acceptance, back pain, chronic illness, chronic pain, disability, disabled, emotions, healing, health, injury, invisible disability, invisible illness, medical device, pain, pain management, Quell, spine, spoonie, spoonie life, wellness
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How Do I Break the Cycle of Pain and Feel Better? Also, a PSA for Pain Advocates

Here’s a public service announcement before I actually get into the blog post: I found this on the #PatientsNotAddicts Facebook page, and it should get in front of as many eyes as possible.


Human Rights Watch is collecting letters from pain patients impacted by the CDC, DEA guidelines. They say inadequate pain care is torture and a violation of our right to medical care.

Their address is:
350 5th Ave.
34th floor
New York, NY 10118-4700

NY office telephone # 1-212- 216-1832

That’s important, yeah? Write a letter. Make a call. Stand up for our rights as patients!




… What if I didn’t hurt today?

I had what therapists call “the breakthrough” at my session this past week.



After months and years of suffering from this pain, shaping every day around it, planning ahead for it, wondering if it really was the biggest part of me, I realized that I am so much more than this pain.

I’ve told myself that for a long time — I even say it to others on my blog’s welcome page — but the penny didn’t drop until I read an article about how cells hold memory. What I also know is that we shed our cells constantly, and every two years approximately 98 percent of our cells are new. The remaining 2 percent is replaced approximately every seven years.

(At least, that’s what I half-remembered from science class. What actually happens is that our DNA is set at birth; the accompany cells [red blood cells, for instance, live four months] regenerate at different rates depending on where in the body they are located.)


Would you mind regenerating already? Kthnxbai.

I’ve been in pain for eleven years now, almost twelve. I absolutely should’ve shed those cells that are clinging to this pain, but they carry forward, far outliving any possible cell regeneration period. When they are regenerated, they still follow those same pathways. 


Why is my body stuck in this immovable pattern? Why does my body react as if I were in a car accident yesterday instead of more than a decade ago? And furthermore, how? How does my body remember that original injury so well? There is structural deformity, sure, but like a river that reroutes itself, in theory my cells could just build a new pathway around that deformed area. If one way doesn’t work, they’ll find another way. Instead they keep carrying pain signals, running into a brick wall, heads bleeding, eyes blinded, and bodies slamming that wall again and again and again.


They could do with a cone of shame.

“So what if I didn’t have this pain?” I said to Linda. Sitting in her office like most Thursdays for a year-plus prior, me in the corner chair, her by the window, surrounded by funky artwork I likely would’ve picked for my own office. “What if I just acknowledge that I have this pain, and then I ignore it entirely? I’m not hurting myself. There’s no current injury. There’s some kind of damage left over, but in reality it shouldn’t still be there.” I explained the “shedding cells” theory. This would also apply to any calcified facet joints that formed around the nerves in my midsection; what keeps my body from eventually reverting to a position far more comfortable? Shouldn’t these cells take the path of least resistance? 

Then I said, “I’ve learned this pain. Those pathways keep going one way, and I keep holding onto it. What if I didn’t? What if I somehow retrained my brain to ignore those signals?” I’d also heard about neuroplasticity, the study of how a person’s brain can reorganize itself and change. I’m sure this massively simplifies many fields of complex science. I’m also sure that my body shouldn’t be in a constantly reactive state.

Pain is biological and physical, but it is also emotional. It is spiritual. It becomes an individual’s identity. It overshadows lives. We latch onto that because it is the biggest thing we can see. For many, it’s the only thing we see. In my head, my pain takes the form of a skinny meth-head-looking man who molds himself to my frame, his hands clasped so he can piggy-back me. His mouth is by my ear and he screams without end. I have to navigate my life — appear as a normal human being, talk to people, engage in activities — with this man hanging from my neck, choking me, clinging to my back, and screaming one long, high, unyielding note into my ear. He never takes a breath. He doesn’t have to. He hasn’t stopped screaming for almost twelve years.   



Like this guy!

…What if I could train my brain so I do not hear his screams?

