October 27th, 2013
Several weeks ago I had a miserable period of three days of not being able to get out of bed. The day before I had gone for a bike ride. A rather easy bike ride in the scheme of things. Coincidence, I felt nearly positive. It had to be the flu or something like that. A flu that had just happened to hit me the day after I went out riding. It certainly FELT like the flu. Achy joints, sore muscles, inability it stay awake. Hill and I had plans to go to Vermont to catch the height of the fall, but my 3 days in bed were serious enough, that is to say that I became so totally useless that, the idea of planning a trip when we didn’t know how I’d be feeling seemed crazy. To be away from hospice care, to be away from the comforts of our own home. Not a great idea.
A week later I stepped out onto the stoop on the way down to the shop for the first time in a while, and there was something about the air.. it was crisp and cool. It reminded me that it was fall.. It reminded me that I probably had just one last chance to see Vermont in the fall. I was feeling fine! So why not. By then of course, Hill was up to her ears in meetings and couldn’t come with me. She cleared me to go on my own, though, and I did. A spontaneous run up to Vermont. Just two nights. Zoom. Leaving town was a comedy of errors. One missed train after another. Finally settling for a rental car from Stamford at twice the price of the the rental from New Haven, simply to get on the road!! And still, I didn’t make it to my brother’s place until it was time to make them some dinner, when my intention had been to arrive at around noon. It wasn’t much of a visit.. just one full day there.. but enough to remember Vermont fall. A favorite place and time of year for me for so many years. While I was there I received an unexpected and beautiful piece of correspondence. Encouraged undoubtedly by a mutual friend, and yet still wildly special. I am very seldom star struck, but this stopped me in my tracks.
At any rate. That knocked me off my feet, and off to bed I went.
I hadn’t even taken a mountain bike with me to Vermont.. Somewhere in the back of my head I was a little gun shy about the notion of hopping back on a bike after ending up in bed for three days afterwards the last time. Was still feeling fairly sure that it was a coincidence, but wasn’t eager to test it. On the way back to the city the next day I checked in with Hill on the phone.. At some point in the conversation she said, “you want to go riding this weekend?” I realized, first, that I had created a monster.. that she had the bug.. and second, that at some point, I was going to have to test this thing.. was going to have to PROVE that it had been a coincidence, and that riding was still going to be lots of fun for me this fall.
So Hill and I planned a little ride. On Saturday we piled the bikes into the zippycar and went up to sprain ridge park. Climbing onto the bike felt amazing. I ALWAYS feel good when I climb on that thing. Amazing. Like it was made for me. We had a wonderful fall ride. Dry and crisp. Hill rode very well. Her second crack at sprain, and she was much less tentative. Rolling right into and over things. I was suitably impressed. After about an hour and 15 we had worked our way back to the parking lot, and just to be on the careful side I called it a ride. It had been mellow and slow. I had never really exerted myself. Nothing that my body could possibly complain about the next day. We packed back in the car and got back to the city in plenty of time to return it. The rest of the day was mellow and productive. I cleaned the shop! Made it immaculate. The first step towards launching into whatever is to come next. Ate dinner and went off to bed.
I woke up on Sunday morning, and low and behold!!! FELT FINE!!!!! NO PROBLEMO!!! CURSE BROKEN!! This was very good news, of course. This meant that it had NOT been the riding before.. it HAD been some coincidental nonsense.. flu.. cancer.. something! But not bike riding. I was so excited. Called my brother to let him know.. He’s nursing a torn up shoulder that’s going to keep him off a mountain bike until something is done about it, but he feigned some excitement for me. Watched some football with Special Ed.. Cooked some dinner.. By the time I was done cooking, though, I realized that I was really pretty tired, and would sort of rather head off to bed, than stick around for the party to begin.
Wouldn’t I like a bowl of my stew before I left?
No thank you, I wasn’t really all that hungry.. just wanted to get a nice early night, and tackle a few things in the shop the next day.
So off I went. Got to bed nice and early.
Monday morning, Hill brought me coffee in bed. It was about 8:30. It took me a moment to sit up.. my body was aching a bit. I got propped up though and opened my laptop. Flipped to email. And then dozed off while I pretended to drink coffee and read.. My head nodding.. finally giving in, but masterfully not spilling my coffee..
“You look like maybe you’re sleeping”
“Maybe you should put your coffee down and just go back to bed for a while.”
I tried getting through another email or two, but it was impossible. Heavy eyelids winning. So I put down my coffee. Put down the lap top. Snuggled back into the covers, and went back to sleep for a little while. When I woke up it was 2 in the afternoon!! I wasn’t done yet, though.. I found some sort of movie to watch, but mostly slept through it. When it was done I allowed myself to fall well and truly back to sleep. When I woke up it was dark.. Hill was sitting across the room (she had been gone at a meeting when I went to sleep), in a little pool of light working at her computer. I had no idea what time or day it was. Complete disorientation. “It’s 8 o’clock baby, would you like to think about some dinner?” Holy SHIT! How had an entire day gone by!? We ate some food and went back to bed. I didn’t wake up the next day until 10:00.
Anyway. The short version is that I ended up spending my three days in bed just like before. I just had a day of feeling fine first. It’s a little strange, but I’m afraid that the exertion of riding IS the culprit. Hard to believe.. (although, not hard for my hospice nurse to believe.. “You’re VERY sick, Ezra. I know that’s easy to forget because you’re so busy and active, but it’s the truth! It isn’t a surprise to ME that you go out on a crazy hard mountain bike ride and it tires your body out.” “But it wasn’t a crazy hard mountain bike ride.. it was eeeaaasyy.” “Not for a normal person it wouldn’t be.. And not for a very sick YOU it isn’t..” ) Oh. Ok. So that’s how it’s going to be.
This leaves me pretty depressed. Still in disbelief a little. Could it be a coincidence both times? I mean, if it was a coincidence this time, what was the culprit? Another flu? Why the day off in between? Why does it feel so GOOD to be on the bike if it’s wearing me out as much as it proves to be? A lot of it doesn’t makes sense to me (unless I remember that I’ve already outlived some expectations by 5 months or so!), but I’m definitely not jumping at the opportunity to test it again. I mean, maybe eventually… Clear out a few days, expect to be bedridden, and go for a ride. Three’s the charm, right?
Sorry. This has been a pretty long winded way of telling a pretty short story. Hard for me to even describe the place that I go during these three day periods. The depths of exhaustion. Unable to respond to email, unable to work on photos.. It’s not as though it’s nice time in bed for watching movies and cruising the internet.. I am without coherence when this happens. Can. Not. Function. Not a state that I’m eager to invite. Three days of it is too steep a price to pay for barely over an hour of very tame mountain biking.
It’s so hard to acknowledge that the disease is making these changes in me. It’s so discouraging. And yet, perfectly natural. Right? I mean.. To be expected. I DO have stage 4 fucking cancer. Whether I look like it or act like it apparently doesn’t change the fact. What a pisser.
Fast Boy Out.
(feeling fine today.. need to strike while the irons are hot.)