061822

SFPA's Discord server is seeing a lot of good conversations and networking. If you're a member you should check it out.

Pop sockets--the greatest thing since sliced bread? My fingers won't move much, hardly at all really. For years the most important thing about a cell phone was its width. This is because I have no grip, and narrow things slip right out of my hands. A phone had to be wider than the gap between my thumb and forefinger so that tension in my hand would put a little pressure on the phone. No longer true! I'm liberated, and a phone can be as skinny as it wants to be. I slide my thumb and forefinger onto the pop socket as far as they'll go, and Bob's your uncle. So, not designed for disabled folks, AFAIK, but very handy.

Another thing about the way my hands [don't] work now. The three most important things about a drinking glass are (1) it must be lightweight, (2) wide enough to put tension on my fingers and (3) have an easy-to-grip surface. None of those things made a particle of difference to me in the before times. Well, there you have it, the latest in my irregular series about disability matters.

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

121921c

Exercise for Quads

Aerobics are out. I might be able to swing my arms hard enough and for long enough to get out of breath, but I don't want to imperil my rotator cuffs by using them as hard as would be required. I might need them to push a manual chair when my power chair goes down. So I've found several low-stress exercises that build strength. The simplest is to hold my arms out straight to the sides at shoulder height. I started doing that for one minute at a time, and have worked up to 7.5 minutes. Some days I do it twice. My ultimate goal is 10 minutes, but I seem to have reached a plateau. The second exercise is the same, but I do it wearing wrist weights. These velcro on, so I can put them on and take them off without undoing the velcro. I have some that weigh 3 pounds, and some that weigh 10 (~1.3 and 4.5 kg). I cannot yet hold my arms up for very long wearing these. Less effective are some isometric exercises that involve pushing or pulling on parts of my chair. One can also loop canvas or elastic straps over doorknobs, but it's inconvenient to either leave these in place or to store them any place I can reach. So I have a strap but don't use it.

082321

Wheelchair of Cthulhu

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

120918b

Phantoms

A quad’s troubled by them;

From the terra incognita below my nipples,

Reliable reports come in from my stomach:

Hunger, repletion, nausea;

All else is fake news.

When I bump my knee,

Or seem to,

There is an ache,

Almost a sharp pain,

Where kneecap resides,

Doctor says this heralds nothing,

Much less the return of true sensation.

Sometimes my nether limbs

Send reports of movement;

All false,

As my eyes inform me.

Everything,

These 14 post-traumatic years:

Lies, lies, lies,

Unpleasant ones at that,

Pain or discomfort,

Never a good feeling.

But finally,

What I’ve been dreaming of

Has come to pass:

Stirrings from...down there,

The feeling a man gets,

As he begins to rise,

Faint, but exhilarating,

Unreal, but I don’t care.

Actually, I do,

This long-awaited blessing

Brings hope,

And now I wonder--

What stumbles me-ward

From that undiscovered country?

111718

sun shines on the south window
the tropical plants long for home
and to escape their pots
the refugee lizard
longs for summer

as do I
trapped in a crippled body
that is always cold

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

122917b

Writing About Disability

I'm a quadriplegic. Sometimes we receive phantom sensations from parts of our bodies with which we can no longer communicate. These are usually unpleasant, but not always. I'm working on a poem about it. I've written about my disability before in this blog, but I think I'm reaching a new level in expressing myself about it. It's exciting. I'm going to submit it to New Mobility magazine.

122317b

A dream

A real one, not a poem*

Last night I dreamed that my wife brought me a snack in bed. I dreamed that I ate part of it, but it was going be hard to eat the sandwich while lying flat. So I woke her up and asked her if she would raise up the head end of the bed (there was no controller within my reach). She pointed out that I wasn't in a hospital bed , and asked if I wanted extra pillows. Then I stayed awake for a good while worrying about whether I would knock the sandwich on the floor if I didn't eat it (it was on my chest) and whether I could try to eat it while lying completely flat, and whether if I just left it there till morning it would spoil. Later I fell asleep and it wasn't until I woke up again, at the usual time, that I realized there was no sandwich. There never had been.

These dreams, from which I awaken thinking they were real, started a few years ago. When I was in the hospital for 2 months, and came home taking some additional medications. Is that the cause? Hallucinations, disorientation, and confusion seem like unsurprising side effects of drug interactions (I take about 10 different prescription drugs). Something else is different about these dreams. In them, I am disabled (as irl), and they take place in something like the real world. Most of my dreams occur in settings that seem ordinary at first, but aren't. And in most of them, I'm my old self. These dreams are more amusing than disturbing, so far, but I guess that could change.

I can only remember having a dream that I confused with reality one time (before the last few years). It happened decades ago. I dreamed that single-edge razor blades with edges that were only one molecule thick had been invented. I woke up thinking that was a really cool thing, and it took at least five or 10 minutes to realize that it was just a dream loosely based on a story by Larry Niven.


*This probably makes a lot more sense if you know I am a quadriplegic.

050817

14 Years On

the chill of a severed spine

the brain doesn’t know

what either hand is doing

fucker assumes I’m cold

so cold

031717c

Since ending up in a wheelchair, I still look for coins on the ground. "There's a penny," I say. Not because picking them up is good luck, but because that's what you do. I don't look for shells on the beach, because wheels gotta roll. I don't dwell on what is gone. Live for today is the only law.

021717b

at pavement's edge
finger taps and joystick clicks
as my gaze moves on

011317b

My daughter dreamed that my legs had somehow gotten left behind, but my feet were still where they belonged, on my foot rests. And she wondered how my feet knew to stay there. In the words of Mott the Hoople, I have intelligence in my feet. Too bad I couldn't apply that to some useful purpose. For instance, if they could kick somebody for me, I would have perfect deniability.

"Honest, officer. It was a muscle spasm!" *Apologetic grin*

070116b

White threads



These rigid fingers don't even twitch
Two hands work together
Pluck a single thread
That has wormed its way
Onto my green slacks.

I can hold one thing in my teeth
One in my two hands
But many in my heart