I am not an early adopter. Definitely not a trend setter. Take for example, my realization in 2005 that leggings were becoming popular once again. I was horrified. “Well, I can’t wear those,” I told my friend Wendie, who had broken the news. Of course, several years after everyone started wearing leggings again, I joined the crowd. And now leggings are the best thing ever, not that I can wear them, because it would require getting stuffed in and out of them multiple times a day.

Further evidence that I will never ride the leading spiral of a trending wave: I have not yet and probably never will embrace the phrase “hot mess.”

This is not merely a style issue. It very much pertains to my approach to life with ALS. I basically wait until I desperately need an assistive device before ordering said device. I was so terrified to be wheelchair-bound, that I used a walker for far longer than I should have. It wasn’t until I started falling even with the walker, and my mobility decreased to almost nothing, the long hallway of our apartment enough to leave my legs shaking and ineffectual, that I pulled the trigger on the wheelchair. And the day that it arrived: Freedom. Scarlet and I zoomed down the hall, and sped around our courtyard and then around the block.

“We’re outside!” she exclaimed. And if that concerns you, as though I was keeping her inside like a flower in the attic, you can rest assured, she was always outside. Me, not so much. So that was the reason for the celebration. We were outside together. We were zooming. I had finally made a decision, and it was sheer relief.

Despite that heartwarming tale of procrastination, I still wait and wait before requesting any additional help from my clinic, the wheelchair company, the respiratory therapy company, and even my visiting nurse who is here weekly. And I am unapologetic about this. Because it’s not that I’m afraid to move forward, to try new things. It’s just that I need time to consider my options and to get comfortable with them. Maybe if my disease was moving more quickly, I would need to move more quickly with it. But we’re both just shuffling along for now.

I was completely uninterested in the BiPAP and the cough assist, and then one day I decided I needed them. Unfortunately, nothing moves quickly in the world of ALS, so while I waited a month for both devices to arrive, I ended up in the ICU with pneumonia, lacking the cough assist I needed to help me clear my crackling lungs. So my timing, though it could have worked out, did not. It happens, even to those who plan ahead.

All diseases are personal, especially the decisions people make around them. And with ALS, that is particularly true. It’s a heterogeneous illness, affecting people in such disparate ways, that we will probably find out someday that it actually isn’t one disease, but many.

People often provide advice to me either via email or on the blog or Facebook. I appreciate the intention behind this occurrence, but I am hyper aware of my options, of the landscape of this disease, of what other people are doing and have done. The decisions I make for myself are not necessarily courageous and forward thinking, but they are my own and I stand behind them. When I’m ready, I move on. I wore the leggings, I sit in the wheelchair. But there are some things I may never be ready for when it comes to ALS—or to new slang.

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