Chronic Pain Doesn’t Have to Last Forever
Pain is a sensation that everyone has to deal with at one point or another in their lives, but you don’t really know it until you live with it day in and day out for years. Anyone who’s had the uhh pleasure, no, the experience of chronic pain can attest to that.
You may have had a brush with pain, it may have even been really intense and I’m not discounting your experience, but chronic pain is different, it’s a bit like a relationship:
First, there’s the honeymoon phase when you’re not really sure how long it’s going to last.
Next, there’s a commitment to live together for a while and see what happens.
Last, you either break up or die together.
Okay, maybe a slight oversimplification, I left out the kids, holidays, fights and retirement.
I was thirteen years old when my journey with chronic pain began and just like all relationships at that age, I thought we would be together forever. Many people with chronic pain never get the chance to break up with it, the reason I’m writing this article is to tell you that it’s possible.
We used to hang out every single day. Occasionally, it was every minute of the day. I’m not going to lie, it did become a bit much sometimes. Like any relationship, it’s nice to have some space to breathe. Clingyness can cause things to get uncomfortable and annoying.
It started on a Saturday morning playing soccer, I was running up the field to get in position for a corner kick when it felt like a bolt of lightning struck my right leg. I was substituted off and just like that, finished the last competitive soccer match of my life.
The next day at the physiotherapist, she pointed out that the muscle around my right hip had wasted away. She sent me for an X-ray which showed that the texture of the bone wasn’t what it was meant to be. An MRI followed shortly after and the radiologist called my mum and me into his office. He pointed at the screen to show a tumor about the size of a tennis ball. I didn’t know what a tumor was but mum started crying and I got scared.
I saw an orthopedic surgeon who booked a bone biopsy where they stuck a 30cm needle through my right glute muscle and into my hip. I was on minimal painkillers so it felt rather uncomfortable. The diagnosis came back, it was cancer. An appointment with an oncologist confirmed it was a type of bone cancer called Ewings Sarcoma and treatment started right away.
The protocol for this type of cancer was 4 rounds of chemotherapy, followed by major surgery, followed by another 10 rounds of chemo. Chemo was nasty — I was so sick, lost my hair, immune system and much more. I could go into more detail but for the sake of this article I’m going to focus on pain and there was plenty of it. In the surgery, they removed half my pelvis, irradiated it and put most of it back in with enough metal plates and bolts to build a toy car.
After waking up from the 10+ hour surgery, there are no words for the intensity of the agony I experienced. I didn’t know where I was. Screaming, scared and surrounded by machines that were keeping me alive. It didn’t last long, they put me under again. The same thing happened the next day and I don’t remember the 2 weeks that followed.
Following the surgery, I was prescribed 6 weeks of full bed rest to recover. This was the hardest time of my life. From being a sporty kid and having fun with friends, running around every single day, I turned into someone who wasn’t even able to get up to go to the toilet. How did this happen to me? I was on enough painkillers to knock out a family of elephants and even if I could have got up to go to the toilet, I was so blocked up from the painkillers that I probably couldn’t have gone anyway. Anyone with experience on painkillers knows exactly what I’m talking about.
During the 6 weeks bedrest, there were times when I wanted to die. It was all too much for my 13-year-old brain and body to deal with. I couldn’t understand why this happened to me and I was angry. One day when no one else was in the room I took a hospital sheet and tried to strangle myself. I wanted out.
Little did I know that this method wouldn’t have worked anyway, I would have passed out and woke up where I started, still in bed. My mum walked in, saw what I was doing and flipped out, that’s when I realized that this wasn’t just about me. I had to live for my family who were doing everything they possibly could to keep me alive.
After 6 weeks, 2 physiotherapists walked in with a walking frame to get me up. They helped me slowly shimmy my body to the edge of the bed where I sat for a few minutes with my legs hanging off, allowing time for my blood pressure to adjust. Next was one of the single most rewarding, disappointing and painful moments of my life.
I stood up for a total of 1 second before the pain was too excruciating to continue. I don’t know why I expected any different, there was a part of me that dreamed of waltzing right out of the hospital then and there. Turns out my fantasies of being Superman weren’t true after all. At that moment, the strong painkillers I was taking did absolutely nothing.
