Are you sitting down? You may as well get as comfortable as you can be right now. This is a long story.

I first became “a patient” over 30 years ago at the age of 16. During a soccer game, I experienced a medical emergency out of the blue — a type of muscular syndrome in my legs so exceptionally rare I became only the second case in the medical literature at the time (elsewhere I have shared that story, along with photographs that require a warning). I required several emergency surgeries and a 6 week long hospitalization. After nearly losing my right leg to the rare disorder, it then erupted in the left leg as soon as I was out of a wheelchair and onto crutches. So I was now at risk of losing that leg too. The doctors did not know what to make of me, and I became a “medically interesting case.”

In the years after the doctors declared the original problem “fixed,” the pain persisted and became unrelenting. Several of my doctors told me “the pain is all in your head” because it did not make sense to them why the pain was not only not resolved, but increasingly debilitating. I tried everything over the years (cortisone injections, PT, medications, rolfing, acupuncture, diets, devices, bed rest, you name it). At the start of each new treatment, I felt hopeful and optimistic, but by the end, was dejected and despairing. Racing around seeking external sources of relief was like riding a rollercoaster of perilously raised and then devastatingly dashed hopes. As the pain got more pronounced and entrenched, I became more and more demoralized.

It wasn’t even just pain. The list of diagnoses I accrued since I was 16 made me feel as if I should get an honorary M.D. The original, structural diagnosis, Acute Exertional Compartment Syndrome, was only the first. Later on, it turned into Complex Regional Pain Syndrome (formerly Reflex Sympathetic Distrophy), Central Sensitization Syndrome, Chronic Fatigue Syndrome, Adrenal Exhaustion, Fibromyalgia, Mast Cell Activation Disorder, IBS, Endometriosis, Diverticulosis, atypical Migraine, Anisocoria, Hyperhidrosis, Exercise-induced Uticaria, degenerative Osteoarthritis in my back, Labral tears in my hips, and so on.

During these years of illness, I somehow recovered from the haunting pain in my legs and experienced some years of remission. Over time, I got better from all of it and experienced a long stretch of health.

Then a pain began in my left leg behind the knee in 2018, and while all the other issues had long been resolved, this new pain became debilitating. Apparently, my peroneal nerve (a motor nerve) had become entrapped and strangled by scar tissue adhesions following all the surgeries, a decidedly structural issue. This created a severe contracture of my left knee, meaning my leg is always bent and can’t straighten. Because all my other surgeries had been successful — the first dozen in stopping the progression of the acute compartment syndromes, and surgeries 13, 14, and 15 in remedying the neuromas and nerve entrapments of other branches of that same nerve — I still believed in surgical intervention.

I had what I called my “last hope” operation (surgery # 16) on Christmas Eve 2018. It not only failed, but made my nerve pain far worse. I became desperate for relief. The pain had ravaged my body and my relationships, it upended my career and my confidence, and it even made me unable to trust my own perceptions of reality. I was demoralized and quickly losing hope.

And then, in 2019, I stumbled upon Curable and this was a turning point that changed the course of my life. I immersed myself in the study of the powerful cutting-edge neuroscience research on chronic pain (“neuroplastic” pain), and I learned how to reliably calm my own nervous system and reduce the pain. In spite of chronic nerve pain and a significant knee contracture, I was able to walk for miles and miles at a time, having learned tools to reduce the intensity of the pain. More importantly, “the work” I was doing changed me to the core. I became “bodywise,” as I call it, and through my “sage practice” — I was more empowered than ever before. I reclaimed my life, only better. I felt like I could fly.

Ah, but wait for it!

My pain story does not end there, however. In the spring of 2021, the chronic nerve pain behind my left knee yet again became unrelenting and progressively debilitating. My knee contracture had gotten worse, and when standing my left foot could not reach the ground, requiring crutches to walk. I resisted the idea that the increased pain was in any way structural and worked my mindbody tools to the max. When these failed to touch the pain and I was disabled and housebound, it was time to return to the medical world. This was not easy, as it had long been a source of trauma and invalidation. I credit my empowerment work with enabling me to muster the courage to even get myself to the doctors, and, once there, having the strong voice I needed to advocate for myself.

It turns out my left peroneal nerve had become “completely matted down by a tremendous amount of scar that adhered the nerve to a nearby tendon,” (quoting the surgical report of surgery # 17). Yep. 17. It was terrifying to risk losing function of leg and making the pain worse. I am allergic to opiates, so it would be an especially painful recovery.

In September 2022, my new surgeon liberated the nerve, and it was clear from the findings that I would not have been able to walk without crutches again had I not had the surgery. “No wonder you could not even move your leg without severe nerve pain,” said the surgeon. My nerve had been tethered by scar tissue adhesions to a tendon, which would have caused progressive damage to my motor function. After a brutal rehabilitation period (“hitting a nerve” is a saying implying extreme pain for a reason), my body learned to walk again and I learned the importance of “the work,” even when there is “structural” causes of pain.

Ah, but wait for it….

Yes, I experienced a long period of disabling pain once again. (I am sure you don’t want to hear this. That makes two of us!) In May 2024, the nerve pain behind my left knee got far more intense, and the contracture became disabling. In the summer of 2024, I had to close my practice to attend to my own health and attend an intensive physical rehabilitation & manual therapy program. The hands-on work on the adhesions has lessened the contracture, and as a result, improved the pain. I’ve been able to go for walks in the woods again.

I honestly don’t know which parts are structural and which are neuroplastic, but I do know now that whatever else was going on I was also experiencing significant burnout in my clinical practice. After a sharp increase of requests, I began taking on too much, and the stress absolutely amplified the pain.

Does this recent flare mean I can’t help you with your pain? No, definitely not. In fact, each time I experience a setback, I dig deeper into my well of strategies, which I can in turn share. I am distilling decades of personal experience along with my clinical expertise into wisdom that can help you. There should be some benefit to the suffering, “so that the pain not be wasted,” as Audre Lorde put it.

Yes, my own “Sage” skills reduces pain intensity, sometimes dramatically. Nerves that were severely compressed for years as mine was take years to recover.

But this isn’t really about nerves. It is about the life you choose to make, in spite of any pain, or even in relation to it. There will always be variables we cannot control in life - but we do have some control.

How will you use your agency? As Mary Oliver asks, “what will you do with your one wild and precious life?”

Here’s the beautiful thing: Looking at my life now, I see the deep and hilarious friendships of mid-life; the almost blasphemous joy of finding the love of my life (and his two delightful kids) and being part of a new family; the close relationships with my original family; and last but not least, the fulfillment of this work.

It is not in spite of my pain but because of it that I offer something of value to other people. Having now shifted my practice from 1-1 work to teaching, group work, and content creation, my hope is to reach many more people and teach them, not only how to calm symptoms, but also to make their own lives bigger and more meaningful than any pain.