What Happened When I Explained My Disabilities to My Brother

“So,” my brother began, “how long do you think you’ll be able to go grocery shopping by yourself?”

We were standing in my tiny kitchen gabbing like we usually do while I put away my groceries. The question was unexpected, not to mention uncharacteristic. He isn’t usually that direct, and I struggled to think of what he was really getting at. “Well,” I drawled, “Indefinitely, I hope!”

Grateful for the help

Whenever I go food shopping and drive back to my apartment, I always text him with a single word: Groceries? Like magic, he appears at the side door and grabs the grocery bags from my back seat. My brother has lived in the apartment next door to me for less than a year. Several months went by before I started asking him for help. Stubbornly independent, I didn’t think I needed it but I knew he wanted to be helpful. Now I’m grateful for the help. That is still very hard to admit to myself.

It's hard to explain MS symptoms

He quietly stood there and made eye contact with me as if waiting for more of an explanation. “My leg strength has been pretty stable for years,” I offered. “But — that’s not exactly true.” He was still listening. That must have emboldened me to say more. “It’s really hard to explain MS symptoms. It’ll sound like a big bunch of contradictions and I’m always afraid people can’t follow what I’m saying.” Still he was listening.

My leg weakness

Now I was feeling something like stage fright. Professional performer that I am, I funneled that nervous energy into my speech, hearing the contradictions in my story that I warned him about. I approached it chronologically. I had an attack in 2009, and for the next three years, couldn’t make it through a whole shopping trip with my then husband, abandoning him in the dairy aisle to sit in the car and let him finish it. My legs had weakened but not enough to use a wheelchair.

Newfound stability

He divorced me soon after. Having to go it alone, I adjusted my shopping to two or three bags of groceries, an amount I could handle myself and without spending too much time on my feet. Then in 2013, Ampyra came on the market. It seemed to strengthen my legs, although that was not what it claimed to do. I was able to do big shopping trips, stay on my feet throughout, load the bags into my car and drive back home, grab a shopping cart from the laundry room, push it outside to my car, load it with groceries, push it through the side door and into my apartment, all without having to sit and rest. What an improvement from my married days! I reveled in this newfound strength and independence. But stability can be deceiving when you have MS.

My body's ability to compensate

Last year, I saw my neurologist at least three times. Each time she checked my leg strength, and each time she tapped my right thigh and said “Right leg is still weaker.” It’s not something I noticed! It didn’t feel weaker than my left. I could still bop through the grocery store. I marveled at how my body compensated for the new weakness. I also wondered if the increased sciatica pain was a consequence of that adjustment.

I could see he did understand

I looked at my brother, expecting to see confusion. “Did any of that make sense?” "Oh yes," he said, "my body has been doing the same thing with my stroke symptoms." It was a good analogy. He’d had a mild stroke shortly before moving next door, causing light-headedness, anxiousness, and one-sided weakness. I could see he did understand.

I also understood that his original question how long do you think you’ll be able to shop on your own was his way of telling me he wanted to help me shop too, not just bring in the groceries. It’s nice to know he’s there and willing to do more despite his own disabilities.

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