Tuesday, January 17, 2017

Physical Therapy that Wasn't

Trying to reboot as 2017 begins, I attempted physical therapy for my pinched spinal nerve. The therapy appointment lasted only 30 minutes as I discovered the horror that is electrical stimulation and heat on an inflamed spinal cord.

Diagnosed with radiculopathy, a pinched and inflamed nerve root in my lumbar column, the treatment is physical therapy, anti-inflammatory medications, and time. My therapy schedule was to be every other day for six weeks.

The first session began with the therapist measuring range of motion and asking the basic questions.

How long have I been in pain? Since birth.
No, how long has it been bad? Since birth.

Doctors can dismiss it and people assume I'm okay because I walk about and work, but I am always in severe pain. My lower back, shoulder, neck, hips… they all ache. The brachial-plexus injury at birth, the years in a back brace, and somehow doctors still don't believe what isn't in an x-ray or MRI. I hurt. A lot.

The therapist placed two patches with stimulators on my lower back. He said to let him know when I could feel the tingle. Then, I was supposed to recline on a bed. That didn't work. It hurt a lot, like my leg being pulled out of my hip socket. He decided to have me sit. Sitting for more than a few minutes starts to hurt, too, but I agreed.

It wasn't long before I was gripping my knees with white knuckles. The pain in my lower back increased dramatically. I felt sick. I started coughing, feeling nauseous. Nobody responded when I called for assistance. Nobody was around.

I removed the patches myself and walked to the front of the clinic. I said I was leaving.

I texted my wife to come pick me up, because there was no way I could drive the two miles back to our house.

The therapist met me in the lobby and offered several cups of cold water. I was shaking and sweating, feeling like I was about to pass out. This was not a good experience.

And so, the reboot for the new year isn't quite off to the start I had hoped.

People often assume my short temper and rushing about are from autism. Chronic pain is much harder to manage and deal with than people realize. As with migraines, which often follow the back, neck, and shoulder pain, there is no good "management" for pain that doesn't impair my mind. When the pain is reduced, I sleep. Pain leaves you exhausted, unable to tolerate the least of annoyances. When that pain recedes, sleep is almost instantaneous.

Many of the autistics I've met or interviewed have other chronic conditions. When you are uncomfortable, you are not going to be charming. Much of the time, I simply want to escape pain. I'm not socially skilled, but when my pain is at its worst, I really don't want to deal with interactions.

Physical therapy will have to wait. For now, time is the best treatment for my back issues.

Friday, December 2, 2016

How it feels to be diagnosed with autism late in life - The Guardian

I was in my late 30s. I still don't know if the diagnosis helped. Maybe it helps others. More often, it simply frustrates me to be so tense and anxious all the time. I would like the world to be quieter, calmer, more honest, more logical. Is that being "autistic" or simply being an intelligent introvert?

What I want, more than anything else, is a steady and secure job. A career. And it seems that is what the adults in this article also want.

'All my life suddenly made sense': how it feels to be diagnosed with autism late in life | Society | The Guardian: I meet Baron-Cohen in a crowded Starbucks near St Paul’s Cathedral in London, where he wryly comments on the mixture of chatter, clattering cups and muzak – “For a lot of autistic people, this would probably be hell” – and casts his mind back over the 35 years he has been thinking about and researching autism. He started working with six autistic children in a special unit in Barnet, north London, in 1982. Fifteen years later, he set up the Cambridge research centre; two years after that, in 1999, he opened a clinic dedicated to diagnosing autistic adults.

“There was a growing awareness that autism wasn’t just about kids,” he tells me. “I was receiving more and more emails saying, ‘My son’s an adult, but he’s never fitted in. Might he have autism?’ An adult couldn’t go to a child and adolescent clinic, so where were they meant to go? If they went to a learning disability clinic, and they had an IQ above 70, they’d be turned away. So these people were like a lost generation. That was a phrase I used a lot.”

Wednesday, November 9, 2016

Terrible, Horrible, No Good, Very Bad Year... BUT

In a few ways, 2016 has been (with a nod to a great children's book) a terrible, horrible, no good, very bad year for my wife and me. We have had medical issues, I have not had a full-time job, and a pair of accidents took our Jeep out of service.

It has also been one of the best years my wife and I have had.

The following is a lengthy post on the past and our future.

A friend and I had a polite debate on the topic of sponsors for "The Autistic Me" blog and my other creative projects. I generally believe that writers and other artists should find a market for their efforts and seek compensation accordingly. The idea of "donations" does not appeal to me.

