It’s hard to imagine the past before I had to build my entire life around avoiding debilitation. Thirteen years ago, I dislocated my left sacroiliac joint. The sacroiliac (SI) joint attaches the pelvis to the lower spine and provides support, stability and helps absorb impact when walking and lifting. TK
I was 25 years old, working as a raft guide on the Chattooga River in the southeast, U.S.A. I was living in a bungalow, surrounded by friends, and had little responsibility! I had a flip phone I barely used, and I was as disconnected from the world as I wanted to be — living and loving wholeheartedly.
My carefree twenties came crashing down on a hot day in July of 2008. I had an accident loading rafts at the end of a river trip. I caught a 90-pound raft against my chest from the top of a school bus, and it crushed me to the ground. I heard and felt a pop and could hardly stand back up.
Sacroiliac joint dysfunction came in like a wrecking ball on my youth.
I was born a happy, playful kid, full of spirit. My roots are built strong and resilient by the mountain folk of the Appalachians. I learned to push forward through trauma and challenges with a smile ever since I could walk. I went outside to run free in the forest to cope with everything — my ultimate escape.
Not this time. I tried to push forward but met resistance. My body became fragile. My spirit slowly crumbled. I gave up for the first time in my life, there was no escape. Pain encapsulated my waking moment. Sleep became non-existent.
Overwhelming anger and resentment haunted me. Self-loathing consumed me.
I became dependent on self-medicating and trying to mask the pain.
Working and exercising were nearly impossible.
At 27 years old, I was in the disability office, confused, trying to fill out an application I didn’t understand. Mortified.
I didn’t finish the application. I was used to living on pennies, so I signed up for unemployment benefits. I was at a dead-end road. I liked to work, and I wanted to work. Exercise was my outlet, and work fulfilled a sense of purpose. I was losing the ability to do either.
I relived a lonely cycle of depression and debilitation over and over again. Slowly, painfully, I slipped into a dark pit of despair. Weeks turned into months; months turned into years.
Over time, I made it my mission to defeat my disabling condition, so I got better at breaking the cycle quicker. I found ways to live with my little wrecking ball with little resources or money by trial and error for over a decade — my willpower wavering.
It wasn’t clear that I’d have to live with this injury for the rest of my life until many years into the battle. Harsh truth for a young woman with aspirations of travel and outdoor adventuring. My freedom collapsed into imprisonment.
I have a permanent SI joint ligament injury and hypermobility that takes an enormous amount of maintenance. That’s a jagged little pill to swallow.
You see, once you dislocate the SI joint and sprain the supporting ligaments, if you don’t get aggressive intervention immediately, you will keep dislocating and spraining that joint. Over and over again — until permanent damage settles in.
The mistakes I made early on led me to the routine I have today that keeps me going and living a quality life, even with permanent damage.
Protect your routine — it is your foundation
The first several years, I made crucial mistakes in addressing my reality.
- Denial. I continued to paddle whitewater until I practically couldn’t walk afterward. A couple of years into my injury, I had to give it up — for a long time. It shattered my heart as I lost a community of friends and work that I loved. I lost my identity and my escape.
- The wrong exercise. I replaced the above with hot power yoga. Sure, I got strong again; at least my legs and arms did. I was unknowingly creating more instability in my back. The moving meditation helped me sort through the emotional explosion in my head, but I was not addressing the physical root of the problem. Hot yoga is too much for an angry SI joint.
- The wrong work. I continued to work as a server. Pounding on my feet, carrying heavy loads for hours into the night, left my body fragile and my sleep destroyed. But I paid the bills, barely.
- The wrong treatment. I masked the pain. It turns out you can’t drink and toke your pain away and eat ibuprofen and muscle relaxers every day of your life if you want to be productive and make a significant positive change. It took me a bit to climb out of that fog.
Establishing a strict routine was a foreign concept to me. I was consumed by making ends meet, finding a career, and trying to stand on my own two feet. The pain became so exhausting that every day tasks seemed like mountains to climb. I was burning the candle from both ends.
After years of trial and error, I developed a routine — the light at the end of the tunnel, my hope slowly restored.
- Alternative health care — yoga, meditation, acupuncture, massage, cupping, and all the woo-woo hippie healing methods that change thought processes and address stress, pain, and mental health.
- Exercise — not too much nor too little, the right kind at the right time; this was like trying to crack the code to some scientific mystery! Specifically, yoga (the right type), traditional strength training, functional mobility, cycling, and walking have worked for me. I’ve only fine-tuned this part in the last five years.
- Sleep — the body does not recover if it’s not rested. I have suffered from sleep problems for most of my existence. I became a zombie full of pain. Now, I protect my sleep routine like a momma bear protects her cub.