I presented this idea to Linda. “This is what we call ‘the highest level of acceptance,’” she replied, leaning forward in her seat. Her face contained palpable excitement. “I actually wanted to, you know…” She pumped her fist in the air like she was at a rock concert. “… but I figured it wouldn’t be very professional.”


I think the pose is very professional.

I laughed. “Is this the breakthrough thing? Did that just happen?”

“Yes,” she said, smiling. “It’s like — what if I didn’t eat chocolate today? Don’t worry about cutting chocolate out forever. Don’t think about it like a calendar. Make one choice: What if I didn’t eat chocolate today?”

“What if I didn’t feel pain today?” I said, considering.

“What if you didn’t feel pain today?” she said.  

I thought about it more as I blinked in the dark later that night, comfy and cozy in bed. What if… It was almost a magical phrase. It held so much power and possibility. 

What if I could jog?

I haven’t ever entertained a world in which I could jog. But earlier that day, after my appointment, I became aware of two things: 1) I had jogged from my driveway to the front door and it hadn’t hurt my back; and 2) I forgot to take Tramadol for six hours after it was due. Granted, I also started Lyrica again, but I’ll take victories where I can get them.

My thoughts sped up. What if I could jog? What if I could run? What if I could travel whenever I wanted? What if I could wear high heels? What if I could start rock climbing again? My thoughts became wilder and bigger and grander and higher.


What if I could do this while simultaneously peeing my pants in fear?

I don’t expect that I can have a thought — “I do not feel pain” — and I will immediately be successful. I don’t expect this to be the end of flare days. I don’t expect to suddenly cure myself. After all, I’m writing this entry while sitting in my recliner, sore and tired.

But I do expect a fundamental shift in my being. Once I had that revelation… once I asked, “What if…”  It was like those cells finally began to let go.

I was at my cousin’s wedding this Memorial weekend (stay with me, this is relevant), an event for which I’d been anxious in more ways than one. It was a fantastic weekend, a fabulous wedding, and I’d been anticipating that for months. I also had that dull, sick feeling of wondering whether I could physically stand three days of sustained activity. Would I need to bow out early? Would I need to sneak away and rest? Would I be able to do literally anything on the dance floor, or would I be sitting at my table all night? Would I even be there all night?


I shouldn’t have worried. And yes, I’m wearing the Quell under that skirt.

As it turns out, I worried far more than necessary. Sure, I needed to take a few breathers. I napped a lot before the ceremony. I needed to lie down on a couch in the dressing room upstairs during the reception. I needed several alcoholic drinks. I still bowed out a bit early, though it was far later than I thought I’d make it. I danced. I danced a lot, even though I somehow didn’t move my torso or neck as much as I normally would have. If anything, it was Billy Crystal’s “white man’s overbite” dance from When Harry Met Sally. But damn it, I was on that dance floor and I had a great time. It’s now two days after the wedding and I am legitimately exhausted and rickety, still in my pajamas and debating whether to return to bed. Worth it!

original_url: E30E2B8D-4054-4A83-B390-F767F77EC0E9

Dancing with Husband!

And I kept asking myself throughout the day and night: What if I didn’t hurt right now? What if I danced? What if I enjoyed myself despite the pain? What if I forgot about my pain for a while? What if, what if.

I even went to a bookstore before the bridal party started getting ready for the big event. I asked if they had books on neuroplasticity, and — after they told me to check the Sudoku section — I eventually found what I was looking for in “Science” (thank God). Two books by Norman Doidge, M.D., about using the power of thought to change bodily reactions. Yes sir, please and thank you.

I don’t believe the brain is infinitely malleable; I think that would be naive. However, I do believe that I have at least some power to change my present circumstances. I am going to do all that I can to change things on my end. On the other end of the see-saw are my stubborn injuries.

If I do everything I can to change things over which I have power, surely that will give my body some leeway and allow it to reroute the pain pathways to which it so desperately clings.




  1. Pingback: ‘How Do I Break the Cycle of Pain and Feel Better?’ by J.W. Kain | real.eyes

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