We all make so many choices every day; we're not even aware of many of them. Some are obvious, like choosing what to eat for dinner, whether or not to exercise or which of two fabulous shirts to buy. Others are subtler: instantaneous decisions made all day long, like how to respond in conversation; what size bite to take of that scrumptious dessert; or whether or not to return that flirtatious glance.
As a person with a disability, decision-making is often about whether or not to move forward with something despite potential, and sometimes likely, consequences. Like anybody else, I occasionally find (or put) myself in situations in which I feel physically or emotionally vulnerable. A self-regulated negotiation takes place for decisions that are automatic for others. I want to do this, yet perhaps I should do that.
A person who is not in pain will wash his hands without giving it a second thought. For me, a self-proclaimed germ-aware person (I decided that “germaphobe” is too harsh), it’s a no-brainier that I'm going to clean myself. Simple enough? Not really. Extending my arms to the faucet means inviting radiating pain and touching water that might be too cold for my hands, which already feel frostbitten. Even when it's clear what I'm going to do, my brain shifts from autopilot to conscious awareness. Most of the time my thoughts express compassionate messages like, This tends to cause pain, but maybe this time it won't. I'm being careful, I'll be fine. Even if this does hurt, I'll take care of myself afterward. And then there are days when I think, I'm so tired of simple things increasing pain.
When I guard against increased pain by doing something like putting gloves on, it's a more straightforward process. I can take measures to protect myself from the cold and hyperalgesia with relative ease, and that's a positive feeling. Still, the cognitive part of my brain taps me on the shoulder and asks for a decision. How will I choose to respond to people's stares, remarks and questions about wearing gloves in 80-degree weather?
As a person with a disability, decision-making is often about whether or not to move forward with something despite potential, and sometimes likely, consequences. Like anybody else, I occasionally find (or put) myself in situations in which I feel physically or emotionally vulnerable. A self-regulated negotiation takes place for decisions that are automatic for others. I want to do this, yet perhaps I should do that.
A person who is not in pain will wash his hands without giving it a second thought. For me, a self-proclaimed germ-aware person (I decided that “germaphobe” is too harsh), it’s a no-brainier that I'm going to clean myself. Simple enough? Not really. Extending my arms to the faucet means inviting radiating pain and touching water that might be too cold for my hands, which already feel frostbitten. Even when it's clear what I'm going to do, my brain shifts from autopilot to conscious awareness. Most of the time my thoughts express compassionate messages like, This tends to cause pain, but maybe this time it won't. I'm being careful, I'll be fine. Even if this does hurt, I'll take care of myself afterward. And then there are days when I think, I'm so tired of simple things increasing pain.
When I guard against increased pain by doing something like putting gloves on, it's a more straightforward process. I can take measures to protect myself from the cold and hyperalgesia with relative ease, and that's a positive feeling. Still, the cognitive part of my brain taps me on the shoulder and asks for a decision. How will I choose to respond to people's stares, remarks and questions about wearing gloves in 80-degree weather?
Photo by Antony B Courtesy of Wikimedia Commons
For people dealing with pain, choices present on a continual basis. Here's a sampling of mine:
Recognizing that there's often a middle ground to these choices (I could use my cane during part of the event and fold it up after a while), decision-making is still involved.
So, what to do to avoid living in that tiresome “If...then” space? I believe that presuming safety and relying on our experience of self-care is the way to go. Caution is sometimes rational and even helpful, but if that was my default mode, I would rarely leave the house and I would never move my body. I wouldn't engage in conversation or take risks. I certainly wouldn't write.
I'm having trouble deciding how to conclude, so I'll just say this:
Being a positive thinker, my nature tends to err on the side of opportunity, and I hope that others in pain can see it this way too. I get to take responsibility for my life and make these and other decisions; I don't necessarily have to weigh my risks and benefits. I do find it helpful, however, to keep in mind a certain piece of wisdom from the song “Freewill” by Rush. "If you choose not to decide you still have made a choice."
Thank you for choosing to read this.
- I could use my cane to give my lower limbs some assistance or walk without it and save my hands and upper body from getting inflamed.
- I could move forward with my social plans and lift my spirit or cancel and prevent my flair-up from potentially getting worse.
- I could write when my brain feels foggy or do something mindless, knowing that yet another day has gone by without engaging in my passion.
- I could go to that crowded event where I'll probably have a good time, but I risk somebody knocking into me and triggering a pain response that lasts far beyond the moment.
- I could take a bath to soothe my muscles or preserve the energy it takes getting in and out of the tub.
- I could get a ride from a Lyft driver; it will most likely be a positive experience. Still, I might not choose to risk my cervical spine getting jarred as a result of the driver forgetting or dismissing my request to drive cautiously over bumps.
- I could use my walking poles in a location such as a theatre to help with balance or go without them and avoid stares.
- I could open up to a new friend about my pain, but I’ll risk receiving unsolicited advice and demeaning or blaming statements.
- I could try yet more invasive treatments and either get some relief or worsen my condition.
- I could take medication or continue to feel “this” way and not have to deal with the awful side effects.
- I could exercise and feel good or potentially get flared-up.
- I could sit in response to my leg and foot pain or stand and ease my back pain.
- I could use my wheelchair and rest my body or move around, inflaming my nerves but benefiting my joints.
- I could have that surgery and potentially feel better or risk an increase in pain and spreading of the CRPS.
Recognizing that there's often a middle ground to these choices (I could use my cane during part of the event and fold it up after a while), decision-making is still involved.
So, what to do to avoid living in that tiresome “If...then” space? I believe that presuming safety and relying on our experience of self-care is the way to go. Caution is sometimes rational and even helpful, but if that was my default mode, I would rarely leave the house and I would never move my body. I wouldn't engage in conversation or take risks. I certainly wouldn't write.
I'm having trouble deciding how to conclude, so I'll just say this:
Being a positive thinker, my nature tends to err on the side of opportunity, and I hope that others in pain can see it this way too. I get to take responsibility for my life and make these and other decisions; I don't necessarily have to weigh my risks and benefits. I do find it helpful, however, to keep in mind a certain piece of wisdom from the song “Freewill” by Rush. "If you choose not to decide you still have made a choice."
Thank you for choosing to read this.
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