The Power of Perseverance

The last thing you expect as a 12-year-old is to be served with a chronic diagnosis that will impact the rest of your life.

I was just starting high school and one morning noticed that I couldn’t straighten my left elbow. First stop was the general practitioner, then an orthopedic surgeon and eventually a rheumatologist, who told me I have rheumatoid arthritis. Wham! My picture of what my future would look like changed in a heartbeat. Do not pass go, do not collect $200.

I remember feeling ashamed, not because I felt I’d somehow done something wrong, but because I was a “dud”: abnormal and below average. I was mad at my mom when I discovered she’d shared my news with friends of hers, not realizing at the time that my parents must have been wrestling with the diagnosis just as much as I was.

I had to take a break from hockey (a sport I had excelled at during primary school) when my left ankle flared up a few weeks later, even having to withdraw from provincial trials that year. I remember turning away to walk down the school corridor after informing my coach, and being in tears. Strange how certain scenes are emblazoned in one’s memory: I can picture the exact corridor with its uneven cobblestoned floor and noticeboard along the wall.

I also remember how hurt I was a year or two later when my ankle was too bad for me to continue with ballet at the level I was used to dancing. I had worked hard to pass my then-Elementary Royal Academy of Dance exam and was dancing so well on pointe that I’d earned the privilege of performing a solo at our end-of-year concert. Over the second half of that year, as I struggled more and more, I watched my precious solo turn into an “accompanied” solo, and eventually a group dance without me in it.

My life has been filled with a repetitive and never-ending cycle of disappointments and triumphs. Such is the nature of this disease: there are better times and worse times. There is ebb and flow. Times you feel like giving up; and times you feel invincible.

A few examples come to mind from the last 19 years, living with this disease:

Disappointment: No hockey during the season immediately following my initial diagnosis.

Triumph: Being chosen as hockey captain during my Grade 12 year.

Disappointment: Having to quit ballet at 15 years old.

Triumph: Discovering salsa dancing and being part of a performance team 2 years ago.

Disappointment: Having my dominant arm affected and needing more time to write routine exams, during which my elbow often ached.

Triumph: Achieving a distinction aggregate at the end of high school.

Disappointment: Experiencing a major flare-up in both knees five years ago.

Triumph: Completing the infamous Amatola trail at the end of 2019 (100km in 6 days) without injury or flare-up.

A cycle like this has an impact on a person which we cannot ignore, but must learn to deal with if we are to have any hope of a future. I was always an adventurous kid. I was the girl who abseiled 100m down the Cape Town Civic Centre (at night!) as part of a firefighters’ fundraiser my family heard about on the radio. I was the one on our school camp who the river guide picked as the first kid to go eddy-surfing with him as a demonstration for the others. I was the defender who loved the jab tackle in hockey, placing myself in harm’s way to thwart an attacker’s attempt at scoring a goal (and yes, occasionally being hit).

But when your body starts to let you down, unexpectedly, and through no fault of your own, confidence wavers. There is an inherent distrust, hesitation, and fear that you experience whenever your comfort zone is stretched, due to the uncertainty you’ve experienced in the past. Thankfully, these mental and emotional struggles only hit me badly later on when I experienced a major flare-up in my final year of studies at Onderstepoort, Faculty of Veterinary Science.

When my left knee flared for the first time during my year of clinical rotations and I experienced an increase in the bony ache in my elbow and ankle too, I was met with a range of responses from family, friends, classmates, and lecturers. Some were understanding and supportive; while others were downright antagonistic towards me. I distinctly remember a lecturer asking me, “But how are you going to be a vet? How are you going to stand and operate on a patient?”

Needless to say, questions like that from a person in authority only fed the fear that was ever-present in the back of my mind.

Those of us with chronic conditions need to be very careful whose words and opinions we let past our guard. Everyone has an opinion, but not everyone matters.

It’s true: I DID struggle in my first two years of practice. Starting to practice as a veterinarian is extremely stressful with a steep learning curve, even for the 100% healthy and the 100% motivated, and I did it with two chronically swollen knees and the start of depression…but I did it. And joke’s on that lecturer: my boss at my first job used to operate while seated. My boss at my current workplace often operates in a seated position. (Yes, one could argue this is not the best set-up, but barely anything in real life is perfect.)

In that first year of practice, after already having been through a partial synovectomy on one knee and having rehabilitated said knee, my reality included repetitively swelling joints; a job that required a lot of crouching and physical labour; being able to play about half an action hockey game (wearing two knee guards); being able to cycle only about 10 km comfortably; and an unhappiness that made me question my career choice, and had a negative impact on my primary relationship at the time.

In moments like those, the thoughts that crop up are, “Is this as good as life is going to get for me? Swimming in my boss’s pool during lunch breaks to try and mobilise and ease swollen knees?” This disease is, by definition, degenerative, so if that was my “starting point” … Shucks! What would 10 years from now look like? “My joints will always be this bad, if not worse.”

This negative spiral actually culminated in a full breakdown just over four years ago. Perhaps when I’m feeling a bit braver, I’ll write about it in more detail, but for now, know that it was both the scariest and best thing that has ever happened to me. Scariest because it turned my mind, body, soul, and my whole world upside down and inside out; best because there’s no place to go from rock bottom other than upwards and the ashes were a springboard from which an immense about of growth took place.

A few months after rock bottom, I took a full-time job at the practice where I now work; my rheumatologist changed my biologic drug to Enbrel; I met a personal trainer on the beach one day and joined his gym; and I joined the Cape Town Youth Choir.

It was bloody scary: taking leaps of faith while I was still so unsure of myself and unsettled.

It wasn’t easy: I remember being near to tears during my first week at work when I diagnosed a patient with kidney failure and my mind just couldn’t (or wouldn’t) assimilate a rational treatment plan.

It wasn’t comfortable: I pushed through a lot of niggles during my first few months of training with one funky elbow, one funky knee, and one funky ankle. Franco had his work cut out for him since I started personal training sessions scared, sore and asymmetrical.

But I persevered.