Slipping & Held

I wrote this post a few years back, but came across it in my drafts today…

Sometimes it gets easy to not really think about being sick. In the day to day my normal becomes so routine that it just feels like things have always been this way. Then there are days like yesterday that have an ice cold slap kind of way of reminding me the fragility of my every day.

In the cold drizzle of early morning Mark drove me to my neurologist’s office for my 3 month Botox appointment. My doctor is one of the kindest I’ve met. His gentle demeanor and tender concern have a way of making me feel seen, remembered, heard, and valued. We began the appointment as we always do, bringing him up to speed about any changes in my condition since my last visit. This is where I’m reminded that this disease presses on. We compare my movements and symptoms, and he questions me about my cognition and memory. I have to defer to Mark because, well, I can’t remember.

“How does she seem to be doing?”

Mark’s eyes dart to mine, and I sense a hesitation before he answers.

“She’s slipping since the last time we were here.”

I listened as my groom of 21 years explained how I repeat myself, asking the same questions and going through the same motions over and over without any clue that I’m doing it. My face flushed with embarrassment as I squealed, “Babe! You should tell me when I’m doing that!” And his reply highlights the kind of gentle and selfless loving he showers me with day in and day out. “Telling you would not change anything, it would just make you feel bad.” He went on to explain to my doctor how he and the kids patiently listen to me say and do things multiple times and they play along like it’s the first time so that I can feel more normal and less afraid. And that, my friends is the truest love, and I am the blessedest blessed for having a man who is so thoughtful with my heart as we wade through these sometimes intimidating waters.