Over the next 3 weeks, the progression was slow. Each day I would walk a little further with celebrations for each milestone. The first time I walked to the toilet to pee, the first time I walked outside the room and the first time I walked all the way down the hall to the entrance to the children’s ward.
They moved me from the Adult’s Hospital where I had the surgery back to the Children’s Hospital to continue with chemotherapy. I would continue my rehabilitation while they pumped poison through my veins to kill any remaining cancer cells. The process was slow but eventually, I upgraded from a walking frame to crutches which I used for longer than I would have liked until I upgraded again to a walking stick.
Chemotherapy wore me down and after 9 of the 10 prescribed rounds, I was skin and bone. Not only that, an infection had taken hold in my hip and they were no longer worried about the cancer. Unless they did something quickly, this infection would be a nightmare. And it was.
This is the first time I’m typing out this part of the story, usually, I wrap it up quickly with a long story short statement and the next 2 years of my life sucked even more but I won’t do that here.
One day after the ninth round of chemotherapy I was walking at home when out of nowhere my pain level skyrocketed from the usual 5 or 6 to an 18.7 out of 10. We rushed to the hospital where a scan showed that a piece of my hip had broken off due to it being weakened by the infection.
This was a major blow, not only did it mean more surgery, in a moment I went from being 2 weeks away from finishing treatment to starting a whole new treatment for the infection. One of the worst parts was that we didn’t know how long this treatment would take.
My whole family including me were devastated. We had been through the wringer and now we were stepping off one battlefield, straight onto another. Weekly blood tests showed a marker for inflammation in the body called C-Reactive Protein (CRP), it told us how strong the infection was.
Treatment started with IV antibiotics and surgery to remove the piece of bone that broke off. They actually brought it to my hospital room in a jar afterward, at the time I didn’t want it but it would be kind of cool to have it now. The infection raged on because the antibiotics weren’t reaching the site of the infection. This was due to the original surgery where they removed my hip and irradiated it, which killed all the blood vessels in the bone, before replacing it.
The Beginning of The End
They had to think outside the box so they removed the hip replacement and inserted a cement block infused with antibiotics. The hope was that by inserting antibiotics directly into the site of the infection, it would not only kill the infection but also keep the space open so they replace my hip again afterward.
This was the last-ditch attempt to get the job done, two different cement blocks with two different antibiotics. Nothing worked. The only remaining option was to remove all foreign material in my hip, continue with the IV antibiotics and hope that it went away.
During the time treating the infection, I was on high levels of painkillers, antibiotics and who knows what else. I had 20 surgeries and understandably, my memory of this period is hazy at best. Finally, with the removal of all foreign material, the tests for CRP were starting to show favourable results.
After almost 2 years fighting the results came back that we had won, the infection was gone. The day I stopped IV antibiotics after continuous treatment, every 8 hours was momentous. Especially cause my parents had to learn how to administer it otherwise I would have been in the hospital for that entire time.
Next was the day they removed my portacath, which is a device implanted under the skin directly into an artery near the heart for people who require continuous IV treatment for chemotherapy or other treatments. Then there was the day they removed the portable hospital bed from our living room because I could finally walk upstairs to my bedroom.
One step at a time, one day at a time.
Returning to school after missing the better part of 3 years was an interesting challenge. I felt like an alien, for me, the whole world stopped for 3 years but for everyone else, it kept going. My mantra at the time was “one step at a time, one day at a time” which is about all I could manage. I questioned the importance of finishing high school at all and the amount of pain that I was in did nothing to help.
I was still taking large doses of painkillers until they stopped working. The pain specialist gave me 2 options, to increase the dose or get off completely. After weighing up my options I cut my dose in half for a week and then went cold turkey. I felt sick for about 3 months but after that, I woke up one morning and felt like a fog had lifted, that’s when I could start recovering.
A New Beginning Managing Pain
Up until this point, as you can imagine life had been pretty painful but I was taking painkillers which took the edge off. After getting off painkillers completely, there was an entirely new education that was about to begin. I had to learn how to live my life in constant pain.
To be perfectly honest, if I hadn’t found wheelchair tennis in December 2006, I don’t know where I’d be right now. The first time I sat in the wheelchair, it sparked something inside, as if it brought me back to life - it gave me a purpose and something to dream about. I’ll go into more detail in a future article but long story short… I played professional wheelchair tennis until February 2019, competed for Australia in 2 Paralympics London 2012 and Rio 2016, as well as reached a career-high ranking of 1 in Australia and 8 in the world.
