080921b

I had heart trouble and our credit score dropped if I had died...

050121c

 

Self-management for people with SCI: Welp, pleased to learn that I  haven't done every single one of these. I am learning something for myself. If only, so far, the impetus to set additional health goals.

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.

091020d

 

Life On Wheels

 

alone in the house

I felt less vulnerable 

walking home at 5

082120b

 

going up 

the slick ramp in a drizzle 

I think I can

071220b

After the Accident

the terrible hours of the night

awake in hospital

paralyzed, alone

counting ceiling tiles

again and again

never getting the same answer twice

031020

my caregiver called me early this morning to tell me that she was going to be late because she had forgotten her phone. Just think about that for a minute. A phone that you carry with you? The need to always be in contact with people? She is old enough to remember when things were different, but my children are not. I remember waiting by a street light for 2 hours because my father forgot to come get me. But I also remember taking a long walk with some other people, none of whom were holding carcinogenic boxes to their ears and talking to other people in other places. I know. Old people talking about boring things. Good thing we have phones so we can find something interesting to do, even if it is just playing solitaire. Don't get me wrong, I am using my phone right now as an alternative to just lying in bed awake. But I like going places without it. Smell the flowers, and all that stuff.

121019

Day 6 in the hospital. I will probably be moved today from the ICU to a regular floor. One step closer to going home. All of these nurses are very good, and in this part of the hospital they have enough time to take good care of their patients. They have only two or three patients, plus all the paperwork! On the floor most nurses have eight or nine patients, which I know from experience of the patient side of the relationship is far too much.

I am still getting better, and have not yet run out of reading material. Like that would ever happen.

100319b

When medical people order things for you without even telling you they are going to, this is annoying. When they are things you don't want, for reasons you could have given them, had they asked, it is very annoying. When it is an attempt to deal with equipment they provided, which has been malfunctioning for weeks because it is exceedingly poorly designed (something their service personnel admit to), well, it goes beyond very annoying.

111218c

This will only be useful to people in or near Tuscaloosa, but if that is you, please read on.

I have two pieces of accessible equipment that I no longer use and wants to give away.


1. A power wheelchair. This chair works and it has a battery charger. It's only real problem is that when you take your hand off the joystick it doesn't stop on a dime like it used to. It rolls a few inches and then stops.

2. A shower chair. The only real problem with this chair is that the armrest on the left side doesn't latch very well. I don't think it's dangerous, I used it that way for a year, but you do have to be a little careful if you pull up on that arm of the chair.

I have both of these at my house, and anyone is welcome to come get them. Call or text first: 205-246-9346, or email: jopnquog@gmail.com.

If you want this for someone in your family, or someone you know, or an agency or organization that gives or lends out handicapped equipment, then this is for you!

David

110618d

Worked all day ferrying voters to the polls. Use my wheelchair van to carry five disabled voters today. That took until 4:30 in the afternoon.

071418b

after the rain
the ground squelches for days
under my wheels

021518c

cough and cough
but the crud won't move
crippled lungs

073017

the little cat
she's half fur
no heavier than a loaf of bread
I am the only one
who can't pet her and she's my cat
too shy to come to me
trapped in this fucking bed

071217

mint strays from its bed
bruised by wheels
it rewards the garden visitor
with the smell
of chewing gum

111116

stuck in bed again
banned from the freedom
of the wheelchair

102616b

ice crystals crackle
as the loose boards shift
low morning sun
Christmas outing in the chair
shears the bonds of frost

Hotel Review: C+

Hotel Review

Courtyard Marriott Chevy Chase
just outside the District of Columbia

Score: C+ (79%)

Dates I stayed: Nov. 23-30, 2013

Reservations made by Able to Travel, which is affiliated with the United Spinal Association

So I'm a quadriplegic, & when I travel I have specific requirements, of which the most important are a roll-in shower & a roll-under bed. My ride is a Permobil power wheelchair, and out of it there's little I can do. We travel with a portable battery-powered lift called a Trixie Lift, chargers & other small essentials, and a shower chair, the purpose of which is obvious. I used to fill ½ a suitcase. Now it's two, plus lift & chair.

We learned long ago that making our own reservations led to us getting fucked by brainless & uncaring hotel staff 3 times out of 4. This was actually the first time Able to Travel didn't come through with an A+ experience. And I think they might've been lied to.

We arrived about 11:30 pm after a 14-hour drive. My wife used to drive 2-3 hours out of each long road trip. Now it's all on her. One of many clues to how lucky I am. I'd called from the road and sure enough the reserved room really had been saved for us. I don't know what Mary at Able to Travel tells reservation clerks. Maybe how many barrels of cement their next of kin will have to find if they want the whole body to be buried in one place. (Just kidding, Mary, please put down that knife & back away slowly.) My wife said “Roll-in shower and roll-under bed, right?” “They said they'd have that installed by now,” the clerk said, risking taking one for the team. “It's been delivered....” So we go up to the room, and sure enough, we have a platform bed. The Trixie Lift is a long-egged feller, and the legs go under the bed. If not, it's throw me or drop me. And that's going the easy way, getting into bed. Or, that would be the case, but we brought bed lifts. These are stout plastic flat-topped pyramids about a foot high. Drag the mattress & box springs a foot to the side & shove a bed lift under each exposed corner. Then laugh at the platform. The first time we needed a bed lift we didn't have one. Luckily we were visiting my dad. He lent us two cinder blocks. Anyway, the bed in the CMCC wheelchair room was on a platform, & we were damn lucky to have bed lifts.

Otherwise the place was great, except for the non-accessible doors to the back parking lot, which was the only place a wheelchair van fit. Also, the bathroom had no heat lamp. Did I mention that quads have internal thermometers for shit? My body thinks it is ALWAYS COLD. Sweat's rolling down my face and I'm still shivering. So yeah, a heat lamp helps. C+. The large bathroom & roll-in shower are nice, but not nice enough.

David C. Kopaska-Merkel

quadriplegia and professional employment

I just sent this letter to one of the organizers of a conference that I will attend next month. I believe that people planning conferences simply don't think about accessibility or don't understand what it involves. They deserve to be chastised, perhaps, but I prefer to enlighten.

I am well aware that the hotel connected to the conference center would be the most convenient for access to the meeting. I would stay there if I could. Unfortunately, the Americans with Disabilities Act requires accessible rooms without defining them very carefully. Most hotels that have accessible rooms have rooms that are accessible to paraplegics, people who can get in and out of their wheelchairs without assistance. Only some hotels (the Microtel chain is one good example; most of their motels qualify) have rooms that are accessible to a quadriplegic. I basically need two features, in addition to a sufficient amount of space. I need a shower with no lip, so that a wheelchair can roll into it, and a bed that is up on legs instead of a pedestal (box). This allows my portable lift to roll right up to the bed where I can be swung into or out of bed safely. This may be a lot more information than you wanted. However, if you are ever involved in the decision about a conference hotel, this should be a consideration. Improved emergency room and rehab technology over the past couple of decades means that more and more people are surviving with severe injuries. Many of these people are still able to function in the workplace and therefore attend conferences.