When My Legs Don't Listen

Last night, I was heading into church.

Nothing extraordinary. Just getting out of the car and walking toward the building. There was a curb in front of me, and I did what most people do without even thinking about it. I told my leg to step up. Except it didn’t. In my mind, I had lifted my leg.

My body was already moving forward because I fully expected my foot to clear that curb. My leg had other plans. My foot slammed straight into the curb while the rest of my body kept going forward. I almost faceplanted right there in the parking lot. Thankfully, the car was beside me, so I was able to grab onto it and keep myself from hitting the ground. And after the initial thought, "well, that could have been bad," came the frustration. Because I thought I had lifted my leg.

ATTR, and when your legs and brain disagree

That is the part that is so hard to explain. My brain knew what to do. I wasn’t confused about how to step onto a curb. I saw it. I prepared for it. I gave my body the command. But somewhere between lift your leg and actually lifting it high enough, something didn’t happen the way I expected it to.

The movements we take for granted

Transthyretin (ATTR) amyloidosis has taught me that we take an incredible number of movements for granted. Step up. Stand up. Walk across a parking lot. Get out of a chair.

Climb one stair. You don’t normally celebrate when your leg clears a curb. You don’t think about the muscles involved or calculate how high your foot needs to come off the ground. Your body just does it. Until one day it doesn’t.

Noticing mobility changes over time

I’ve noticed the changes in my legs more and more. Not long ago, I watched my sister walk up a set of stairs - one foot on one step, the other foot on the next - and suddenly realized I don’t do that anymore. I put one foot on a step, bring the other foot up to meet it, and then tackle the next one.

I remember wondering, When did that change? Was there a specific day? Did it happen slowly enough that I adjusted without realizing I was adjusting? And now I find myself asking that same question again.

When did stepping onto a curb become something my body couldn’t automatically do? There is grief in moments like these that probably doesn’t make it into a medical chart. The chart might say weakness. Mobility impairment. Fall risk. Disease progression.

What the medical chart doesn't capture

But those words don’t capture standing beside your car frustrated because, for a split second, your body didn’t do what you told it to do.

They don’t capture the embarrassment of almost falling in public. They don’t capture the fear that follows: What if the car hadn’t been there? And they definitely don’t capture the bigger question that sometimes sneaks in afterward: What will my legs stop doing next?

The frustration of adapting to mobility changes

That’s one of the difficult things about living with hereditary ATTR. I have learned to adapt. I use mobility devices when I need them. I hold onto things. I think about curbs and steps differently than I used to. I find another way. But adapting doesn’t mean I’m not frustrated. Sometimes I am really, really frustrated. I’m 49 years old. I want to get out of my car and walk into church without having to think about whether my leg is actually going to lift when I tell it to. And maybe that’s something worth talking about more.

Progression isn't always dramatic

Because progression isn’t always a dramatic event. Sometimes progression looks like a curb. Sometimes it’s realizing you’re climbing stairs differently. Sometimes it’s reaching for the car because your body is going forward and your legs aren’t coming with you. They’re small moments until you’re the person living them. Then they don’t feel small at all.

Still moving, still adapting

ATTR has changed a lot about how I move through this world. I’m still moving through it - sometimes walking, sometimes holding on, sometimes using wheels, and sometimes nearly losing a battle with a curb in the church parking lot. But I’m still here. I’m still adapting. I’m still going. I just wish my legs would listen a little better.