In February 1997, my bubble of blissful 13-year-old normality was rudely burst when I developed a serious auto-immune condition, FSGS, which aggressively attacked my kidneys and proved to be resistant to steroids, chemotherapy and immuno-suppressive medication.
After 18 months of endless hospitalisations, major surgeries and nightmare health crises, my kidneys failed and I needed dialysis to keep me alive. My new reality tested me psychologically as much as physically; dialysis only replaces around 15% of vital kidney function. But despite the horror, I was desperate to be back at school, my heart was set on Cambridge University, and I used the anger and stress of my situation to push hard, learning to do my own dialysis at home and reclaiming my life. Unwittingly, finding a way to turn adversity into drive and motivation gave me a mechanism to draw great positivity out of my experiences. 20 years of solo home dialysis later and with a failed kidney transplant attempt behind me, I am a very long way from the 5-10 year life expectancy and dismal prognoses which were so ominously touted by the kidney books I read at diagnosis.
Dialysis does not define me or control me, yet my entire life literally hangs on that machine. Self-care and home dialysis are so empowering; I get to save my own life every single day. My identity as a businesswoman, entrepreneur, skydiver, fitness obsessive, newbie runner, impulsive adventurer and advocate has no time (literally or metaphorically) for the side of me that relies on life support. I rarely have a chance to dwell on dialysis from the minute I wake up until I’m setting up my machine at night, ready to put in two admittedly huge needles and do my seven hours of treatment whilst I sleep.
The World Kidney Day theme this year is women and kidney disease. Having the perfect body, career, family and lifestyle, achieved through rigid self-control, are still held up as a worthwhile aspiration for women (and increasingly men too). I am a woman with kidney failure and no hope of a transplant unless research progresses. I am covered in scars, unable to have children and my domestic life resembles a minor disaster zone. But I can handle waking up to blood all over the floor with an early client meeting to get to; I constantly juggle a hectic working schedule and travel with the need to be at home dialysing for at least 35 hours a week, a task that cannot be delegated, shared or postponed. It’s not beautiful, or particularly Instagram worthy.
Yet my innate positivity and ability to go with the flow has been learned through the ugliness of adversity and illness; it has brought far more than my fair share of passions and joyful experiences. I count myself lucky and would not necessarily go back and press the kidney failure “off switch” even if I could. Every bonus year that I did not expect makes me feel more invincible and less inclined to adhere to cultural norms. Living on life support has unexpectedly liberated me.
I want to hold up to the young women and men of today that life is messy, awe inspiring, devastating and greater than anything you could imagine. Compassion, empathy and humility are powerful human emotions, and these traits are often inherent in people with disabilities and health conditions. They are the true role models, with their motivation, resilience and emotional intelligence. Kidney disease is for life; transplantation or dialysis are not cures. Learning to live with and accept this seemingly fragile reality can perversely breed great strength, yet it’s a strength housed in bodies that are “broken” by society’s standards. These imperfect bodies are still not generally welcome in our workplaces, our playgrounds or in our mass media, where an unwillingness to be flexible, a lack of creativity and doing things “the way they’ve always been done” often gets in the way of embracing and benefiting from the richness of diversity.
My imperfect, fickle body deals with a lot. I have always demanded a huge amount of myself professionally, combined with a strong commitment to volunteering, mentoring and peer support. Time and energy can be bent to your will if you push hard enough and I have an insatiable appetite to try new challenges. I love the juxtaposition of being absolutely dependent on a machine to survive, contrasted with the ability to run my business, climb mountains, skydive and seek out situations where I can find myself on adventures abroad, many miles away from my booked dialysis unit in inevitably hostile weather (yes, there are a few stories in that category!)
So for my 20 dialysis year I am going to push my physical limits towards a new challenge in aid of Kidney Care UK and Kidney Research UK, as the first woman on dialysis to tackle the London Marathon. Whatever my body decides to throw at me, I will use every ounce of my mental strength to get to that finish line.