I’m learning a superpower to cope with physical and mental pain

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I feel humiliated to be seen in my wheelchair.

On occasion, my wife, MeK, will push me through a noisy crowd exiting a Philadelphia Phillies game in a rush. We’ll weave through the crush of people, then come upon someone stopped in our way.

“Excuse us,” I’ll practically yell, bringing unwanted attention to myself. The folks around us step aside, but seem to stare and, to me, think, “Look at that. He’s weird.”

When something like that happens, I feel the “otherness” that I’ve experienced most of my life. I try to sink into my wheelchair seat as we make our way to the lot where we parked our SUV. Embarrassed, I jump into the passenger seat, while my wife hefts the 25-pound chair into the back.

I used to walk on my own, albeit with a distinct limp. I was able to climb steps, with difficulty. I used to cross rushing streams by stepping on slippery rocks, hike trails in national parks, or stroll cities like Paris.

But beginning more than a decade ago, I couldn’t do so anymore because of the complex genetic disease that causes my bones and joints to deform and degenerate with age. I lost the ability to walk more than 100 feet at a time. I use a cane for shorter distances and around the house. It is disheartening. When I’m out in public in my wheelchair, I imagine myself judged by others. Feelings of being defective fill my mind. My stomach churns with shame. I am dis-eased (see chapter 6).

My pain isn’t just physical; it’s also psychological. My feelings about being seen in a wheelchair is an example of the harshness with which I judge my condition, something common among people who are different from the supposed “societal norm.”

I may be projecting, though. Perhaps people around me don’t give me a second thought. It may be that they aren’t as judgmental as I perceive them to be. It could be that they are more accepting of disability differences than I imagine. 

Maybe I’m just judging myself.

For me and others with disabilities or barriers, negative attitudes about ourselves are poisonous. They reinforce the idea that we are rejects, broken, and strange because we have something “wrong” with us.

I’m working to reject this type of thinking in favor of another: radical acceptance.

Losing the genetic lottery

I’ve written before: “I lost the genetic lottery” as compared to winners like Tom Brady, Paul Rudd, and Rob Lowe.

I now regret that sentiment. It reinforces a mistaken notion that I’ve carried since childhood: to be born with a particular piece of DNA is to be a loser. It ignores that all humans are on a genetic spectrum; one variation is not better or worse than another. We can sympathize with (not pity) those in more unfortunate circumstances than ours.

People in chronic pain — whether from genetics, car accidents, or other causes — suffer more than most, but less than many. Others face their own challenges. Life is not a contest to decide who has the heaviest or lightest cross to bear. The point is to accept everybody where they are in life, including yourself, and to provide help for those who need it. This is not so radical an idea (see also: Jesus).

Acceptance is a gift to yourself. It means achieving a truce in the battle between your mind and body. It means shedding the shoulds in favor of the is. It means recognizing reality without apology.

My toddler granddaughter’s favorite movie is Disney’s Frozen. Any parent of young kids is probably sick to death of “Let It Go,” the biggest hit to come out of it. The song has a specific message in the movie, but I see a greater lesson in it. It’s an idea that applies to what people with any sort of difference must do. We must let go of our old lives and accept the new as they really are.

Accepting the radical

Some call this “radical acceptance.”

Writes Jennifer Caspari, PhD, a licensed clinical psychologist in Denver, on the Psychology Today website:

[It] is defined as being willing to fully accept the present moment as it is. Radically accepting chronic pain does not mean you like it or are resigned to it. You can practice tools to improve your quality of life even with pain. Radically accepting chronic pain simply means you completely acknowledge what is happening in the moment without struggling against it.

As a pain sufferer for more than four decades, Caspari feels as though she is in a battle with her condition. 

“[B]y fighting my pain, I am ultimately fighting myself and increasing my distress. Deep down, I know spending my mental and physical energy in a tug-of-war with my pain is futile. It does not make the pain better,” she says.

Explains a blog on the website of the therapy and recovery provider HopeWay in North Carolina:

Radical acceptance is a distress tolerance skill that is designed to keep pain from turning into suffering. While pain is part of life, radical acceptance allows us to keep that pain from becoming suffering. By accepting the facts of reality without responding by throwing a tantrum or with willful negligence. In other words, it is what it is.

Radical acceptance can be applied more broadly than just to pain sufferers, of course. It can help anyone who faces life challenges. 

Observes clinical psychologist and mindfulness meditation teacher Tara Brach, PhD, in her book Radical Acceptance, “The way out of our cage begins with accepting absolutely everything about ourselves and our lives, by embracing with wakefulness and care our moment-to-moment experience.” 

To accept the radical, sufferers of any kind of pain, physical, or psychological, must drop much of what they assume, that they are broken or damaged people. They must entertain their own version of the adage, “Pain is inevitable. Suffering is optional.” (See chapter 26.)

ACT up

Acceptance is a superpower. It can be as simple as a personal choice to be at peace with a condition, but it can also be pursued formally through acceptance and commitment therapy (ACT).

