Friday, April 12, 2013

Valley of the Dolls

This always happens.

We go home today. I am tired. I can't sleep. After 8 hotel beds, 6 lectures, 12 individual consultations and 12 days on the road along with countless hours of driving countless miles, I'm wiped. Yesterday crawling through traffic to get part way home, I crashed. When we got to the hotel it was my job to order in supper. It took three tries to get the number right, I accidentally called a woman who told me that if I couldn't dial a phone I shouldn't be allowed to use one. Um, sorry.

When I get tired like this, my disability moves much more to the foreground. Getting out of the car last night was difficult and the pain, which is always low level, turns up a notch. I know I am a wheelchair user and I know that I have need of a variety of adaptive devices, but it's only when exhaustion adds to the mix that I truly feel the extent of my disability. Joe does an amazing job of mitigating a lot of what I'd have to deal with, he is an expert in how to set things up in hotel room after hotel room to make things easier and more accessible for me. But when fatigue crashes in, nothing much can be done.

The transfer from the car to my chair last night, as I've mentioned, was very difficult and quite painful. I caught my face reflected in the car window as I turned around to sit in my chair and I looked really, really old. I noticed someone notice me and I knew what they saw and knew that they didn't know what they saw. They saw a tottering old man, moving with difficulty and moving with some pain. That's true. But what they really saw was a fellow who had worked a gruelling schedule, A fellow who, only hours before, was giving an animated lecture to an audience who were asking hard questions and engaging in good discussion. A fellow who was simply bushed.

I got into bed long before Joe did. I read maybe ten pages of my book and the light went off. I heard Joe moving around, checking out my Facebook page, answering emails, cursing under his breath the fact that the Internet here is lousy. I don't know what time he crawled into bed. I was long asleep by then. 

The night before going home I always have one of those sleeps that is interrupted by the excitement of the day yet to come. I love what I do and I love the opportunity to do it, but I also love going home. This morning I'll have to take my first pain pill of the trip, I only need them when I'm really tired, and I'm really tired.

Disability is an interesting thing to experience isn't it? It can be ever present but seldom noticed, but it can also rear it's head and say 'Yo, Dave, remember me?' 

Yeah, I remember.


Susan said...

I hope you get to stay in your robe all weekend and sleep every time you have the inclination. Welcome home, guys...

Anonymous said...

Dear Dave,

have you by any chance ever read about the "Spoon theory" its a way a woman come up with to describe the exhaustion of living with a chronic diesease to her able-bodied friend.

Here is the link
it is worth reading it.

I wish you a truly restful weekend

Shan said...

I'm sorry to say this, but that schedule is a pretty grueling pace for people your age! If you were sleeping in your own bed at night it would be different. Take care of yourselves and ENJOY your weekend of rest!

wendy said...

Time to rest, sleep in your own bed and spend the day in your pyjamas, if you're so inclined.

Josiah said...

This. So much this. That is so familiar.

Sometimes it fades into the background and I think I'm imagining it. And then it suddenly comes and makes its presence known.

theknapper said...

Have a restful and re energizing weekend!!!

Mike Allen said...

I know what you mean about disabilities getting foregrounded and backgrounded. Some times it just turns up the volume so loud that you can hardly hear the radio. I find that the behavior of others really plays a crucial role during a crisis. If the disability is foregrounded, then usually it's because someone else hasn't been careful enough, possibly even negligent. It's important to surround your person with people who *actually* have your back.

Eileen said...

Good job done, Dave and Joe. Now rest and re energise for the next challenge.
I know what you mean by the low level pain always being there and then the debilitating pain that comes with exhaustion. I hope you've topped up body's fuel.