My story begins in the early 1980s. I like to think I was a fit young man: I did a spot of weight training, played squash regularly, had a very physical job, and lived at home with mum (mums feed only healthy food to their kids, even if the kid is in his twenties). I was healthy and enjoying life. I thought I could take on the world. And in 1984 I did. I left my home in the UK and went to work in South Africa on a two-year contract. I stayed on after the two years—in fact, I’m still here, 39 years later.
But in 1987, when I was 27 years old, I had what I now know was my first flare up. The pain was in the small of my back, and I had never felt anything like it. My job required a lot of heavy lifting, so I assumed I’d pulled something while working. But when the pain didn’t improve after several days, I knew I needed help.
So, I went off to the doctor, who sent me for X-rays. “No damage,” they said, “just a pulled muscle or ligament.” Weeks went by, and I was still in pain. Off to a specialist. More X-rays. Then I was sent to physiotherapy. And finally, the big reveal (drum roll please): “You have one too many vertebrae, causing pressure on your nerves at the base of your spine. Sorry, nothing can be done. Keep taking pain pills.”
I spent the next few years going through every over-the-counter painkiller made. None ever worked for long. I carried on with my life as best I could. But I gave up all the fun stuff because I physically could not do certain activities anymore. Everything I did had a consequence: pain.
As time passed, I started leaning to the left, then leaning forward as my spine slowly reshaped itself. Without realizing it, I began making slight changes here and there to compensate. One big drawback of my condition was my inability to lie down for any length of time. So I learned to sleep sitting upright in a chair. When driving, I could no longer climb in the “normal” way, as I felt too stiff. Instead, I got in the car headfirst, then carefully swung my legs and torso in. I was unable to turn my head far enough to look behind me, so the side-view mirror became invaluable. When sneezing got painful, I learned not to do it. Yes, really. I didn’t sneeze for 20 years. I could stop a sneeze dead in its tracks and convert it into a small cough in the blink of an eye.
During all this time, I did not go back to the so-called specialists. I had lost faith in them. Was that a mistake? Could I have gotten diagnosed quicker? To this day I cannot answer those questions. At the time I just thought, This is my lot: accept it, learn to live with it, adapt.
I know that at this point, my story sounds like a lot of gloom and doom. But keep reading. I promise there is a happy ending.
All my friends knew I had a “bad back”. Although I think a few of them thought I was putting it on, they were generally supportive. I even got a nickname: Penguin. Why? Quite simply, I walked like one. I was also The Fireman. Over the years, I noticed I radiated heat. Not a very good quality in the sweltering South African summer, but I certainly saved on sweaters and coats in the winter.
By now you might feel that I’m making light of a very serious condition. Not at all. I had twenty-five years of intense daily pain. Mentally, I visited some very dark, lonely places over the years. I’ve fallen down one step (yes, just one) and spent the night in the emergency room thinking, This is it. I’ve broken my back, only to be told I’d bruised my hip, the nurses looking down their noses at me for wasting their time. I’ve been reduced to tears in the local supermarket, just because somebody bumped into my back. I’ve been on planes that hit bad turbulence, causing pain so intense I broke out in a sweat and struggled to breathe. The list could go on.
But in 2011, my black clouds started to disperse.
Strangely enough, it wasn’t the pain in my back or neck that led me to my long-awaited diagnosis. I began having problems with my ankles while walking. For some reason only known to him, my doctor ordered an X-ray for my hips and back along with my ankles.
The day of my X-ray, the radiologist had an intern with her. The intern took one look at the X-ray of my back, and shouted with glee, “You have a bamboo spine, that’s so awesome.” The radiologist promptly chastised the intern for offering up a diagnosis, but she was so excited and couldn’t stop talking. Apparently, she was writing a university paper on bamboo spines and could not believe her luck in having somebody with one turn up in person. Not sure I was feeling so lucky myself.
After another visit to my doctor, a six-month wait to see a rheumatologist, and more X-rays, MRI scans, ultrasounds, and blood tests, I was officially diagnosed with ankylosing spondylitis. It was 2012, 25 years since that first painful episode. I finally knew what was wrong with me. I wasn’t faking it; I had a condition that had a name. I couldn’t pronounce it yet, but it was real.
I promised you a happy ending. Well, here it is.
After months of trial and error with various medications, I found a biologic that worked for me. Since then, I have not had a single flare up. I used to carry painkillers in my pocket like throat lozenges; now I don’t even have them in my medicine cabinet anymore. Yes, I still lean to the left, get in my car headfirst, and worship the inventor of side-view mirrors. But I can sleep lying down. I can sneeze again. I’m no longer Penguin.
Do I look back now and regret all the things I missed out on? I would be lying if I said no. I haven’t exactly fulfilled my bucket list. I never climbed Kilimanjaro or bungee jumped off The Blyde River Bridge. I never took up skydiving.
Then my brain taps me on the back (which doesn’t hurt) and shouts, “Hey you there, you’ve seen all the Big Five game animals more than once. You’ve been to Niagara Falls & Victoria Falls. You’ve been to Disney World. You’ve seen whales playing in the ocean, so close you touched one. You saw Halley’s Comet from one of the best spots on Earth, the Great Karoo.” So, yes, I have regrets, but I have some great memories, too.
I’m turning 63 this year and feel as good as I did in 1984. Okay, okay, slight exaggeration. There are other problems to tend to when you hit 60. But living without excruciating pain makes those problems less daunting.
To everybody starting their diagnosis journey, there is a light at the end. It’s a very long tunnel; I won’t lie to you about that. All I can do is offer a little bit of hope. Medical science surprises us every day. One day you will look back, like I do, and remember the sunshine and not the black clouds.
One last word of wisdom. Do what is best for you. Stop worrying about other people and what they think you should do. You will find out what works for you. You will learn what you can and cannot do. Nobody else can go through that process for you. You will get through this—even if you need to revise your bucket list.