“Do you even lift, bruh?” is not a line you might think would afflict the post-transplant miracle aftermath but it turns out, it’s pretty important.
I do, bruh, but in the beginning it was kind of like how a tiny ant tries to lift an almond. A small item to most but kind of a world to the ant. Since graduating to say, walnut-sized weights, things feel better.
Surprisingly, the muscle memory returns - and this is after a substantial few years of calcium being sucked out of the bones through the process of dialysis for end stage kidney failure which in turn accelerated bone density loss and frequent bone breakage. The muscle itself builds quickly and within a week or so lifting becomes second nature. The feet, once fumbled and falling because of gruelling treatment, find a way to feel rooted again.
Suddenly, I can lift groceries without any kind of concern about not making it from the car to my front door. Perhaps not so unsurprising is the fact that, although the muscle feels sturdy and strong inside, the outside remains unmoved, as though nothing is happening. “Do you even lift, bruh?” it seems to say to me while my smartwatch glares at us both. But everything worthwhile takes time. The inner strength, that rootedness, allows the body to stand.
I’m looking forward to making it into the 15% of people with cystic fibrosis over the age of 40
‘Is that your wife? You should be ashamed’: a charity collector’s anti-immigrant hate in south Dublin
Now that I am free of kidney dialysis, I want others to be free too
In Dalkey I feel the same thing Matt Damon surely did before me: this is where I’m meant to be
It reminds me of how my secondary school choir teacher would tell us to imagine an invisible string holding our heads up when we stood in the school hall on Monday evenings wrecked, despite our passion. This not only improved posture but also breath and resonance. The idea of an invisible string also features in East Asian folk theory. That this thread runs through our life and ties us to our loved ones and our fate that is apparently already predestined and out there waiting for us. With new strength my posture improves along with breath and I suppose then there is a sense of flow, no longer invisible, because taking care of your own body - and being able to do that - is the ultimate act of love.
Experts say the key to muscle building is to go slow particularly in the eccentric phase when the muscle is lengthening under tension. Being a writer, this is the point where I get distracted by the word “eccentric” which is certainly not an optimal response to exercise.
Whoever named this deserves an award: Excuse me, I am in my eccentric phase right now and cannot talk! My eccentricity is weighing me down! I’m lowering into my eccentric phase and I know it’s not what you want but it keeps me alive!
Being distracted is, of course, the perfect way to get injured and yet it is a surprisingly fun task supporting my body to be the best it can be. Together we have been pulled from the brink of death numerous times so this work is the least I can do. The announcement that steps have increased by 150 per cent daily since last year means the watch can hang around for now. What a testament to the miracle of transplant and the importance of properly funded scientific research and healthcare resources this all is.
Last month I turned 38 and ageing is a kind of luxury for an old timer like me. While 62 per cent of people with CF are now living beyond age 18, according to a 2023 Cystic Fibrosis Registry of Ireland report, just 15 per cent are living beyond the age of 40. Now that over half of my time on earth has been dedicated to cf awareness work, I truly believe that statistics exist to be disproven.
Anything is possible.
Last month I turned 38, and this ageing is a kind of luxury for an old timer like me
Life expectancy is now hugely different from what it was 20 years ago when I first began writing about the urgent need to transform, fund and support cystic fibrosis care in Ireland. Birthdays always remind me how far we have come. When I was 18, getting access to the care we needed to live beyond our 20s was not inevitable and we lost so many remarkable people who should be here. Now, with the advancement of proper facilities, transplant care and orphan drugs helping much of the population, it is a privilege to be alive to see how, worldwide, the CF community bet on itself and won.
This story is one of the most powerful examples of patient advocacy driving change internationally in the past several decades but there is more to do. With “old age” comes greater medical needs, the need for more research and funds and time dedicated. Also, there comes a phenomenal joy. Futures, families and love just waiting to be experienced. I’m looking forward to making it into the 15 per cent over the age of 40 with strength, both inner and outer, for the future and all that comes next.
It would be great, if in another 20 years, in 2045, we could stand together and say that CF stands for Cure Found.
