Lara’s Story

I first became “a patient” over 30 years ago at the age of 16.
Since then, I have had 17 surgeries and been on crutches for a total of 15 years.

On a beautiful day in 1991, I was a junior in high school and playing a soccer game when I suddenly could not lift my right foot. Then the pain came and I fell to the ground. It was only on our 3rd trip to the ER that I was taken seriously. It turns out I had an extremely rare condition that had become a medical emergency. (Actually, I was written up as only the 2nd case of Acute Exertional Comparment Syndrome in medical literature — the first guy lost both legs and nearly died.) This is a condition where the pressure inside the muscle compartments gets extremely high with exertion and cannot come back down on its own. Doctors have 6 hours to operate and relieve the pressure or the muscles begin to die. When the first ER doctor told me to go home and I was being a crybaby, I lost critical time. In the third emergency surgery, they slit my leg from knee to ankle to relieve the pressure, and that was when it ‘burst.’ My wound was 5 inches wide at its widest and was not fully closed for a year. They considered amputating but thought “she’s young and healthy, let’s try to save it.” It was so bad they did not allow me to look at my own leg until several weeks in after surgical skin grafts. (A picture is worth a 1000 words, but this one is not for the feint of heart.)

I ended up being bedridden in the hospital for six weeks (I was there so long the nurses threw me a goodbye party when I got discharged!). I could not return to school and was in bed or a wheelchair for the remainder of my junior year. Once I graduated to crutches, the same medical emergency occurred in the other leg just for being ‘the good leg’ and doing the weight bearing. What were the odds?

One doctor told me it was like I’d hit the lottery twice, but the bad kind of lottery.
I became a “medically interesting case.”

It has been 34 years now since that sunny September soccer game. I have had 17 surgeries in total, many of them emergencies. Some of them were to resolve the ‘medical sequelae’ from my original diagnosis (i.e., complications that became disabling in their own right), like nerve entrapment — think: scar tissue tightly adhering the nerve to nearby tendons.

In addition to all the never ending years of medical trauma in my legs, I also developed a slew of other conditions (chronic fatigue syndrome or adrenal fatigue, mast cell activation disorder, central sensitization syndrome, CRPS, IBS, and so on). I had accumulated so many diagnoses in my 20s, I should have an honorary MD. I told doctors:

It’s as if my body has PTSD.

My body was traumatized, as was my nervous system, immune system, psyche, confidence, and heart. Several years in, my scars on both legs looked like giant parentheses. I used to say they were the parentheses between which I had to live my life. I always had severe hard-stop limitations. Let’s just say, I do not remember a time when I felt like others my age.

I felt very alone.

There were some stretches of time I experienced good health, and a few years when I was able to hike again (we’d hiked all the 4000 footers in New England when I was a kid). You might have guessed then from my 4000 watt smile how bad it had once been and how grateful I was to walk again.

Here’s where the story takes a turn.

While my first 15 surgeries were successful (in spite of brutal years of re, in spite of the brutal months (years) in rehab I needed each time.

It was surgeries 16 and 17 that went sideways. For the last 8 years, I have had non stop debilitating pain in a different place along the peroneal nerve behind my knee. I have not been pain free for even a second since 2017.

Apparently, the peroneal nerve (which branches out from the sciatic nerve and enables you to move your foot) had become entrapped in scar tissue and strangled by adhesions. “No wonder you couldn’t walk!” said the surgeon. All this resulted a severe knee contracture. To this day, I cannot straighten my left leg or lie on my left side.

It was Christmas Eve 2018 when I had my “last hope” surgery (# 16 for all those of you keeping track). TLDR: It failed. (Later on, I learned that the surgeon’s immobilizing my leg post-op meant new scar tissue was allowed to run rampant during a critical window. Oops.) The pain got worse. It was devastating to my body, my relationships, my career, and my confidence. By then, with all the doctors’ disbelief, I could not even trust my own perceptions of reality. I was losing hope. I was losing it.

In my desperate search for relief (sound familiar?), I stumbled on the Curable app in 2019 (thanks, Facebook). I dove head first into the science of brain-based (i.e., ‘neuroplastic’) pain. I learned how to calm my nervous system and turn down the volume on the pain. In spite of the contracture and ongoing nerve pain, I even began to walk again. First to the lobby of my building. Then to my mailbox. Then, miraculously, for miles. “The work” changed me to the core. I was more empowered than ever before. It felt like I could fly.

Ah, but wait for it!

My pain story does not end there, folks. (Do you relate?) In the spring of 2021, the persistent nerve pain in that same quarter-sized spot behind my left knee became unbearable. Soon, I was bed-bound again, unable to work. By then I’d become a mindbody coach and was seeing clients in spite of constant 7-8 pain. One day I showed up on zoom, and my client said, “My god, you look awful. Go take care of yourself.”)

