Kindred spirits: how I feel my sister’s pain

When I was a child, I struggled to breathe. My asthma was severe and, occasionally, I had to be hospitalised, like the time I was on the verge of a collapsed lung and I was kept in an oxygen tent, with my arm hooked up to an IV drip – once the nurse eventually found a vein that is, after a few frantic jabs.

In my bedroom, because of my allergies, I couldn’t have dust-gathering posters on my walls or books on my shelves and the floor had to be covered with linoleum instead of carpet.

Propped up by a stack of pillows, I slept in a seated position as lying horizontally triggered my asthma too, but I still woke each night, gasping and wheezing, and in desperate need of my inhaler. An asthma attack can feel like there’s a hand trying to make a fist around your lungs. If you breathe too rapidly, the fist tightens, so you have to take deep breaths and relax as best you can. Don’t panic in other words, even if your body is telling you to.

My sister was the healthy one and she gave our parents far less to worry about. When I was 13 and Carolyn was 16, we moved from Ireland to Japan, due to our father's job as a chemical engineer. In our new home, the grip my asthma had on me loosened, and I went from having to carry a note to PE classes explaining that I couldn't participate because exercise was dangerous for me to being a member of my school's basketball and volleyball teams.

Everything changed for Carolyn as well. While I was living with our parents in Nagoya, she went to a boarding school in Kobe and she was there when, early in the morning of January 17th, 1995, the city was devastated by an earthquake.

It took three days before she could be rescued and the wait was excruciating – aftershocks posed a constant threat and the phone lines were frequently down. Once she was finally with us in Nagoya, I presumed that, as terrifying as her experience had been, she was safe now.

Misdiagnoses

Her ordeal was far from over though. She was tormented that she had survived when more than 6,000 people hadn't. The following year, she was diagnosed with Posttraumatic Stress Disorder, but I didn't fully appreciate what she was going through until, at my insensitive suggestion, we went to a cinema to see Twister. I was absorbed by the suspenseful opening scene, where a petrified family hides in their storm shelter as a tornado wreaks havoc outside, and it was only when it ended that I turned to Carolyn and saw her shaking and weeping.

While I’m not a believer in closure for traumas, over time, and because of her tremendous fortitude, she was able to move forward. I naively convinced myself that she had got her worst experience out of the way early in her life and that all of her days ahead would be brighter.

During the next few years, my health became increasingly robust, but Carolyn always seemed to catch every bug that was going around and her health problems were mounting. In 2002, when she was living in Coventry with her Finnish boyfriend, Juha, she became debilitated by extreme exhaustion – this is actually about as adequate a phrase as “extreme sadness” would be for clinical depression – and she had to move back in with our parents, in Holland and then in America, so that they could take care of her.

After a series of misdiagnoses, it wasn't until 2006 that she was correctly diagnosed with Chronic Lyme Disease, for which there's no known cure. It was probably in the summer of 1996, during a holiday in Pennsylvania, that she was bitten by the tick that vomited the Lyme bacteria, along with a cocktail of damaging co-infections, into her bloodstream.

In her most harrowing stretch, which persisted for years, her exhaustion was compounded by extreme pain. She has described to me how she felt as if her entire body was on fire. She suffered from an acute sensitivity to light and sound so she was confined to her bed, with the curtains drawn and the lights off, incapable of even watching television, and taking a phone call or using a laptop heightened her pain. My parents brought her meals – typically bland because of dietary restrictions – and, on her best days, she could talk to them, but not for long.

Irrational as it was, as our fortunes diverged, I felt as if I had stolen my sister’s luck and I was angry all the time about the unfairness of the hand she had been dealt.

Masking feelings

I vented through writing fiction – my novel, The Fractured Life of Jimmy Dice, revolves around family bonds and the repercussions of chance events. Otherwise, I kept my emotions contained. When I was a child, I had learned that if I attempted to speak during an asthma attack I would have even less breath to work with so I would go silent, but if the people around me could still see the stress I was under, they became stressed too, and in response my lungs would constrict further.

Masking what I was feeling allowed me to breathe more efficiently. My illness hadn’t been nearly as serious as Carolyn’s was though and, at least when I was sick, I had a measure of control in managing it. With her, I was powerless to help in any significant way. I wished that we could switch places, so that I could spare her by taking on her suffering, but, of course, this was self-indulgent thinking, serving only to reassure myself. Even if, by some miracle, such a thing was possible, I doubt I could have withstood what she has.

Over the years, with more effective treatments, her health has hugely improved, but there have been many ups and downs, with periods of remission being followed by her immune system crashing again. In 2010, she moved out of our parents’ house and married Juha. Two years on, after her doctor gave her the go-ahead, she got pregnant. I said I was overjoyed by the news, but, truthfully, my primary feeling was dread. Although I understood her longing to seize every opportunity for happiness, I was conscious that the odds of a miscarriage were extra-high and that the pregnancy could destabilise her progress.

And yet she made it through, giving birth to twins, a girl and a boy. While being a mother to two lively kids would exhaust anyone, the challenges for Carolyn continue to be magnified by Lyme, to varying degrees and depending on the year, month, or day, but it’s been worth it for her, incredibly so.

Carolyn and I have discussed our differing views on luck and calamity. I perceive the world as a minefield, with no pattern to where the mines are placed, so I’m always a little braced for impact. She has faith that everything happens for a reason and that there’s a greater goodness beyond what we can see.

It’s not in me to believe in higher powers, but I have every respect for the strength she has drawn from her spiritual outlook and I’m in awe of how, despite her hardships, she’s wiser for them. She grasps how vital it is to not take anything for granted and she keeps running towards life, approaching adversity with hope. I aspire to be the same way.

Because I live in Dublin, and she has settled in Pennsylvania, we only get to see each other in person about once a year, but, whenever we talk on Skype, I’m quick to ask about her health, usually contriving a casual tone, and then I wait tensely for the response. If the answer is “good” or “okay” or even “not too bad”, I exhale with relief.

Ronan Ryan is a writer from Clonmel, Co Tipperary. He has also lived in France, Japan, America, Singapore, Australia, England, Scotland, and New Zealand. He has an MSc in Creative Writing from the University of Edinburgh and a PhD in English Literature from Victoria University of Wellington. His first novel The Fractured Life of Jimmy Dice is published by Tinder Press on January 26th