Oh! You, Too?
It was like a brain freeze without the cold part. I was frozen in place and my brain went blank. I had no words. I think my mouth may have been open. I do not clearly recall what else was going on around me. I simply knew that I heard the same insult a large number of people living with multiple sclerosis (PLwMS) have heard from people who lack empathy or an understanding of what this chronic illness entails. I was told that multiple sclerosis is a cover for my not doing more and that people have the ability to overcome any obstacle, if they so choose.
Why you of all people?
My brain defrosted because I have to have a reply. There was no way I wanted this comment to hang in the air unanswered. Only, I did not have words. I grew up with this person.
We have a deep history of shared experiences. As expected there is a secret language of code words that refer to things only the two of you know. It might be a scene from a television show. It might be a shared sports activity. It could be a trepidatious trip turned into a car adventure out of the movies. They have known me for several decades. They think I am a lazy faker.
Seeing is knowing
It didn't matter that the comment hung in the air while I formulated a response, because they quickly filled it in themselves. "No, no, no. I don't want to hear it," they said in way that implied that physical finger wagging wasn't necessary. It seems that seeing me for a few hours in the day constitutes all they needed to see to make the assumption that I am not doing my best to cope with MS.
It was an incomplete view of a life interrupted and disrupted. Wow! I was being judged when I was at a physical low point. Much like a parking lot vigilante decides whether or not you are disabled by what you look like on any given day, this loved one judged me without the facts.
Behind the curtains
The truth of the matter is that I work and practice my advocacy from home. I am fortunate to not have set hours, so I can accommodate my most prevalent MS symptom: fatigue. I have written previously about my struggle with lassitude. It has been one that affects me as much emotionally as it does physically. I dread being called lazy for a variety of reasons that run from a childhood desire to please an instilled generational expectation that I not fulfill negative racial stereotypes.
Lazy is a word and concept that wounds me deeply when it is thrown out. Objectively, I am far from lazy. I do the best that I can when I can. I have documentation of the work I do. I can account for my time. None of that mattered. Their impression was already set and I was a loafer.
I object!
My first reaction to being told that I am a faker was to defend myself. I wanted to throw out a couple of my accomplishments. It was an instant reaction akin to being excited to show your relative what you did. It was that feeling of pride that might accompany waving a piece of paper in the air. My daily working situation is not traditionally structured and neither is my place of work in my home. I thought of these as part of the obstacles I overcome. Instead, this indicated that I was not doing anything at all.
Jumping up and objecting was a genuine consideration. Strangely, I knew that I should not bother to utter a word of defense. When they said I had no excuse, I had to trust that they believed it to their core. I did not need to be told or burned twice. Multiple sclerosis is serious. I have multiple sclerosis, and I have serious symptoms.
Adjustments needed
The closeness that I thought we shared did not exist. I was the only person who hugged these built-up memories. Recalling and caring are two different things. I cared. They recalled.
In this state of affairs, avoidance is not possible. I have to live daily with the knowledge that someone I loved like a sibling was never the person I thought they were. I am still processing, because the hurt is like an anesthesia. There are times in life when you take a deep breath and do the grown-up, adult thing. This is otherwise known as sucking it up. I am just doing that until I think of something else.
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