"But you give to several organizations, including the performing arts," she insisted. "What is the difference?"

Much to my wife's chagrin, I do donate to theatrical organizations, local independent film projects, an autism cause or two, the humane society, and other non-profit groups. One reason I donate is to limit any reliance groups have on government or corporate donations. When a government "gives" money, it starts to set limits on what art someone can create. Understandable, since taxpayers place the arts well below the safety net programs. Even as an artist, I'd rather tax dollars feed people as opposed to giving away tickets to a play I've written.

We went back and forth, but my friend had an argument that I have to admit persuaded me to reconsider my position.

"You might not need anything, but what about the others in your life?"

"They don't need anything we can't provide," I answered.

"At least test the idea. You aren't out anything if nobody clicks to sponsor and you might find you can do a lot of good with even a little."

For nearly two years, I have not posted on some of the big changes in our lives. My wife and I are, believe it or not, relatively private people content to live quietly in the exurbs. We don't seek attention and my lack of self-promotional skills probably hurts my career.

All my creative works have languished while we dealt with personal matters. That's been difficult, but it was the consequence of choices I'd make again. Likewise, I'd probably make the same choice to invest time, energy, and money on an advanced degree — because I believed the degree would improve our security in the long term.

Here is the "Big Reveal" in this narrative.

Since October 2015, my wife and I have been foster parents. Though I will not discuss the children at this time, understand that being foster parents was a choice. We have chosen to do without some things and to rearrange our lives because we wanted to make a difference and help some children. It was also a selfish choice, in that we were unable to start a family. Becoming foster parents has allowed us to share what we do have with children who needed a safe, stable, secure environment.

So, now you know. I haven't been blogging and I haven't been traveling the world looking for work because my wife and I are spending a lot of time tending to the needs of our foster children. This limited, at least temporarily, where and when I could work. It meant we couldn't move, either, because we care about these children. We want to be the best foster parents, the best parents, we can be for the little ones in our care.

Earlier this year, my wife had cancer surgery (and radiation treatment). We expected a minor thyroid surgery, not aggressive cancer. By the time the cancer was discovered and surgery scheduled, we were already foster parents. The week the children had to spend away from us was lousy: the house felt empty without them.

Also before we became foster parents, I had already enrolled in a Master of Fine Arts program in an attempt to reboot my academic career. The degree has required more time (and money) than we anticipated. The commuting to and from the city, the equipment required for projects, and the time needed for creating / editing video projects has been overwhelming.

I've had to take side jobs. I worked at a garden shop for the last few months. Yes, with my Ph.D. and an MFA nearing completion, I've been moving plants, pulling weeds, and shoveling dirt. Unable to find academic work nearby or any other employment, I accepted the generosity of the shop owners so I could earn some money while working on the MFA.

By the time I would get home from eight hours of hard labor, I could barely move. But, it was/is a good job and is close to our house. Now, I've had to put that job on hold and will also have to miss the last few weeks of class. I need a minor surgery related to my anemia. It's a minor thing, but the timing is horrible.

This terrible, horrible, no good, very bad year has been wonderful. When we have some clarity on the status of the children, I hope to write about how hard it was (is) for me to be the parent I want to be. Children are everything my personality and mind avoid: noisy, disruptive, unscheduled, disorganized, and so much more. And I would never trade the experience for anything else.

If I am able to earn a bit more, I've considered a podcast version of "The Autistic Me." And additional funds would mean I don't need to work at 1:55 a.m. (right now) to finish a freelance column. Maybe people would like more posts to this blog. Maybe a podcast would be a good idea. Either way, it is difficult to set aside as much time as I have tonight for this post.

The idea of a podcast does appeal to me. I could record weekly and post to a feed. Maybe there's a way to have an "Autistic Me" show, with guests and scheduled topics. I have no idea. I'm doing podcasts for a class I am teaching part-time and the format seems to work well.

Even this blog, as simple as it is, takes a lot out of me. I'm not complaining, though. When I do post to the blog, people respond positively.

This year, I haven't been able to donate to many groups or causes. Our foster children, and the groups helping other children stuck in the system, have been our priority. I feel badly for curtailing my own activism and donations, but it was the right decision until I have more security.

If you would like to sponsor this blog, and potentially a podcast format, you can click on the link to PayPal. If you would rather do something more directly for the children, I am providing a link for that, too. As I stated previously, right now I do not wish to disclose much about the children or our time with them. They deserve privacy, too.

Sponsor The Autistic Me. Click Here.

Mario Lemieux Foundation: Austin's Playroom Project