What a PAIN!

I don't talk about pain much -- I think it's off-putting, not something most people need to hear about or that I need to share. I don't need sympathy, and I know people have a hard time knowing what to say when presented with the reality. But I'll tell it here in this place, and those who don't care to hear about it can stop reading now.

I am always in pain. For some reason, the damaged nerves - in addition to sending random signals to the muscles in my legs and feet so that they are always moving, twitching, cramping - mistakenly send pain signals too. Sometimes my skin burns, as I imagine shingles would feel. Sometimes my muscles ache. Sometimes it's like having a vice on my feet and calves, getting tighter and tighter. Sometimes it's like pins and needles all up and down my legs. Sometimes it's all of the above or a combination of some. Whatever the pain du jour, it's always with me to some degree. On this cute little pain scale, below, I'd say I'm typically at the 4-6 level, sometimes creeping into 7-9. I don't know that I've ever hit 10, at least not with this iteration of pain.

I have gotten pretty good at powering through it and/or masking it. When I'm doing something fun, like singing in the choir or hanging out with friends, I can often forget about being in pain. That can come back to bite me if I overdo it - being on my feet a lot, walking or standing - but it's usually worth the trade-off. I've modified my life so that I don't do too many things in a day; if I do, the pain or the fatigue will catch up and level me. Life tends to become a smaller enterprise when chronic pain is a part of it.

Pain management has been mostly unsatisfactory for this problem. I've taken a variety of medications, tried acupuncture, meditation, a TENS unit, marijuana (now legal in Oregon and Washington). The pot and opioids can take the edge off, but they make me drowsy and render me ... well, not at my best. Like the little orange pain face, they make it "difficult to concentrate and may interfere with your ability to do certain normal activities." The quest continues for the magic combination.

I went in search of quotes about pain (because it's always a cool thing to add to a blog post, right?) and found a variety of thoughts, from sickly sweet inspirational ("Pain is a gift!") to downright depressing ("There are days I fucking hate everybody!"). This is the only one that resonated with me: 

Don’t Worry, I Won’t Get Far on Foot: Humor and Disability

I remember when I first saw John Callahan’s cartoons, back when I was able-bodied (or temporarily able, as some call it), I was shocked and appalled that someone would poke fun at disabled people. Of course, as I learned later, Callahan was a quadriplegic, the result of a drunk driving accident – so if anyone could poke fun, I guess he could. I suspect his sense of humor got him through some pretty horrific times. He became known world-wide and, though many of his cartoons were quite macabre and very edgy, I think he did a favor for disabled and non-disabled people alike  by finding humor in disability.

Sometimes my humor will have a bit of an edge to it, like when a sturdy young man was admiring how fast I could get around the store on my scooter. “I gotta get me one of those!” he said, innocently. I told him, with a smile, that I’d trade my scooter any day for a pair of legs that worked as well as his. He laughed uncomfortably, but I think he got it.

Humor - or just plain light-heartedness – initiated by a disabled person can put others at ease. It makes one more approachable. Many people don’t know how to interact with someone in a wheelchair or with a guide dog.  It’s an age-old notion that someone who is physically disabled is also mentally disabled – you’ll see waiters or clerks address the person who’s with the disabled one, expecting them to speak for her. 

Children are curious! 

Recently I was on my scooter in the grocery store; a young girl riding in a shopping cart asked her mom why I was on “that machine.” I could feel her mom tense up – I was obviously within ear shot and she seemed mortified that her daughter would ask the question (I don’t know why – but that’s another story). I quickly defused the situation by having a fun conversation with the little girl about my scooter (how convenient we were at eye-level!), about how my legs don’t work so well and it was hard for me to walk; she told me that she could run "really fast" and I told her we could have a race some time. Her mom looked so relieved. I often make jokes in elevators or other crowd situations, sometimes laughing at myself, sometimes just joking in general. I think it helps people to see me and not just a disabled person on a scooter (lightbulb moment just now!!!) 

One of my favorite activities is to take our dog Liza out for a “scoot.” She often runs in front of me and the scooter; it’s an unusual sight and pretty darn cute – I wish I had a dollar for each time someone has said, “Is she pulling you??!” The best part, though, is the number of people who pass by and smile or laugh or strike up a conversation. I love that Liza and I can bring a little joy to someone’s day.

Liza and me on a "scoot."

Callahan’s humor wasn’t everyone’s cup of tea - he probably generated more hate mail than any other cartoonist (except political ones).  "My only compass for whether I’ve gone too far is the reaction I get from people in wheelchairs, or with hooks for hands," Callahan said. "Like me, they are fed up with people who presume to speak for the disabled. All the pity and the patronizing. That’s what is truly detestable.”

According to that epitome of information resource, Wikipedia, Callahan found his humor and artwork therapeutic. I get that. It feels good to be able to laugh at myself with friends, to feel comfortable enough with my Self to crack a joke about my disability. It’s not a taboo subject anymore!

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[John Callahan was a fixture around Portland (ooo, bad choice of words!?); I'd often see him wheeling around downtown, talking to people. He died in 2010 of respiratory complications. To see an archive of his cartoons, visit the official Callahan page.]