of the progression of the disease. Relapses can occur at any time and are thought to be triggered by emotional as well as physical stress on the body. It’s important to note though that even when in remission, most MS patients still suffer symptoms on a daily basis. So, although my MS is in a remission today, I’m still experiencing symptoms of my first relapse as well as the most recent one. I probably always will because those lesions are not likely to ever heal. That’s why my right hand is still mostly numb and my right leg is weak. Those are lasting physical disabilities caused by the fried nerves and connections in my brain and spinal cord.
Although the cognitive deficits are one of my huge stumbling blocks right now, I also struggle quite a bit with the physical ones. When I walk for extended periods of time without breaks, my legs begin to weaken and my knees will buckle. I most recently experienced an extreme version of this symptom after a concert that I attended with friends. We stayed in a hotel a mile or so down the road so we walked to the venue. The walk there was doable but after standing/dancing for a few hours during the concert, my legs were shot. The walk back was difficult and I needed to move slowly to prevent a fall. There were crowds of people rushing out of the concert hall in all directions and every time I tried to veer off to the side, I was in someone’s way. I began to get frustrated which made it even more difficult to walk. I waved the others on and my husband stayed behind to keep pace with me. As the walking got more and more difficult, I began to hold onto his arm for support, then his waist, then finally his shoulder. I was unsteady and hanging onto him for support, his arm was around my waist. I heard a few people laugh as they passed by and at first I paid no attention but then I looked at myself and it was at that moment that I understood the meme – I’m not drunk. I have MS.
I looked around and realized that people thought I had had too much to drink at the concert and was just irresponsible and drunk. I was angry and embarrassed and I began to cry. I wanted to shout, “I’m not drunk. I have MS,” to everyone that passed us. I noticed more people staring and I cried some more. My husband provided words of encouragement and offered to take breaks but I was afraid that if I stopped, I wouldn’t get going again. I cried as we hobbled back to the hotel because I was angry at the ignorant people who made assumptions about people they didn’t know and I was saddened by the fact that I couldn’t even manage to attend a concert without my MS interfering in some way.
That was one of my hardest days yet when I think back on how my symptoms have changed my world and it was definitely embarrassing, not because of what people saw, but because of what people DIDN’T see. I knew that if I had just grabbed my cane, it would have been an entirely different situation on the walk back to the hotel. Maybe people would have given me more space or flashed me a polite smile as they made their way around me instead of laughing and blowing their cigarette smoke my way. MS is embarrassing at times, but it’s even more embarrassing when people assume that I’m dumb or lazy or just some drunk who can’t even walk herself home from a concert. I take the handicapped elevator at work when my legs are weak and I look away from the rude onlookers who give me dirty looks. I stand on the escalator at work sometimes instead of walking and move to the side as others rush past me to beat me to the elevator. I sometimes park in the spot that’s not technically a parking spot at Kroger when I run in to get my morning coffee at Starbucks and I avoid eye contact with anyone I pass as I approach my car for fear that they might judge me.
Even though I am embarrassed at the fact that I can no longer count on my body to get me through the day, I’m even more embarrassed for you for only seeing what you want to see vs. what is really there. I don’t look disabled, but some days I am.
I know that it’s lame to say that everyone is fighting a battle you know nothing about, but it’s so true so I’m going to say it anyway. Everyone is fighting a battle you know nothing about. I am just one of 133 million with a chronic illness. I have a soul. I have dreams. I have goals. So don’t be a jerk. Be nice to people until they give you a reason not to.
Inspired by the Daily Post prompt: Embarrassing