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, I 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, Irritable Bowel Syndrome, 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 recovered from the haunting pain in my legs and experienced some years of remission. Over time, I got better, from all of it. I again 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 motor nerve had somehow become entrapped and strangled by scar tissue adhesions, a decidedly structural issue. It created a severe contracture of my left knee, meaning I cannot straighten my leg and it is always bent. Because my other surgeries had been successful in stopping the progression of the acute compartment syndromes, and surgeries 13, 14, and 15 had been successful in remedying the neuromas and nerve entrapments of other branches of the same nerve, I still believed in surgical intervention for this new issue.

I had what I called my “last hope” operation (surgery # 16) on Christmas Eve 2018. It not only failed, but it 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 made me not even trust my own perceptions of reality. I was demoralized and quickly losing hope.

And then, in 2019, I stumbled upon Curable and a fortunate confluence of books, research, people that changed the course of my life. I immersed myself in the study of the powerful cutting-edge neuroscience research on chronic pain (“neural pathway,” “neural circuit,” or “neuroplastic” pain), and I learned how to reliably calm my own nervous system and reduce my own pain. In spite of chronic nerve pain and a pronounced contracture of my left knee, 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 “the work” — the “sage practice” — I became more empowered than I had ever been before. I reclaimed my life, only better. I felt so free of old burdens, it 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 so much worse, my left foot was no longer even able to reach the ground. I resisted the idea that the increased pain was structural and worked my mindbody tools to the max. When these failed to touch the pain that I became housebound and unable to walk, I knew it was time to return to the world of medicine. This was not easy for me, as it had been a source of intense trauma, hurt, and invalidation for so long. Here is where I credit my empowerment work with enabling me to muster the courage to even get 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). Yep. I had to have surgery # 17. This was a terrifying prospect, as the risk was losing function of my lower leg while also making the pain worse not better. I am allergic to opiate pain medications, and so it would be an especially painful and difficult 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 my lateral knee tendon, and was strangled in a way that would have caused progressive damage to its motor function. After a truly brutal rehabilitation period (“hitting a nerve” is a saying implying extreme pain for a reason), my body learned to walk again and I learned with urgent gratitude the importance of “the work,” even when there is “structural” causes of pain.

Ah, but wait for it….

Yes, I have experienced a long and terrible flare once again. I am sure you don’t want to hear this. That makes two of us! As of May 2024, I am still coping with intense chronic nerve pain behind my left knee, which again impacts my life significantly. I honestly don’t know which parts are structural and which parts are neuroplastic, but I have a strong suspicion my dramatically increased stress level — ironically due to a sudden, unexpected increase in demand for my services — might be a factor. (This is part of the reason I’m closing my practice to new 1:1 clients for the summer, to practice what I preach!)

Does this recent flare mean I will never be out of pain? No. Does it mean I can’t help you heal your pain? No, definitely not. In fact, each time I experience a setback or flare this bewildering, I have to dig so deep into my own personal well of strategies that I am able to share an almost exponentially expanded library of tools and insights with my clients. It has not escaped my notice that I become better and better at what I do the more pain I have had to endure. I am distilling decades of personal experience with pain into digestible nuggets of wisdom for each 50-minute session I do or talk I give. I want you to benefit from my suffering, “so that the pain not be wasted,” as Audre Lorde put it.

Yes, my own personal practice helps me reduce the intensity of the residual nerve pain behind my left knee, sometimes dramatically, and it enables me to get through this achingly long rehabilitation process. Nerves with years of compression like mine endured do take years to recover. I am confident that nerve and I will recover.

But I have learned this isn’t really about nerves. It is about the life you choose to make, in spite of the pain, or even in relation to it. There are always variables we cannot control - but no matter what, we do have control over other variables. So what do you choose to do with the agency you do have? And, 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 - with the deep, tender, and hilarious friendships I have now at mid-life; the closeness I share with my generous and loving family; the almost blasphemous joy I feel having found the true love of my life (and his two delightful kids!); and last but not least, the true fulfillment I feel in my work every day. It is not in spite of my pain but because of it that I am able to really help people. And now, as I shift into more content creation than 1:1 coaching, I aim to reach many more people and teach them, not only how to calm or heal their symptoms, but also to make their own lives so much bigger and more meaningful than any pain.