a week's worth of notes

I can’t believe I haven’t put a post in for over a week now. I’m not entirely sure why either. The past 2 weeks have been busy, definitely, but I’m fighting some kind of writer’s block too. All the same, I’ve taken notes and in short form – here are some topics on my mind:

Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.

Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.

Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.

Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.

Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.

Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!

The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.

That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.

Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.

Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.

Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.

I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.