Indivisible Alphabet

Gemma Kent does battle with her identity, and chats with Evan Scully, competitor at this year’s Dublin Marathon.

Cystic Fibrosis (CF) has been on my mind a lot these past few weeks. Just over a month ago, the CF community was in uproar over comments made by Pat Kenny on his midweek show on TV3 in which he posited a relationship between the high levels of CF in this country and our failure to provide women with a safe means of getting an abortion. In response to his claim, Cystic Fibrosis

The Irish Times

Ireland (CFI) launched a public statement that both acknowledged the good work of a long-time CF campaigner while also firmly condoning the horrifically thoughtless — and untrue — remarks. What perhaps worried CFI more than the reckless falsity of the claim was its underlying message: that, given the chance, any sensible person would abort a child they were told would be born with CF; that somehow these children lack the possibility for a worthwhile life. In their responding statement, CFI closes with a reminder that “people with cystic fibrosis are living increasingly longer and fuller lives”, and that the recent all-clear for government funding for drugs like Orkambi and Kayldeco “should provide reassurance to parents who have recently been told their child has CF”.

Around the same time as this ordeal, another noteworthy event was taking place, albeit one that wouldn’t feature on national news or cause any degree of uproar: I was, at last, turning twenty.

The pride at reaching this age is a universal thing — no more teens! — though it is not without its sombre side (no more teens…). For me, with the milestone falling just four days after Kenny’s comments, the resulting self-reflections inevitably took the form of a forbidden trip on Google, to pit the question of newly-reached age with the question of possibility. And while I know, I know, I shouldn’t mope over projected life expectancies because every-case-is-different-says-my-mother, it’s hard to stop yourself doing the math, especially when the age you’ve reached today and the age you’ll reach at the end are both so round, so easily divisible. Before you know it, you cancel the zeros, find the greatest common divisor, decide last minute to be justifiably optimistic. And you discover, like the song says, you’re already halfway there (all while keenly aware that you are being explicitly oblique with your readers about why you are doing this, though they may well be putting two-and-two together).

My relationship with CF has been characteristically mixed-bag, if my indirection didn’t already make that clear.

My early years were spent in unashamed divulgence, entertaining my primary and secondary school classmates with a never-ending narrative about my diagnosis, and jokingly suggesting that a failure to take pills before I eat would result in my untimely demise (It will! …no, it won’t).

Now, in college, though I am still eager to answer any questions put to me on the matter, I seem to have decided not to bring the topic up of my own accord: the bulk of my closest friends only found out in May, when I was, you could say, caught drug-handed. This hesitancy to be ‘out-there’ about the whole thing is far from fuelled by shame, or fear of rejection. On the contrary, my having CF is something I wish everyone knew about me, because then I wouldn’t have to feel awkward when having group meals, or when I grimace because you’ve unsheathed a cigarette. But this disclosure is not easily made: I am anything but recognisably sick. And this invisibility doesn’t just impact on how the world sees me, it also influences how I see myself. When the world can’t remind me I’m perpetually ill, and my body for the most part also respectfully declines to do so, then I am bestowed with the muddy privilege of a superman-style dissonance in personality. I become two people: the UCC arts student who has seven needy cats and loves garlic mayo, and She Who Has Cystic Fibrosis.

And then Kenny’s comments crept up on me, right as I aged, and it was like a numbing leg coming back to life: suddenly, I was the antithesis to those divisible ages that shadowed me. Suddenly, I was the indivisible whole — arts student and cat-hater and PWCF (Person With Cystic Fibrosis) all in one breath. And I realised that when people talked of babies with ‘certain disabilities’ and asked if those babies would be better off not alive, those people were talking about me. But also: they weren’t. How could they be? That peculiar dissonance wouldn’t stop yelling in my ear. You are the full alphabet, it screamed, A to Z, not to C to F. I am more than the stereotypes could ever afford me: I am not wholly convinced I am going to die at forty. And society commends this kind of brazen denial in the face of hardship, but I have to ask: what are the costs for declining to accept an unavoidable, indivisible, part of who you are? And if I want to avoid those costs — as all who wish to be fully-fleshed human being should — then what do I do about a definition that locks me out? The answer: re-write the definition.

I first heard about Evan Scully, fellow PWCF and recent competitor at the 2017 Dublin Marathon, just days after I read Pat Kenny’s comments. His story, right at the moment when I felt most conflicted about myself and my identity, was the perfect counterbalance. I got in touch at once.

Evan boasts an impressive CV, working as a nutritionist and sports therapist with some of the world’s leading Olympians — running the Dublin Marathon was the natural next step in a long line of successes. With this in mind, I asked Evan how he came to his decision, not just to run the marathon in under three hours (a feat only 2% of the world’s population can attain), but why he chose to aspire to become the fastest person in the world to do it with CF.

“I chose to run the marathon when the idea was planted in my head just after Christmas 2016,” he told me. “The original plan was to complete it in under three hours, just because that sounded good, but as the weeks went on I felt I needed to challenge myself to a harder goal. I looked up what the fastest time to run a marathon by a person with CF was. 2.47.47. Target set.”

Credit: The Mirror

More than just a desire for personal achievement, Evan also cites his determination to upturn our notions of what CF is. “The marathon record is just another way to prove CF wrong,” he tells me. “I never wanted people to know I had CF, not until I got annoyed about the fact that all you hear on the subject is doom and gloom. I started to wonder what it would be like for parents whose baby had been diagnosed with CF to google what that was [as] there is rarely a good news story. Rather egotistically, I figured that mine was a good one.”

What struck me about this response was Evan’s ability to identify both as someone with Cystic Fibrosis and as someone who had the potential to make a difference. Evan acknowledges that there is “nothing in [his] anatomy that makes [him] different from other people with CF”, having been born with the Delta F508 strand – the most common in the country and, incidentally, the same strand as myself. What separates Evan from other people with CF, he says, is his driving force and how he views himself as an agent with the possibility to be, in his own words, “the best that I can be”—not to mention, as anyone in a similar situation can verify, his fixation on staying healthy: “I think fear plays a role in my obsession to be healthy. [Because] the thought of deteriorating—of becoming what the stereotype of a PWCF is—makes me feel nauseous.”

What I like most about Evan’s story is that he is a resounding example of the kind of boundless possibility I came to think was denied to people like me. In giving CF the middle finger through completing the marathon (finishing only nine minutes outside the three-hour window this time around) Evan is a reminder that there is more to someone than their genetic makeup, and that there is always the possibility to go beyond the limitations others place on you, whether that be through life expectancies or dated stereotypes. In his closing words to me, he draws on the example of runner Roger Bannister, the first man to run a mile in under four minutes. Before Bannister overcame this feat, it was considered physically impossible; now, his time has been broken on multiple occasions. That’s what Evan wants to do with CF, when he undoubtedly makes another go at beating the record: “When people with CF and parents of a baby with CF see that I can run a time that less than 2% of the world’s population can run, I hope it paves the pathway for someone else with CF to run faster than me.” I confess, my resilient readers, I certainly won’t be the one to break this subsequent record (allow me this one limitation), but I can only hope that Evan’s aspirations are proven true elsewhere. In the meantime, my plans are focused on digging CF out from under the carpet, looking it square in the face, and resolving my long-fought conflict with it: no more dividing the indivisible or submitting to the impossible; from this day forth, only the full alphabet will do, and that includes C and F.

You can follow Evan on Facebook @evanscullyCF