A while ago…

When I found out that I’d be going on a date with a girl with Cystic Fibrosis, I had no idea what to expect. I actually had no idea what CF was, so straight to the Google machine I went! Armed with a wealth of definitions and abbreviations, I was absolutely none the wiser. Sasha and I had already spoken a few times and were getting on really well. I was looking forward to our date, so I stopped trying to figure out the condition and just went with it. If there’s more to figure out, that can be future me’s problem and it can happen later.

We sat in a bar with no name, joking and laughing about men who don’t wear socks anymore, fixie bike owners and people with notions, I found myself having a great start to the night. During the night later, the conversation seemed to naturally steer towards CF. Perhaps after Sasha had coughed again and casually said that it was a CF cough (like I would have any idea how to identify one) she probably noticed the expression on my face. One of ‘yeah sure, of course it is…’ crossed with ‘I have no idea what you’re talking about’. I didn’t want to pry or seem nosey so was not overly eager to broach the topic of CF, but was I was still curious as to what it all meant. Sasha was very open about what CF was, what her daily meds routine is and what impact it had and has on her life. She was sitting in a bar with a stranger but was so open and easy talking about it. This instantly relaxed me and alleviated any fears that I may have created myself. She seemed to be very much on top of things, but also told me about times she was sick and had to be hospitalised.

As an accident-prone person who has sustained his fair share of injuries though all sorts of sports (and just daily wear and tear!), I know what a visit to the hospital includes. X-ray, cast, prescription, home. Her rendition of hospitalisation was completely different though to mine. Hers included getting booked in for weeks to months on end. All sorts of tests and waiting for results. But this seemed to be taken in her stride. She had practically grown up in Our Lady's Children's Hospital, Crumlin, and had made so many friends with the same life limiting illness. Yet, she had not let CF limit her life. Having since met her wonderful parents, I see now that any lifestyle changes Sasha has had to embrace, have all stemmed from them. She was not treated any different from the rest of the kids on her road, or molly coddled and protected from the world. I firmly believe this is what has made Sasha such a strong and confident person. I was seriously impressed, and she was someone that I was keen to have a second date with.

This was going somewhere.

Some time later…

Every day is a learning day, and as Sasha and I continued to date, I continued to learn more and more about CF. I learned that it didn’t stop us doing things like the usual socialising, going to a gig or sitting outdoors in freezing December evenings supporting our favourite rugby team. I learned that although there is a regimented set of tasks for taking meds and inhalers, rotating nebs etc., there is nothing to stop a CF’er from living the same everyday life as everyone else. However, I also learned first-hand that a person with Cystic Fibrosis that gets the flu is nothing like everyone else getting the flu. In early January, just a few months of going out, Sasha spent 10 days in hospital and while I was allowed in to see her, I had to wear a face mask in her hospital room. I really didn’t know what to think, but the nursing staff were excellent. They too had practically grown up with Sasha and knew per personally. They were so lively, so positive and delighted to see her… despite the mitigating circumstances. “This is normal when Sasha gets the flu” her parents reassured me in a light-hearted manner.

I live with the fear that she may not live as long as the average person. She doesn’t. She knows it. I still don’t know how I feel about that. In the eighties, if a CF patient was lucky, they would be diagnosed as a baby or in early childhood, so treatment could start immediately. Today, there has been, and continues to be, huge amounts of research into CF and luckily massive strides have been made. Where once Sasha would be in a hospital ward filled with other CF kids, CF’ers are not allowed anywhere near each other now for fear of infection from the other person’s CF gene type. Medication has improved so much that Sasha’s friends update her with lung function statistics that are frankly unbelievable. All down to modern research.

But Sasha has had to say goodbye to some of her CF friends throughout her life that have succumb to infection or where lung transplants have not been successful. She continues to be very open and doesn’t hide any of this. This is inspiring to me. She made every birthday a life milestone, and now at 35 years old, her family are pretty sure she’s just taking the piss! For me, she can continue doing so as I look forward to sharing the rest of our lives together.

This is definitely going somewhere.

Today…

The reality of her getting sick is still there. Of course it is. When she was sick, there was nothing for me to do and these days very little has changed. I annoyingly ask if she’s had her morning or evening meds, pretty much around the same time as the alarm on her phone goes off! But it seems stupid to think that at one stage I questioned that CF might be a touchy subject, and/or if it was something that I could support. Today, I live with Sasha and it is certainly not the other way around. She’s the one that takes care of me. She has become such a strong and independent person because of her attitude towards CF, not in spite of having it.

The real stigma of CF is one that I had created because I simply didn’t know. As Irish people, we are so keen on fearing the unknown and steering clear when there was simply just not enough information out there to answer my question: “What it is like to live with CF?”. There is ample information on how to diagnose and screen for the condition, and some information on what treatment there is, but I had found no stories of those who live with CF, and certainly none from those who live with someone with CF. So here it is.

Being with a CF’er has a daily routine which doesn’t really impact me all that much. I found it hard to continue as normal when she has a coughing fit, without continually asking her if she’s ok. I used to stop mid conversation, but this will only aggravate your partner more so word to the wise, if their face turns purple - it’s ok, if their face turns blue – it’s bad. Sometimes she coughs at night, but I think I’m immune to it at this stage (that might be a bad thing!). But all of this does come with a big worry that sickness could end all of that. CF comes with life timeline shorter that others, which is impossible to estimate. Having a partner with CF is really none to different to that of anyone else. We are all susceptible to illness, and CF’ers know this more than anyone. Whether your CF partner is a professional body builder or an Olympic athlete, someone who teaches and supports your children in school or someone who simply dances on ice, they will not let CF stop them living their best life and I won’t let it stop me either.

David Brennan