092223b

TV paraplegics, full of anger
minds on what you've lost
I get that, it's really hard
and doesn't stop, but also fuck you
look at what you've got
quit your whining
there's always someone
worse off
always

010922c

Rolling down the highway
Eyes shut for a NY minute
Woke into a dream
That’s lasted nearly half a lifetime
Changes had to be made
Patience with myself
With others
New limits to set
And overcome
Or not
Finding things I like or don’t
Rubbing shoulders with Death
So often I almost know them
But there are perks:
New people, new places
A thousand open doors
And this new chair
0 to 15 in two seconds
I’m flying

112621d

My take on ramp vs lift in wheelchair vans or at houses.

When I first got hurt, I didn't know. I fault the rehab hospital for not discussing pros and cons with me. To be fair, I should have asked a lot more questions. Be that as it may, these are my takes after 18 years.

VANS: lifts are just not a good idea if you are using a power wheelchair. They are prone to electrical and hydraulic malfunctions, which can be very inconvenient if you are in the van or not at home. In the US, it's hard to find a wheelchair-ready vehicle to get you home. In Tuscaloosa, one of the ambulance companies has two wheelchair vans. For a six-county area. Boston has wheelchair taxis. These are common in larger cities, and even some small towns, in western Europe, but they are rare in the US. And not just anyone can maintain or repair accessible equipment. If you can find qualified repair people at all, keeping a lift working (I'm looking at you, Braun and Ricon) is going to cost a lot. But the biggest problem is the danger. What do you do if you get stuck in the van when it's 98F and sunny? By contrast, a ramp is hardly capable of breaking down. For me, this trumps every other consideration.

HOMES: Outdoor lifts can be reliable (my Wheel-o-vator worked well for about 12 years). However, finding people who can repair such things can be difficult. And even though mine worked well for a long time, when it did need work, we found that bad choices had been made. For instance, the outlet where the motor plugged in was exposed to the elements. We were lucky it lasted as long as it did. A wooden ramp, in a hot and humid climate will need to be replaced after 10-15 years. However, this is cheaper and easier than replacing a lift. The ramp will work even if the power's out. The surface gets slick when it's wet, but some sand mixed in paint solves this problem.

If at all possible, you should have two exits from your home, in case of fire. Unless your living space is far above ground level, this is most easily done with two ramps.

112121d

Mini-review of a small pen

Who would have imagined that a plastic "Y", designed for use by people with arthritis, would be the greatest thing since sliced bread for quadriplegics. Maybe that's a slight exaggeration, but hear me out. I need both hands to sign my name with a straight pen, which is quite frustrating. This pen (see below) slips over my forefinger. I can use it even though I have no grip at all. You don't need finger mobility, but you do need to be able to use your arms. I've experimented with other pens with a narrower "V" and they did not work for me. The brand I use is called PenAgain. It is possible to get an employer (I did) or other entity to pay for them.

I previously used a cuff, which wraps around my hand and is held in place with velcro. A pen or pencil slides into a long narrow pocket, such that the pen sticks out between thumb and forefinger, but perpendicular to your forefinger, or the other way, past your pinky and at right angles to it. In practice, the cuff loosens and rotates unhelpfully around your hand. It works, but not well. Also I could not hold my hand in what felt like a natural position.

The pens are not perfect. The ink cartridges don't last long, and the separate piece that covers or uncovers the pen tip breaks off easily. And they're not particularly cheap. Fifteen years ago they cost about $3.50.

111321c

I was inspired recently to write some reviews of adaptive equipment, so here goes.

Shortly after my accident (2003; I'm a quad) I was given a cuff. It wraps around the middle of my hand, crossing palm and back, and has a slot for the back end of a bent spoon or fork. The business end of the utensil protrudes between thumb and forefinger at a very convenient angle. I used cuffs for years, but they cost more than I think they should, and I discovered that I don't need them. I still prefer bent cutlery, but I wedge the utensils between forefinger and middle finger. I hold them in position with my thumb. I can eat nearly as easily with unbent spoons. Straight forks are only easy with soft food. Considering that the cuffs cost $13 plus shipping in 2003, I'm not going back.

