Flexibility is a wonderful quality. I have it; my daughter does not. Not a condemnation, just a fact. If things don’t work exactly like she’s planned out, she’s absolutely blotto – dead in the water. She can’t make a coherent decision beyond that point, because she hasn’t thought out any of the alternate scenarios beyond the one she’s chosen.
Flexibility is a survival tool.
Like the reed vs. the oak tree in a hurricane, if we can’t bend, we gonna break.
This week B went to pick up his pills from the pharmacy. Because he’s on L&I and they pay for his medications, he has to fill them at precise intervals. If he happens to use more than what’s in the bottle in the interval between fills, he’s out of luck. This means both that the neuro prescribing the drugs has to be generous in the monthly estimate, and that we have to be vigilant in ensuring we fill as soon as we need to but not before.
The only challenge comes when the pharmacy can’t keep up.
This time when he went to pick up his script, the pharmacy was out of Requip and it was on a back-order. It’s not like an antibiotic or something that you can wait on a few days, of course – he had to have it NOW. The only alternative was to take the generic formulation, which they did have in stock. “It’s made in the same factory with the same drugs”, they told him. And so we tried it.
Yesterday was pretty miserable, to put it concisely. Not only were the side effects a whole lot worse, but the variation in the drug formulation makes it incredibly hard to titrate a dose. I wondered why he had been so stressed and testy, but didn’t put two and two together. Last night the drug unexpectedly wore off. We were killing time before bed, me with my laptop and he with his puzzle books. I went out to find him when I got sleepy, and knew right away that something was amiss. You could tell by the way he was standing. When it’s bad, he collapses in on himself, in pain, all the strength and confidence gone.
I went over to give him a hug. He rested his chin on my shoulder. “I’m stuck, honey.” He whispered, sagging in my arms. “All the meds were just… gone.”
“I got you, love.” I whispered back. “Let’s go to bed.” We made our way back inside, took another pill and went to bed. Even then he was in a lot of pain. “What can I do?”
“Snuggle with me.” He said, and I curled up around him for as long as his muscles would let him lie that way. As he turned and moved, trying to get comfortable, he kept a hand on my skin, like a touchstone. I wished I could take it all away, the pain and the stiffness, but at that point there is nothing to be done but wait for the drugs to take hold. Finally, after a half hour of misery, he said “Get your laptop and post something on the bulletin board for me”. He dictated and I typed, a missive to caregivers about what it’s like on the other side of the fence, when the meds aren’t working and what it feels like to be trapped in your body, unable to escape.
After an hour and a half, he was able to get comfortable and sleep. But here we are, stuck with another months’ worth of generic pills and unable to trade them in even when the good ones come, and L&I won’t pay for them twice. So we have to endure.
Deep in the middle of the episode last night he said “What have I gotten you into?” My eloquent words always fail me at the time of crisis, and so I said something comforting and throwaway. What I should have said was this:
You have believed in me, you have cared for me, you have loved me, you have brought me the best moments of my life. Being with you, even in the hard times, makes me into the person I always wanted to be – the best version of myself. I would no sooner trade my time with you than I would take out my own heart and throw it away.We are tested in the fire. The weak ones burn up and fade away. The best of us turn into diamonds. Will this road be difficult? Of course. Is it worth it? Over and over and over again, I would choose this life.
Today is a better day than yesterday was. He knows now that he has to play very closely to the rules with the generics, and can’t push them out as far. This means that we will have to be a little bit flexible. But then, what are we if we cannot bend for life? If we cannot bend for life, life will break us. And that would be a waste, indeed.
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