Explains an article on HealthCentral: “[With ACT] you practice accepting your distressing symptoms or situation rather than trying to suppress them. You then resolve to make proactive changes in your life based on your values and goals.” 

Adds ACT patient Kelly Teuscher of Davenport, Iowa, in another entry on HealthCentral:

Every day, situations arrive that are challenging. But I’ve learned how to deal with various situations and take them for what they are, and this has made my anxiety go down. For the first time, I’m using my mind to deal with my emotions and feelings.

In the same article (by writer Rosemary Black), Beth Dinoff, PhD, a clinical psychologist at the University of Iowa Hospitals and Clinics, compares ignoring pain and its consequences to trying to hold a beach ball under the ocean. It takes tremendous energy and effort. The alternative: Relax and allow the ball to rise to the surface and float. Dinoff says:

Often, people tell me that they just want their pain to go away completely, so they try to push it away as hard as they can. They begin to see how much effort it takes to suppress the negative sensation of pain. Once they have these images of the metaphor, they can apply this to their own lives.

I see a counselor who’s using ACT to help me align my thoughts and behaviors with the kind of person I want to be. It’s tough sledding. I’m working through decades of conditioning about my pain, my life, myself. It’s all part of a “biopsychosocial” approach (see chapter 26) to treating chronic pain that goes beyond just medicine. 

Peace with my pain

I’ve now achieved, however, a kind of peaceful standoff with my physical and mental pain: It tries to ruin my life, and I won’t let it.

My days range from bad to less bad; I never know what pain I’m going to get when I wake up. Agonizing sensations to almost acceptable ones come from moment to moment. How I feel depends on the meds I’m on as well as my mindset. I’ve come to realize that my pain will always be there, for the rest of my time on earth, regardless of what I or my doctors do. It’s a fundamental part of my life’s story.

By the way, by “acceptance” I don’t mean giving up hope of feeling better. Hope is healthy. To visualize a better life and make a plan to get there is also a fundamental part of being human.

But hope and acceptance can coexist, I’m learning.

I maintain hope in part by trying all kinds of treatments, from epidurals to acupuncture to medication and more, seeking relief. Some helped; most failed.

As my body deteriorated and my hurt grew worse, my pain tolerance also improved. Now my chronic pain is a constant buzz in my consciousness, like ringing of the ears. I haven’t given up on science or the possibility that something might come along to revolutionize pain care. You never know.

The lesson: Letting go is not giving up.

Jettisoning judgment

Meanwhile, I’m trying to accept my pain without judgment. It doesn’t mean I am broken or bad. I am not being punished. I need to live in the moment and shut out the static that distracts me.

I see acceptance as the path to my ultimate goal: peace of mind. With a therapist’s guidance, I’m imagining what that might look like. I’d like to be more at ease with my life, as difficult as that is with my disability. I’m working to escape my conditioning about what is and isn’t normal. I’m moving forward toward acceptance in all its forms — acceptance of myself, acceptance of others, true acceptance of what it is to be human.

In the 1960s, Elisabeth Kübler-Ross identified five stages of grief, which others eventually extended to seven. Acceptance and hope make up the final phases. For me, there has been a lot of heartache getting there, but I’m making progress. Hell, I’m practicing acceptance by thinking through this essay. I’m slowly learning to be more comfortable with who I am.

I still get embarrassed by being in a wheelchair, but I accept that it’s what allows me to get out into the world. It lets me live my life and “walk” with my wife, MeK.

A woman in an online chronic pain support group I attended put it best: “Acceptance is freedom.”

 

Pain Points

“Since you sound very courageous to me, I’m going to ask you to do something that takes some courage. Are you willing to talk to others, including strangers, and tell them what you want and need at any given moment and ask them to help you? Can you say to them, can you help me pick this up? Or move this chair? Or carry this box? Or listen to this. … It doesn’t sound that difficult, but the courage comes in being willing to show your vulnerability (I need help) to others in a very direct and simple way. … That may be the hardest thing any of us ever have to do. But here’s the cool part. Everyone, really everyone, is willing to help, even eager to help you or anyone else. But they just don’t know what to do to help. But if they knew, specifically not in general, they all will be glad to do it. And while they are doing it, you get to have some human-to-human interaction. … And this is something you can do right now. No classes to take, no book to read, no sessions to attend. But you gotta have courage to speak up and tell them what you need. Now. … It’s win-win. You get some help, they get to help, and everyone feels good.” — Jiri Vrba

“I’ve been learning and practicing Acceptance and Commitment Therapy [ACT] since 2003. I have yet to encounter any experience that cannot be accepted. Although there certainly have been ones that I’m unwilling to accept. But that’s my choice. As long as I’m also willing to be responsible for — that is to accept — the consequences of that choice, the peace of mind you mention is available.” — Julian McNally

Pain Points are comments on this essay as it appeared originally on Medium.com. They are solely the opinions of the commentators and do not necessarily reflect the views of the book author or publisher.