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“Can you at least explain it to me?” she asks, her hands tightly gripping the towel she’s still holding. “Please? I feel like I just got hit with this wrecking ball of information that I don’t completely understand.”
Sighing, I run my hands through my hair, tugging on the messy strands before letting them go.
“I thought you said my mom talked to you.”
“She did, but she was vague. Said I needed to get the rest of it from you.”
I grit my teeth, irritation rolling through me.
Thanks mom. Drop a bomb then leave me to clean up the mess.
I take a deep breath and let it out slow, then lean against the wall behind me, crossing my arms.
“I have something called Kennedy’s disease,” I tell her, hating the way the words sound as they come out of my mouth. I try to avoid saying them as much as possible, not because I can’t admit the truth but because I just don’t want a constant reminder that I have a disease that’s slowly robbing me of my future. “It’s a neuromuscular disease, kind of like MS.” I pause. “It basically means at some point in the future, I’m going to struggle to take care of myself.”
Busy slowly drops down until she’s sitting on my couch, her eyes carrying that same sadness that was there when she first arrived. “Struggle to take care of yourself how?”
I tilt my head back and stare at the ceiling, pulling up the list from my memory. “Muscle twitching and weakness, issues with my reflexes, shaky muscles, tremors.” I sigh. “I’ll struggle to swallow and speak at some point, too, though hopefully that’s further down the line.”
“Do they…do they have a timeline? For what that looks like?”
I grit my teeth, hating how broken she looks.
This. This is why I don’t tell people. Why only my mother knows. And Sarah, but she’s a different story.
“It varies by person. For me, I’m dealing with some hand tremors. That’s what my pills are for.”
“But online it said it was for seizures.”
I shrug. “Doctors use the same drugs to treat a variety of different things.”
We sit in silence for a while, and I can tell she’s processing everything I’ve told her.
It’s a lot. I get it.
It’s just another reason why I wish nobody knew.
“Your mom said that your disease…Kennedy’s…is why you and Sarah got divorced?”
God, she is just sharing everything today isn’t she.
I guess at this point, there isn’t much point in keeping things to myself. If she’s going to know some of it, she might as well know all of it, so I tell her.
I tell her how I watched my grandfather get diagnosed and then re-diagnosed and mis-diagnosed until they finally got it right. How I watched him decline, watched my grandmother and my mother do everything they could to take care of him. The amount of work and energy and care that went into it once he got to the point where he couldn’t control his movements anymore.
I explain how most men don’t get diagnosed until they’re in their late 30s and into their 50s, but I was one of the lucky few who found out early because we knew what we were looking for when I started to notice some of the early warning signs—fatigue and light muscle cramping.
And then I tell her about Sarah.
Even my mother doesn’t know the full truth about Sarah, doesn’t know what that conversation looked like. How I sat her down and told her about my diagnosis. How she cried. And then, when I offered her the choice, how she left. How she couldn’t leave fast enough. How shefledaway from me and the idea of being stuck with me and this disease.
If only I could run away, too.
“I’m not telling you this so you pity me,” I say, once I’ve shared the worst of it. “I’m telling you because Sarah saw the end, with my grandfather. We were dating at the time, and she came with me to visit him often. Saw all the things mygrandmother and mother had to do for him. Get him out of bed, take him to the bathroom, help him eat.”
I clear my throat, becoming emotional at both the memory of that time for my grandparents, but also at the idea that it could be my future.
“She saw the end, and she knew she couldn’t handle it. And she shouldn’t have to. Nobody should have to. So when she left, I promised myself I would never put anyone else in that position. I knew it would be better for me to be on my own.”
