The medicine I take six times a day loses efficacy when taken too close to a meal high in protein, so an early dinner of salmon meant a slight delay in drugs. That meant my right toes, foot, and leg cramped up so tightly it was impossible to walk.
Cramps also attack when I don’t move enough or often enough. Like after a three-hour car trip. Or when I don’t take my usual walks. My right arm and hand stiffen so that I can’t write and can barely type.
One of the first symptoms of Parkinson’s – we didn’t even know – was losing my ability to tell stories or explain, well, anything. Laura noticed. I noticed but didn’t understand. Erik can tell where I am in my medicine schedule by how long it takes me to finish a sentence and how many pronouns I use.
Imagine that. An English teacher, writer, editor, and program manager who can’t explain, describe, or express herself clearly. Losing what was my life for almost 35 years.
I have been asked to participate in a forum on Parkinson’s in Washington, D.C. It includes a day and a half training and one day meeting with legislators on Capitol Hill.
“Well, Erik is going with you, right?” has been the reaction of friends.
“No, actually. He’s not.”
We’ve talked about it a lot. Can I navigate with help? How much help? What kind? Does Erik need to be there or can I arrange for other help? Have we reached that stage? How do we tell?
How do I know?
Erik pushes me toward independence. I still drive because of him. I push myself because of him. I am stronger because of him. But those pushes result in anxiety. Do I have the ability or am I just willing myself to do it – no matter what the “it” is. What if I push myself too far in a way that could easily result in disaster, not just inconvenience?
“We don’t know how this will progress,” I told Erik when we got together. We still don’t know. I did not know I would lose an eye; have the vision in my other eye degrade; suffer side effects of drugs that steal two days of every week; wake up in the dead of night, terrified that the pain of opening my eye means I won’t be able to see.
“Did you think about this when you came back to me?” I asked Erik today when we were talking about the Washington trip, about my limitations.
“No, I thought about how I wanted to hear the sound of your voice,” he said. “When the uncomfortable thoughts came, I hid under your words that we didn’t know what would happen.”
He has questioned whether he has what he calls “the wiring” to shepherd me through this. But I believe in Erik more than he believes in himself. I trust that the love that has seen us this far will continue to do so, loving him more than I thought I could love again.
But together we need to make decisions that work for us, that work for me, and work for him. These decisions might not be the same as other couples would make. Their decisions might not be right for us. But decisions have to be made.
And right now, we have decided – together – that I will go to Washington, D.C. I will arrange for the help I need, and I will take it slow. Because after all, how do you know you can succeed if you don’t try?