- Recovery — restorative yoga, Epsom salt baths, rest days, herbs, a heating pad, naps, myofascial release therapy, and so much more! Your recovery game must be as good as your exercise game.
- Diet — food is medicine. When you live in pain, the last thing you need is stupid pain and inflammation, like indigestion from a poor diet.
- A support system — my husband literally carries me through life. It’s essential to have this person when living with a chronic condition. And friends and family. People who get you.
- Setting boundaries — it took me a long time to set my boundaries! I pushed myself a lot with exercise and work. Sometimes that backfired. Sometimes it worked out. I’ve mastered this over the years by being okay with reality. But learning to draw a line in the sand for other people has been trickier.
There will always be external forces that frustrate your efforts to protect your health when living with chronic pain and the ugliness that goes with it. Defeating the debilitation and depression cycle is a constant.
A structured routine has allowed me to adventure outside again, without fear. It took about nine years to get there. No biggie.
Debilitation is always lurking around the corner if I’m not hyper-focused on defeating it.
After all these years of effort, I can live pain-free for months at a time. When I do have a flare-up, the pain is fleeting. I’m back on my feet in a few days. I scale back where I need to. Typically, I’m back to normal in about a week.
Most importantly, I don’t live with constant pain and depression anymore.
Unless, of course, something huge like a pandemic derails my routine.
Healthcare workers like myself were thought of as “soldiers” during 2020. I am not a soldier. I did not sign up to sacrifice my health. Sacrificing myself leads to the vicious cycle I’ve fought so hard against for thirteen years!
Do you know how hard it is to choose between sacrificing your health or your financial security? After all, acupuncture isn’t free, and health insurance helps — a little.
The harshest truth
The most disappointing discovery I’ve found is the way other people react to my situation. Being in the workforce as someone with a condition, or technically a disability is harrowing.
I like to call it a condition.
Of all the jobs I’ve held, there is one typical pattern. People reject the notion of my limitations. And they react.
Um, it’s my condition, not yours to judge.
Not once has anyone considered that I probably feel worse than they do about my limitations.
Do you know how long it has taken to accept that I have a condition?
Do you think I want to be a burden to the team?
Do you think it feels good to question my purpose in life and feel like a failure?
Oh, it must be because I talk about the fun things I can do now because of my hyper-focused routine that sound risky, like mountain biking.
I see. You wanted to hear the sexy part of my story. Like when I couldn’t walk, my husband had to get me down three flights of stairs to put me in the car and drive me to acupuncture.
Yup, that’s what I want to talk about in the break room.
Or the many times I laid for weeks crying and praying in a desperate plea to God to take the pain away and crawling from room to room.
That’s what you want to see on social media?
So you can validate my condition?
Do you know what it’s like to wish for a different body to live in?
I get it. It’s because I look athletic. I’ll go for the feeble look.
To help you understand my truth.
Ooooh, it must be that smiling picture on Instagram of me in a kayak. What a sin.
Guess what? I have a condition that I have painstakingly learned how to manage.
I have a right to live a quality life. And do it unabashedly. No matter how it makes you feel.
The woods are my roots and I will adventure in them as long as my feet touch this earth. It is how I connect.
If it’s confusing to you that someone with a back problem can do things like bomb downhill on a mountain bike, I’d be happy to write you a book on how I’ve come this far.
Or would you rather judge than understand?
I’ve learned, people more readily accept a limiting condition they understand, like pregnancy or surgery.
They understand what is common. I am not common.
Is that okay with you?
I could have resorted to pain pills from the start. I understand why people do.
I know what it feels like to have the urge to do anything to take the pain away.
I chose a different path. I decided to live well.
Oh, that’s it, you’d understand if I chose a different approach.
Or would you?
I chose to use movement as my primary tool to address my condition.
Do you understand why mountain biking is beneficial for a back injury if done correctly?
Or how strength training helps you build stability?
Or how kayaking on easy whitewater is nothing like pounding your feet on a tile floor for twelve hours?
If you don’t understand, how can you judge my lifestyle? I earned it.
The lack of my curated routine leads to pain and debilitation, followed by depression and a poor quality of life. Quite simple.
Do you understand now?
My new perspective
Thanks to the roller coaster other people have put me through, from harsh judgment to sabotage, all while navigating my own hell — I’ve come out on the other side with fierce motivation to seek change in my circumstances.
From Heal Your Body A-Z, by Louise L. Hay, I have read the “problem of depression” one trillion times. As stated, the “Probable cause is anger you feel you do not have a right to have. Hopelessness. The new thought pattern is, I now go beyond other people’s fears and limitations. I create my life.”
I create my life. My mantra for 2021.
When put in a situation your body is not capable of withstanding, it feels like a violation.
I will not be violated.
My health is not negotiable.
So no, I won’t sacrifice my health for you.
After all, it is my human right to live a life I love. Completely.