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A Decade of Transplantation: Being Well and Ill

Updated: Sep 26, 2023

I have a 77 year old liver; the rest of my body is 51. This mismatch of age between a vital organ and the rest of my body does not rest in the front of my mind on a normal day. Nonetheless, every once in awhile it slips into my consciousness and leaves me in wonder. Who was this person who saved my life? What were her experiences? How did she move around on the planet? What did she eat? Who did she love?

Today, on my 10th year transplant-aversary, the passage of time and the miracle of life are alive within me. This anniversary always comes with deep emotion, gratitude, and also the continued processing of loss.

The notion of an infinite time continuum punctuated by the temporality of a short human lifespan, leaves me asking questions about my own mortality and purpose.

How long will I live? Who will be with me when I die? Will I suffer, or will I go peacefully? Where will I go?

While no one knows the answer to any of these questions, one thing is certain: we will all experience this human rite of passage at some point. Over recent years, I notice my own body aging, in subtle, and not so subtle ways. I have chosen to wear these changes like a badge of honour rather than hide my body’s natural processes. Wrinkles and graying hair are what anyone can see on the surface, but thanks to the close eye the doctors keep on me with modern technology, I’m aware of the less visible internal changes, too.

The overarching experience I have of time, is one of longing. There is so much I’d like to ‘accomplish’ and experience, still. This yearning sometimes feels more akin to an acorn-sized alarm clock that has permanently lodged itself into the back of my brain, than a passing desire. On its most annoying days it ticks loudly, “No time to lose”, and a part of me momentarily transforms into the March Hare complete with giant ears, waist coat and pocket watch.

The reality is, that time - and our experience of it - has a different resonance for those living with chronic illness, than the ‘normative’, able-bodied. I am but one of a large population of Invisibly Ill, a group of people who appear well enough, but who undergo weekly hospital visits entailing blood work, or medication, or awkward liaisons with doctors — doctors we’ve known for years who, while familiar with the deepest intricacies of our inner workings, don’t have the time or mandate to ask us how we feel about feeling unwell. We have no choice but to confront our mortality head-on, in a healthcare system that doesn’t have time for our tears, with blunt language that communicates soley in black and white. And, even while we often function well enough, under the surface, there is a difference, and that difference is more than just the shape of our cells or our medical diagnosis. The difference is the burden we carry about what we make our illness mean about ourselves.

Health, in our medicalised world, is considered in binary terms: it is something you either have, or you don’t. Andy Warhol famously said “Health is Wealth.” If you have it, you have power and vitality; if you don’t, you are assumed weak, incapable — you’ve possibly even been called handicapped (I have).

I can assure you, my experience of being well and ill is far from binary; health, or some may call it wellness, is more of a multilayered spectrum. Holistic health is impossible to measure in hard-evidenced, scientific terms; yet for all intents and purposes, the medical system creates an image of its patients in numbers and charts, in labels and assessments. At the end of the day, you’re well or ill, and if you’re chronically ill, you may end up labeled disabled, or vulnerable, or high-risk. Some might even consider themselves lucky to have the label, to help supplement a living allowance if their condition is deemed severe enough. Sooner or later, one might ending up believing not only the label, but all that is implied with its meaning.

When I first wrote about my need for a liver transplant in 2012, it was one of the most terrifying moments of my life. Yes, it was emotionally-complex territory to learn I would die without finding a donor; but what left me horrified was to expose my deepest vulnerability to an audience I assumed perceived me to be strong and capable. I feared rejection. I felt ashamed and embarrassed, not only for an illness that was wholly out of my control, but for creating a potentially uncomfortable situation for those who would have to learn about it. My people-pleasing personality was beside herself with humiliation.

Ten years on, I am still learning how to communicate what is is like, in real terms, to live being well and ill. Even while an embedded fixture in the healthcare system, I believe that it is not only possible to be both a patient and a teacher / therapist, but can make the nature of the work more potent.

One of the miracles of being in a human body is our potential for resilience, adaptability and acceptance. I am proud of the strong and flexible being that I've become through practice over several decades of illness and health. I do not take being well enough for granted, and what day-to-day life lacks in consistency has been gained in self-awareness and compassion. I have learned to be adaptable to my changing needs instead of powering through; that it is more than ok to say No, and that it's impossible to please everyone. In fact, I delight in the fact that I've given up trying. Perhaps most importantly, I am relieved to understand and to have forgiven myself for the many years of self-destructive thoughts and behaviour as a younger person. I have written before about illness as My Teacher — My Teacher who has helped me know myself, who has led me to accept my quirks and eccentricities. I have been challenged, time and time again, to show up and embrace this gift of life.

I bow down to all of My Teachers, and to all of you who have participated by reading along and supporting me in big ways and small. Thank you.

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