The knee contracture worsened such that my foot could not reach the ground when standing. Boy, did I still resist the idea this was ‘structural’ for a long time as I worked my mindbody tools to the max. But nothing touched the pain. So back to the medical world I went. (Even Dr. John Stracks said, I do not usually say this, but this is clearly structural.) This was not easy for me as it was the source of so much trauma. Many of my doctors (not all - some were nice, I swear!) had invalidated, dismissed, and gaslit me. A couple doctors even did things to my body without my consent (one took a scalpel from his pocket during a routine visit and sliced a necrotic growth from my leg before I even knew what happened).

The only way I could muster the courage to see another surgeon was all the empowerment work I’d been doing. It also gave me the voice to advocate for myself when they were not listening to me. (Thank you, “the work!”) And my god, did I advocate. My doctor and I even ended up looking at the MRN (neurography scan) together. I pointed at something and asked him, “what’s that?” He said, “hmm, that’s a small ball of something that is exactly where your pain is.” Uh oh.

So off I go into surgery # 17, this one to repeat exactly what # 16 had done but with a new surgeon. Unlike in 2018, in 2022 we would get me moving immediately post-op. The two main surgical risks: losing function of the lower leg and making the pain worse not better. That surgical report read, “the nerve was completely matted down by a tremendous amount of scar that adhered the nerve to a nearby tendon.” When I woke up my leg was paralyzed from the anesthesia. I had to wait 24 terrifying hours before knowing function would return. But the pain, oh the pain. (Did I mention I had become allergic to all opiates in my 20s? Every last one of them. A for effort, Tylenol and Advil.) In acute post-op pain, I still had get the leg moving immediately, or else. More torture. (‘Hitting a nerve’ is a saying for a reason, folks.) Rehab was long and excruciating. (Actually, rehab really hasn’t ended yet.) I did learn how to walk again without crutches and had some reduced pain for a glorious couple months.

Guess what happened next?

Yes, we don’t even need to go there, do we? You know what happened. The pain soon became disabling once again. (I am sure you don’t want to hear this. That makes two of us.) In May 2024, the pain was so intense I had to stop working. It was like pulling teeth, but I had to close my practice for a while to attend to my own health. It took several months in an intensive physical rehabilitation program, but I became able to go for walks in the woods again. Deja vu much? It began again in April 2025 and it is almost September as I write this. Round 2 of that same intensive program again, here we go. (Wish me luck please!)

So here’s the deal: I don’t even know what is ‘structural’ and what is ‘neuroplastic’ anymore. I certainly have some learned, well-worn neural pathways in that spot. But I do know it is not a binary as it has almost universally been represented in my field. (I am proud to say, I am part of the reason this is changing — I am nothing if not persistent as hell now that I am on a mission.) At this point, it does not matter to me which kind of pain it is. My peroneal nerve problem is inoperable now in any case. I’ve even considered drastic measures, but removing the leg could make the pain worse, and killing the nerve would mean I’d never move my foot again. Not optimal.

I am learning for the umpteenth time now (deja vu all over again): reducing my ‘stress bucket’ does help turn the volume dial down on pain intensity, even if the pain remains. Research confirms that stress amplifies pain, no matter what its origin. Training the nervous system to calmly ride the waves of life can reduce pain intensity.

Enough about me - how does all of this help you?

After all I’ve been through, believe me when I tell you I have learned a lot. I have had to dig deep. And then deeper still. Especially when the shame and self blame hit, which it is bound to do when the message out there is that “healing” is only achieved when you are symptom free. Chances are, you’ve felt this too?

So at the very least, I want to share my hard-earned wisdom, damnit! It helps me to help you.

Shouldn’t all my suffering go to good use, so that the pain not be wasted?

Despite the persistence of this pain, I still have hope. I still believe in healing. My situation is just begging me to reimagine what hope and healing look like for me (and for you too, if your symptoms linger no matter how much “work” you do).

The old kind of hope isn’t working anymore. The one that says I hope I can be like those success stories and be symptom-free… like, tomorrow!) That kind of hope is more like a hammer bludgeoning me every morning I wake up and it’s still there.

So I have found a new kind of hope: I hope I can harness all the control I do have (amidst all the control we don’t have!) and make my life full and rich, today, right in this moment, even in the face of pain and limitations. There is so much hope in what we do not yet know. You can never truly know what is possible in the future, can you?

This is not a story about a leg, or a nerve, or even a person.

This is a story about reimagining hope and redefining healing.

My life feels like it is bursting with joy and love and creative inspiration these days. I met the love of my life, and bonus!, he comes with two incredible kids. Instant family - add water and stir. Who knew? I gave up on being a mother a long time ago, and here it has shown up for me in a different form. My old dream was to be a tenured professor, but here I am on a creative tear in a new field — writing, public speaking, putting my ideas out into the world (and as an ‘expert’ no less). I get to reimagine my work continuously so it evolves with me.

None of it is perfect, far from it! But who or what is perfect in this world? Some days it feels too hard to make the most of my one wild and precious life. It’s a messy endeavor, but I’ll take messy every time.

Here is what I know for certain:

I have made my life bigger than the pain. And you can too.

This is how we heal.