Although I use wheelchairs at work and for distance, my walker still supported those 50 or so paces from my door to a car or into a restaurant or around the house. Until two weeks ago.
At the beginning of a vacation in Bend, Oregon, my legs left me entirely. I needed assistance to move at all. While I could stand briefly, others had to physically manipulate my legs to walk. The wheelchair came indoors, and Lisa had to help me get into the restroom. Instead of enjoying her reunion in beautiful Bend with her best friends from college, we were distracted with my new symptom.
I have no idea why this happened. What I do know is that my mind fixed on the possibility that this was it: the moment I had to commit entirely to the chair. Lisa and I both grieved as we tried to put on brave faces for our friends.
With lots of hands helping, I managed without an electric wheelchair for the time being. But what about the next week? Lisa would return to work. I would have to negotiate stairs to even enter my house again.
I texted my neurologist, but she had no further options. Even though I avoid steroids because of the resulting osteoporosis, a three day treatment had kept us an extra day in Seattle when I had started losing my legs. We had decided to fly instead of driving the 6 hours to Bend. Having also recently completed an IVIG infusion, I had now hit my system with every tool available for short term recovery. The word came back from the doctor — she would see me at our scheduled appointment in two weeks. She had done all she could. I was on my own.
Mine is a progressive disease. Was this the new normal of the progression? I had always wondered what the last step before the full time wheelchair looked like. I worried that now I knew. My mind raced. How fast could we ramp the house? Would we move to our first floor bedroom? Did we need to hire home health care? What will it be like to not have the option of taking a few steps? Life was really changing, maybe forever.
And then, suddenly, my legs came back. Just as quickly as they had left. I stepped down off a stool where I had been perched for about an hour, and my left foot could lift just a bit again. My right leg kicked in strongly. I was walking with the walker. The attack had lasted only a few days. My legs reverted to their usual, familiar difficulties.
We celebrated. My troubles turned out to be a temporary setback, not the death knell of walking at all. My fear turned to a longer timeline for the ramp and chair. Concern replaced terror. Sadness left for now.
Still, it was a terrifying few days. And a reminder of all the work we need to do in order to prepare for this situation to return. We will see this again, and next time we will be both more prepared for the loss of function and more hopeful about this loss being temporary. I have been warned.