What I Tell My Son About MS

I recently watched Selma Blair’s documentary, Introducing, Selma Blair. What stood out most to me was her son. Her relationship with him, his journey with her through MS, and her fears for him. Her son is not much older than my son, and they were about the same age when our MS journeys began. So, I thought of my son while watching her with her son, the love, the fear, and the sadness. I cried more than once.

I’m a single mom. It’s just me and him. He was with me the day I woke up, unable to see out of my right eye. He saw me unravel, trying to figure out what was going on, start to panic, and have to sit down to catch my breath and slow down my heart. He handed me baby Yoda to comfort me. During the pandemic we binged Mandalorian, got a plush baby Yoda, and it had been our source of comfort whenever we were sad or having a hard day. That morning, when I was worried I may not be able to see, my seven-year-old said lots of people can’t see at all and they’re fine.

He saw me going and coming from doctor’s appointment to doctor’s appointment, while he hung out with his grandparents. He was there every day when I was sick from steroids and, later, a spinal tap. He helped bring me water, entertained himself, and got his own snacks. He’d play video games or watch TV and let me sleep when I needed to.

I explained to him that the doctors were doing lots of tests to find out why I couldn’t see and if they could fix it. To him, me not being able to see wasn’t that big of a deal. So, he mostly didn’t care and just went about being a kid. After months of stay-at-home orders, virtual school, and working from home, being in the house, doing nothing, was not that unusual. I tried not to let him see me panic and cry during those first months; I mostly did that after he was asleep.

Once I knew it was likely MS, I started talking to him about it. I explained MS is a disease where your immune system, the fighters that attack germs and viruses like COVID, get confused and fight your brain. Your brain has all kinds of wires that send signals all over your body, telling it what to do, like when you want to wiggle your toe or move your leg. Normally, the wires in your brain are covered in gooey slime and everything slides right down the wires fast and easy. When you have MS, that gooey slime gets attacked, so when your brain sends a signal, it glitches. When light comes in my eyes, my eyes send a signal to my brain, but the wire to my brain glitches and I don’t see what I’m supposed to see. Or, sometimes, the wires from my brain to my leg glitch and make my leg shake for no reason.

I’ve talked to him about getting MRIs. I told him I was scared before I went, and after told him it wasn’t that bad. I explained that when your fighters attack your brain, it’s like a cut on your skin. It grows back, but leaves a scab or scar. And, those spots, that’s what the doctor is looking for. The MRI takes pictures of your brain to look for those spots. Just the other day I showed him a brain MRI someone else had shared, with large lesions, and then showed him mine to compare. He was confused; he didn’t see any lesions. I can’t see them either. My neurologist showed me before, but I don’t remember where they were. They’re there, but they’re small.

When I started giving myself shots, I explained that the medicine was trying to stop my fighters from getting to my brain. He was fascinated with the process and liked to watch. He’d grab me ice packs and let me lay down and relax after. Although, he did not have much sympathy for my whining about how much it hurt.

I try to be honest about MS. I talk about my symptoms. I tell him how I feel. I tell him that for some people, MS can get worse and I may not be able to walk or see some day. That’s why I do the shots, even though they hurt, and try to eat healthy and take vitamins. I guilt him into going for walks with me, explaining that it’s good for my MS. But, I also tell him that people with MS may be fine and just have some aches and pains like I do. I let him know that my doctor thinks my MS is pretty mild.

He’s very aware of my MS, which I talk about all the time. But, he doesn’t seem worried or concerned about it. It just is. Just like I’m a lawyer, or I’m short, or I’m a mom. I did watch a documentary about MS once, that had showed people with pretty severe disability. He did not like that and I turned it off. I purposely watched Introducing, Selma Blair while he was with his dad. But, for the most part, he’s not really concerned about my MS. He just gets annoyed when I’m too tired to play with him.

My approach, as with everything, is to be honest, but age-appropriate. I shield him from unnecessary worry and concern, but I don’t lie. I talk about his increased, but low, risk of MS and the importance of taking vitamins, eating healthy, and staying active.

It’s been a while since I’ve talked to my son about how MS effects the body. I mostly just talk about how I feel. So, on the way home, thinking about writing this blog, I wondered what he remembered about MS after all the conversations we’ve had.

Me: What is MS?

Him: It’s a piece of “s” (yes, he’s cursing, but, he’s not wrong and he did censor himself) disease that infects people….it makes your hands hurt, makes you shake, and it’s little things in your brain. And you have to get painful shots.

Me: Does it scare you?

Him: No.

Me: No? Did it ever?

Him: Maybe a little on day one.

I think I’m doing okay… 😉

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