It’s 1:56 a.m. Me and my steroids are wide awake, so I might as well see what comes out. I brought my computer into the bedroom for this just circumstance.
Here are things I’ve been thinking but not writing because, ….. well, most of it is bad, bad, bad:
I felt better on Thursday because I’d walked Ralphie almost a mile. I found the neuropathy had progressed to above my knees and suddenly my upper and lower legs once again spoke the same language. The subtle flailing (an oxymoron) was gone and they moved me along just fine. But the neuropathy is now all the way up my legs and butt. More disease progression. The next day I tried to do yoga, which can be the lamest of all activities if you want it to be, which I did want. But I could not balance, nearly rolled an ankle and found after 8 minutes I could do no more and was so discouraged. Yet the next day I think my knees were happy they’d been completely bent. So Child’s pose is on tomorrow’s agenda.
When I hung up on Friday afternoon from talking to nurse Karolyn she said, OK so you’re good for the weekend, we’ll talk next week about these other things and what I find out about the spinal tap. I thought I was OK, but I still had 6 days to wait and by that night I realized that I am still in the process of actually dying until they start the therapy on Thursday. I was stupid enough to actually say to Fletcher something like, If I make it. What Do You Mean, he said in a voice I’ve never heard as he sat across from me with a look on his face I’ve never seen that demanded a response so I kept saying the stupid thing, which was that I felt like I am losing it more each day and might not make it until Thursday. I actually thought that at the time but what a stupid thing to say. I am an idiot.
Here are other stupid things I thought but thankfully did not say: Last week, when I cut Fletcher’s hair, would that be the last time I do that? I cleaned the bathroom on Saturday and cut my toe nails short today because you can’t die with either of those things unaddressed. Will scones be the last thing I baked? Now Fletcher knows how to make dal because I coached him from a chair.
The pandemic I was so happy would keep traffic down is turning out to be a real dick. Instead of distracting me it has just piled on and on, making me think that if my treatment gets pushed back this condition will continue to progress and I will just continue to die.
So that’s where my head has been for the past few days. But I decided this afternoon that even though the untreated prognosis for this condition is bad, I’m probably not going to die before I start treatment, even if it were to get pushed back. I think Karolyn would have thought to mention it. Again, I am an idiot and have decided that for the next 3 days I just need to meditate for a few hours each day and binge watch TV for the rest of the time. My meditation focus should probably be self-compassion, in acknowledgement that I should stop calling myself an idiot. Maybe I’ll make a good playlist for back and forth to treatment. I’ve learned that I am not as patient as I thought myself to be.
I imagine my math PhDs working on my treatment plan and hope they are terrifically, stereotypically nerdy social distancers. Will my techs have childcare issues once the schools close on Monday? Will the woman who invoked Jesus as she Chlorox-wiped the pen she tried to hand me (I’d brought my own) be there on Thursday to wipe everything down with Jesus and bleach? I’ve decided it will be better to sit in the fucking wheel chair if I need to than to fall down or make Fletcher hold me up. He’s already holding me up so much as it is.