Despite playing wheelchair tennis, I wasn’t completely wheelchair dependent. For a time I walked everywhere I went, I was just in a lot of pain. When I moved to the University of Arizona in August 2010 to study and play on the wheelchair tennis team, the campus was massive and made it impossible for me to get around. I’d get back to the dorm after class and by 2 or 3 in the afternoon, I had no energy left. That’s when I made the decision to invest in an everyday wheelchair.
Many people look at wheelchair users with pity in their eyes, what they don’t understand is that a wheelchair provides freedom to those who need it. Before the invention of the wheelchair, people who couldn’t walk were either stuck in bed or had to crawl and there was nothing they could do about it. When I started to use an everyday wheelchair, my life changed. Instead of being exhausted by the early afternoon, I had enough energy to study and socialize (party) well into the night.
I used that wheelchair any time I had to walk further than 100 meters. If I was meeting friends at a restaurant and couldn’t finding a parking spot within that range, I’d use the wheelchair. Even if it was in that range, I’d have to bring a cushion to sit on because they removed the sitting bone from my right side. That means my tailbone is in direct contact with any flat surface and if that’s a hard surface I’d be so uncomfortable I couldn’t focus on the conversation.
The pain was never the same on a day to day basis, some days I’d wake up and it was a minor awareness in the back of my mind. Other days I’d wake up and I couldn’t think of anything except its presence. It kept me on my toes and meant that every day was a constant juggling act.
Saying Goodbye to Chronic Pain
Over the years I learned how to manage pain, it involved a constant cost-benefit analysis. Before starting my day, I’d have a certain amount of energy which depended on the amount of pain I was in. I had to figure out how to live my life to the fullest and balance that with rest so that I wouldn’t burn out. As an athlete, I learned to monitor my body and pay attention to what I was putting into it as well as the results from that input.
I started meditating to become more aware of my internal state and learn to regulate emotions. I learned about inflammatory and anti-inflammatory foods, I noticed a huge difference over long periods of time experimenting. I learned about other ways to reduce inflammation like walking barefoot on the earth. It became a mild obsession as I dove deep into the rabbit hole but I didn’t think my pain would ever actually disappear.
Another way I managed pain was by smoking Marijuana. As an athlete and due to its illegality in Australia, this was a touchy subject and I’ve never spoken about it publically. I never smoked near or during competition as per the rules but it was an excellent method of pain relief when I really needed it. There were times when the line between self-medication and abuse was very thin, something that I will write about in a future post but as of now, I haven’t touched it in over 2 years.
There were many other things I did to assist the process of getting out of pain such as massage, float tanks and releasing stored emotions, but the one practice that made the biggest difference was standing meditation. Learning how to release tension and invite tranquility into my body while standing very still, is the single most important practice I did to heal my chronic pain.
The first time I tried standing meditation, it was agony and I could only stand it for less than 2 minutes. Being still in a standing position was already the most uncomfortable thing for me to do but doing it intentionally for increasing amounts of time, at first I thought my teacher was crazy. I had all kinds of excuses and I wasn’t very diligent with my practice for the first 6 months to a year. I did it every once in a while but I was a master procrastinator.
It wasn’t until I started noticing results that I really dedicated myself to the practice but even those results came with a lot of pain. “One step at a time, one day at a time,” I kept going and started letting go of the label called pain, rather I observed it as a moving sensation instead of a specific thing boxed into the word pain.
Like they say about e-motion = energy in motion, the sensation of pain is also in motion and is never actually stagnant. Some days it’s worse than others. I spent a long long time running away from feeling it, with painkillers, marijuana, changing my seating position and so many other things.
When I stopped running from it and embraced it instead, it started moving and changing. One day after my practice I walked outside into my backyard and as if struck by lightning this thought entered my head “I’m not in any pain right now”. From that moment onwards I didn’t have chronic pain anymore. I still have pain in certain positions and when I’m very active but most of the time, I’m pain-free.
Now I’m putting my time and energy into helping others find their own freedom, whether it’s healing from cancer, chronic pain or mental illness. This is what I choose to do with my life, my purpose so to speak, so if you are in need or know someone who is, send me a message and let’s find your pathway to purpose.