Sweetly bitter

The first time we met I was a bona fide walking and talking caricature of a PWCF struggling with poor health. Cue the violins. I had been battling a cold which escalated into trouble pretty quickly. Despite swift and assertive intervention I had nonetheless moved steadily through the three stages of trouble: virus, leading to intense asthma, then onto a chest infection exacerbation. I found it hard to walk between classes, I was short of breath sitting in my chair, I frequently endured big, wracking and wet coughs, and I was bringing up a steady tide of disgusting looking mucus during chest clearance. I felt yucky in every which way. It felt like I had a big, flashing, neon sign above my head proclaiming: This person has CF!  Of course, I would have preferred an alternate sign: This person does NOT have swine flu!  as I was being given a wide berth by my fellow students. With the benefit of hindsight, I now know that someone did in fact recognise the signs of CF I was unwillingly but blatantly flaunting in the wake of my virus. I desperately wanted to hang out at home but I dragged my sorry self out of bed and somehow managed to attend unmissable tutorials over the course of a week. Miraculously, I actually learned something and met a blur of lovely people. I went home in marginally better shape than when I arrived.

The next semester my fellow students and I met up and did it all again but this time I was trouble free! Sufficiently oxygenated and energised I took more notice of my surroundings and the people I was studying with. The blur of people solidified into individuals. A few people gelled especially well with me, one of the female students in particular. Mostly, I thought that she was super friendly. She was happy to sit next to new people, have a chat and learn about her new acquaintance. We got to know each other over lunches and strolls to class.

Not too long later we met up again for a third time. I stayed in the same building as my new friend and we spent even more time together one-on-one travelling around our activities and to-and-fro. I really enjoyed her company and our friendship grew.

Throughout these three separate chunks of time my subconscious catalogued little observations about my new friend that on their own meant nothing, but when taken together, meant a great deal. For a long while I considered each piece of information separately and I rationalised away all of my observations. Food seemed a bigger priority for both of us compared to everyone else. We were always snacking. I thought: No girly salads for her. She’s got a good appetite, nice to see!  She had a “friend” with CF and when CF cropped up in our studies I appreciated some of her deeper insights into life with CF. How lovely that she has knowledge about CF and a balanced view!  Like me, she coughed a bit more than “normal” people – a little maintenance cough every 15 minutes or so that I slowly began to register and learned to expect. She must have post nasal drip or asthma or something… but at least I’m not the only one coughing!  She had been quite unwell before one of our get togethers. That’s a shame she was so unwell. How unlucky to be struck down for a few weeks because of a cold!  She took escalator and lift options unlike others who bow to peer pressure and use incidental exercise to save face. I LOVE the fact that I don’t have to initiate what others see as a “lazy option”!  Etcetera. It took a bigger moment to open my eyes to what was right in front of me and to finally understand that the pieces of data my subconscious had patiently logged were not coincidental, but interconnected, part of a bigger whole.

On the night of my epiphany we went out to dinner as a large group. At some point I glanced at her and saw her take some pills. She was very discreet about it, much more so than me, but once I had seen that moment I couldn’t un-see it. That tiny glimpse was the trigger my subconscious needed for all of its careful observations to rise to the conscious part of my brain and coalesce into clarity. A stunningly novel idea burst into my brain – that she ate loads with pills, coughed a lot, was knocked for six by a cold, took escalators and knew about CF all because…. she was also a PWCF. My conscious brain got stuck in a loop. One moment I was thinking: Hang on a just a second, could she maybe, possibly, perhaps, feasibly, conceivably, perchance… have CF?  The next I was thinking: No, no way. You’re only seeing CF where you shouldn’t because you have it yourself. She’s probably totally fine. Totally! Fine!  The two sides of my brain warred back and forth while I completely zoned out for the rest of dinner. Strangely, it seemed to me that she knew the question mark had entered my brain, she knew when it had entered my brain, and she knew that the question mark was gathering momentum. We travelled home from dinner together and things were pretty stilted. When we parted company at the lift I knew, that she knew, that I knew, that she knew, we both had CF. I realised that her epiphany had come much earlier than mine, probably during our first week together and that I had been living in ignorance for some time. I went to my room and called Dave. I laid out all the evidence my subconscious had graciously gathered into a neat and tidy PowerPoint presentation and he agreed that either she had CF or I was living in an alternate universe. As I was doing chest clearance that night I imagined her doing the same in her room.

While getting ready for the day ahead the next morning I ummed and aahed about how to handle the situation. I knew I couldn’t directly ask if she had CF – that would put her in an awkward position. I could either feign ignorance, which seemed pointless, or I could say something and reveal a little piece of myself to her, come out of the chronic illness closet. On our way to our day of work I could feel tension between us. We had done a U-turn in our friendship and found ourselves back in small talk territory. I wanted to broach the topic but I was scared of doing so and I let each opportunity to say something slip by until the very last minute. With our destination looming close I blunderingly changed the topic at hand and blurted out something to the effect of: This may seem a bit random but I want you to know that I have CF.

And we were off. I don’t even know how many years it’s been since then. We have become pretty close. I don’t have a huge quantity of friends but I have a huge quality of friends and she is up there with the best of them. We don’t see each other often as we live in different states but we text long essays to each other frequently. When we do meet up we choose a restaurant that will let us sit there for hours catching each other up on our lives

We have been given very different paths to walk when it comes to CF. She is facing a new and huge challenge that I have not had to tackle personally. I don’t envy her path, and I don’t expect her to envy mine – CF is a challenge at certain times and in certain ways no matter your exact path.

Having a friendship with a PWCF is sweet, and yet, bitter. Sweetly bitter. It’s so good because they just get it, viscerally, what it’s like to live with CF. But it can be so hard because you just get it, viscerally, when life with CF becomes tough for them. For me, I find it difficult to witness a tiny snippet of the enormous toll CF takes on her body, to accept that this is her reality right now, that there is no break for her and there is nothing anyone can do to fully ease that burden. For me, at times, I worry about her future, I wonder if the Universe plans to take her away from me before I’m ready. Sometimes I let myself feel the emotions this prospect stirs up. For me, I try really hard to detach myself and let her walk her own path without commentary from me. I hope I achieve this more often than not. For me, I extrapolate what I see of her experience and wonder if and when Dave or I will experience the same things and what that will be like and how we’ll cope?

For me, being good friends with PWCF involves a unique pain. There’s no use pretending – to myself, to the people who support me, to my readers, or to this particular friend herself – that it isn’t painful. Unlike physical pain, I’m not looking for a solution, to avoid it or to minimise it. I’m acknowledging it, sitting with it when I need to and containing it when it’s not appropriate to be upset, whilst enjoying my friend’s company and supporting her as best I can in spite of it.

I believe that her life is going to change for the better. It’s a matter of when, not if. Do me a favour would you? Send her some positive vibes right now. Go on, do it! The past few weeks have been super freaking tough for her and her support crew. Despite some significant challenges, she hasn’t been beaten. She’s looking to the future. She’s harnessing her oh so important stubborn drive to survive and sternly telling CF she’s not done yet. She’s bravely taking the first important steps down the road to her new life. And what an amazing life it will be!


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