I never expected I’d have to learn how to walk again. That journey took me from writing for doctors and magazines to spending thousands of hours researching health and autoimmune disease. When we have excellent health, many of us don’t give it much thought until those sneaky symptoms start to show, and one day it all comes crashing down. Now, our health becomes one of the most important priorities. When we feel good, we can be more productive and chase our dreams. When our health declines and we don’t feel so good, one of our biggest dreams is just to feel better.
I became a health writer 12 years ago, shortly after graduating with my creative writing degree and getting a diagnosis of the autoimmune bone condition, ankylosing spondylitis. In an effort to improve my health, stay mobile, and help prevent my bones from calcifying and fusing, I spent thousands of hours studying everything from nutrition and naturopathy to conventional medicine and holistic healing. I heard this somewhere, so I can’t take credit, but I like to say I went to “save my ass university”, because pain and illness are some of the biggest motivators.
The symptoms are saying something
If I go back in time to my first symptom, I was around 18 years old after I moved from England to the United States. Out of nowhere, I felt a tightness in my ribcage and chest. When I was breathing at night, I had trouble fully expanding my lungs. It would happen so rarely that I just forgot about it and moved on with having fun, studying for my writing degree, and my other passion of writing music and singing at weddings and events. Back then, my only other symptom was feeling so tired sometimes that I would take a nap in my car between classes, but I thought that was normal for all busy college students.
When I had the first shooting pain down my leg, I thought it was probably just sciatica. The pain started in my spine and would come and go in flares, so I was able to work as a writer and editor for clinical psychologists while also playing shows. Honestly, I felt a little crazy saying the pain was moving around and it was there one day, but simmered down days or weeks later.
Multiple doctors had no idea what was wrong with me until I found an orthopedic surgeon who said: “I’m pretty sure you have ankylosing spondylitis”. Suddenly, I went from feeling on top of the world to lying in bed in agony with something that sounded like a dinosaur.
What is ankylosing spondylitis? Is that a dinosaur?
Ankylosing spondylitis (AS) is a chronic, inflammatory, autoimmune bone condition that primarily affects the spine and the sacroiliac joints, which connect the spine to the pelvis. Over time, persistent inflammation can cause new bone formation and stiffness, in some cases fusing parts of the spine (bamboo spine) and restricting certain movements. Inflammation can also affect the eyes, shoulders, and rib cage, limiting chest expansion and making deep breathing harder. I’d been diagnosed with this pretty complex autoimmune condition, and it was time my health took center stage.
Early in my journey, I tried biologic medication, but I experienced constant flu-like symptoms and my thigh swelled up like a golf ball at the injection site. Not all biologics are the same. While many people with AS benefit from biologics, it wasn’t the right fit for me at that time, so I explored other options. I continued with my search, even spending thousands of dollars at a prestigious medical center, only to be scanned, tested, and nudged into a ‘fibromyalgia class’ where they told me not to take a nap during the day, which wasn’t helpful.
Holistic healing
I saw an integrative doctor, Kirti Kalidas, and ended up writing his book, ‘Untangling the Web of Dysfunction’, unveiling the many threads of the web of chronic disease that keep symptoms flaring. As a dual-trained naturopath and conventional physician, he helped me to realize that I was still living in a rental home with toxic mold in the ducts and behind the AC, which he believed was contributing to my inflammation and worsening my symptoms.
Despite the shiny granite countertops and the charm of the houses we live in, we have to look deeper at the structure and air quality of the building. In one previous rental home with the toxic black mold, Stachybotrys chartarum, I had anaphylactic shock where my lips, eyes, hands, ankles, and airways swelled up, and I couldn’t breathe, so I sat in the car to head to the emergency room.
Here and there, my left knee swelled up, and I had to walk with a cane or a knee brace. I moved out of the house, and the more I studied and the more books I read, the more I changed my lifestyle and noticed improvements. One of the most life-changing nutrition books I read was ‘The Wahls Protocol’ by Dr. Terry Wahls. I started eating healthier, exercising, practicing yoga, taking Epsom salt baths, going to saunas here and there, meditating, and learning to truly love and respect myself, no matter what unfolded.
Learning to walk again
Unfortunately, another setback came when someone ran a red light, and I was involved in a car accident. The impact injured my left hip, and tiny fractures were identified in my bone. Over a year after the accident, one day, I woke up, and my hip bone had collapsed overnight. The area filled with fluid, I couldn’t walk, and the pain was something I can’t even describe in words. I knew something was terribly wrong, but both of the surgeons I went to see said: “You have AS”. Taken aback, I responded, “I know, but I can’t walk right now. Something else is going on. Do I have avascular necrosis (AVN) as well as a labrum tear?” They both said no.
I went to a third surgeon who took one look at me and said: “You have AVN, and it looks like your whole hip bone has collapsed.” We confirmed with more testing and scans, and he told me my muscles and bones on the left side were so weak, it was like I had astronaut atrophy syndrome, along with a labrum tear of the pelvic cartilage. My instinct was right, and I had found my own diagnosis through my research way back in the first couple of months, despite the previous surgeons dismissing me because I also have a bone condition.
I’d written content for over 300 doctors in my professional writing career, but I was still being dismissed when it mattered most. I remained in a wheelchair or on crutches for nearly two years by the time I found my hero surgeon who held my hand and said: “Don’t worry, you’ll be able to walk again after surgery.” I wrote him a poem called ‘Step By Step’, expressing my gratitude.
During this time, I also interviewed leading Marvel movie actor Jeremy Renner about his Snowcat accident and his journey to recovery and learning to walk again. Seeing him run down his driveway after everything he’d been through was inspiring, and I was determined I would do the same one day.
The power of mindset and movement
My road to recovery from major hip reconstruction surgery wasn’t easy due to the extreme weakening of my muscles and bones on the lower left side, but I wasn’t giving up. One leg was noticeably smaller than the other. At first, I couldn’t even stand on one leg or walk up stairs. I went through months of physical therapy, but I just kept telling myself every day would get better, and it was going to be worth it when I had my “driveway moment”. We started with simple exercises like walking a few steps with a cane and then doing some calf raises, stretching, and seated leg raises. I remember leaving some physical therapy sessions and walking back to my car with jelly legs that would barely carry me.
I realized that an even bigger obstacle than my muscle and bone weakness was my mind, because I didn’t trust that side of my body, and I’d learned to operate differently in those two years. I’d lost hope and it was time to get it back. I had to trust the process and myself to make progress. By the end of my therapy sessions, my legs were the same size, and I was walking, running, standing on one leg, doing leg presses, weightlifting, and the rest. Finally, I climbed the stairs to ring that bell, and only days later, I strolled down a staircase wearing a sparkly dress, filming the music video for my original song “Christmas Secret.”
I’ll always have to try to manage my AS and help keep that inflammation under control, given my genetic predispositions, but in a way, I can find the blessings that came from all of this. I might never have become a health writer, studied for all of those hours, or amassed this knowledge had I not been thrown in at the deep end with my health. Being in a wheelchair and on crutches for nearly two years sparked a deeper sense of purpose and an appreciation for the little things in life. I learned that you have to be your own health advocate and listen to your body. My goal wasn’t just to learn to walk again, it was to become more resilient, grateful, and compassionate than ever before.
From my poem After the Storm:
“Maybe it’s empty before it’s full
Maybe there’s something beautiful
Incredible and unusual
Like stones carved into jewels“