101621e

wounds closing after three long years I lower my guard

100621

caregivers peel away they can't get no more the way life is when you won't pay a living wage ain't what they want but what they need it leaves me having to do for myself

082321

Wheelchair of Cthulhu

In each person a spinal cord resides
And in strange eons even Death may ride

080621

Wound Dr. today. Always stressful. This is when I find out whether I'm still making progress or backsliding. Generally I see him every 2 weeks.

080421

five days of good health what shall I accomplish today?

071521

the spongy yard
follows me inside
easy to track

071121c

sitting up takes more energy than you'd think wheelchair

051821b

 

No matter how you say it, these quad feet only elevate when I'm stuck in bed.

040121

 

yay

home from hospital

after one night

021221b

 

Sans Wheelchair

 

dogs under the deck

a kid buried to the neck

unperturbed, he climbs up

takes his dogs away

 

grilling burgers on the step

neighbors we seem to know

a dream without a chair

I'm walking, but

I've got nowhere to go

020421

 

This is a dream I had last night. I don't usually remember much from a dream, but for some reason this one was an exception. Does that mean something? I doubt it.

For those of you who don't know, I'm a quadriplegic and I can't drive. So any place I can't roll to I need a driver for. I've been working from home since March, but I do have an office, which happens to be 2.2 miles west northwest of my house.

 

At the beginning of the dream one of my caregivers, call her A, was driving me to work. I don't know why we were going there late at night, but there you go. She hadn't been there with me in a while and missed the entrance to the parking lot we use, so we drove past the building and parked on the other side. I noticed that the whole front of the building was covered with a wire fence, the kind they use when they're working up above. That fence does not appear again in this story. So after we parked we were suddenly in the building that has my office in it. Except it wasn't the real building, and it wasn't the other building, it wasn't any real building at all. I don't know what I was doing there, but I was very busy. After a while I went back in my office for some reason and I noticed it was 130 in the morning. I said "A, look at the time! We have to go." Outside my office is a lab, but this wasn't my real office and it wasn't the real lab. Also, the agency head was there in the middle of the night, perhaps doing some last-minute science stuff for a paper (we are geologists). I asked him if he wanted the lights left on, and he said yes. He specified which ones. We headed towards the lobby, but just then somebody else I work with (not, I think, a real person) came in. He asked if we wanted the lights on. We did. God knows what the stuff about the lights was from.

At this point we were suddenly walking down the sidewalk towards the place where we usually park. Apparently both of us forgot that the we didn't leave the car there this time. Back to the other side of the building, and she had parked right next to a dumpster or corrugated metal shed or something, so close to it that the front passenger door couldn't be opened. I should mention that as far as I'm aware I was not in a wheelchair in any part of the story.

For some reason we had to walk up the roof of the shed? Storage building? At the very same moment a rather attractive Asian woman was walking down. She seemed hesitant to come too close, perhaps because it was almost 2 in the morning, but eventually we traded places. Then I looked down at the roof of the van and I guess that's how I got in, because I sure couldn't open the door.

The end.

Then I woke up. And for a second I wasn't sure how I got from the van to my bed.

I'm sorry to have subjected you to this narrative, but I did warn you at the beginning that it was about a dream.

122420

 

My office is also our library, which makes it feel very welcoming. It is also one of the smallest rooms in the house, which keeps it warmer in the winter than any of the others. It has a relatively large south-facing window — the icing on the cake. I didn't appreciate how wonderful this room is before my spinal-cord injury. Yet another benefit of the injury. Today I plan to do some geology work, and then get back to laying out Dreams and Nightmares 117.  Then get back to reading Boroson's "The Girl with No Face."

122120

 

 white-sky day

waiting for the sun promised

by the weather app

121020

 

A disturbing hangover from the weekend's illness. I have what's called an inspirometer. You suck as hard as you can on the tube and you thereby pull up a blue plug as high as you can. The scale goes from 0 to 4000 (it's otherwise not labeled). On a good day I can pull 2000. On a bad day, 1500. But this week: 1500 is my maximum. Two or three days without exercising my lungs and this is what I get?! So far nothing else seems to be wrong.

112120b

 

wheels spin

 

lurching from gravel

to grass

 

November blooms of ginger

lantana, hyssop, and camellia

born from the runaway climate