“You have a choice in this world, I believe, about how to tell sad stories, and we made the funny choice”
– The Fault in our Stars, John Green –
The past couple of months have been a real challenge for me. One of my best friends struggled to survive until a life saving lung transplant. Unfortunately, the long hoped for lungs did not materialise, the transplant did not occur, and she died recently. It was an epic final journey for her, her family and her friends. The experience has affected me deeply.
Whilst CF did not define Sam, it doesn’t define me, and it didn’t define our relationship, CF did play a large role in our friendship. Of course it did. Of course. There is no escaping CF when it’s written into your DNA. It’s a burden which we shared and it knitted us together more strongly than otherwise. CF itself does not deserve to be glorified, but our friendship does. The struggles of CF don’t need to be dwelled upon, but there are many moments or experiences I had with Sam as a direct result of CF which I remember fondly, which bring a tear to my eye, and a smile to my lips. Make yourself a cuppa and settle down in a comfy spot because this post is a long one!
I am beyond thankful she allowed me to see her and support her as best I could in the hard times. I believe she allowed me into her struggles so fully because I had insider knowledge. She didn’t need to explain and she couldn’t hide things from me so there was no point even trying. It is a privilege when someone lets you in so you see them utterly vulnerable. It is a gift in return when you can be with that person in the last stages of their life, but remember them as they were in their prime. It’s something special, but it’s really hard to achieve for both parties and there isn’t a rule book. I did a lot of second guessing: is this ok or is that not ok, should I visit, how long should I visit for, should I talk or be quiet, are you huggable today or should I hold your hand or pat your knee, how much time do you want from me and how much time is too much, when do we say what we need to say just in case things don’t have a rosy ending? Somehow Sam and I got through this delicate dance. Not perfectly perhaps. I would like to have talked less and just sat with her the last couple of times I saw her but Sam and I were not programmed to shut up around each other. In ICU, surrounded by every conceivable machine, with her personal nurse and her dad standing guard, after whispering to me that it’s best that she didn’t talk, she simply couldn’t help herself and asked how I was. How do you answer that question when things are far from ok, and you are not ok, but you have only five precious minutes to spend with one of your closest friends, and it’s the last five minutes you’ll ever have although you don’t know it yet? I had a million desperate thoughts spinning through my mind. I immediately longed for a script straight out of Grey’s Anatomy so I could select a perfectly honest, touching, yet not overwhelming, but oh so witty response. I chose this eloquent reply: “I’m doing pretty well. What’s that thing on your head for?” Somehow, I suspect I won’t be getting a gig on the script writing team anytime soon.
She named all of her entourage. She had a Bertie (oxygen concentrator) a Puff (oxygen cylinder), and once had a doomed-right-from-the-very-start cannula called Alfred Hitchcock. I was hoping her ECMO machine would be called Elmo. Unfortunately I was never able to gauge her reaction to my stunningly brilliant naming suggestion.
She brought her own fridge with her to hospital. Yes, you read that right. A fridge. Filled to the brim with her dad’s home cooked meals to keep her healthy and strong.
Her hospital bed space was described as “interesting” by the senior physiotherapist. I’m going to select “borderline chaotic” as my description. She had every surface filled with all sorts of stuff. Tissues, sputum cups, medication, medical devices, books, puzzle books, phone, cards, flowers, photo frames, lip balm, hair brush, a gazillion juices and yogurts and high calorie drinks and so much more. The lunch ladies always had a mild panic attack about where to put her food tray. Sam let them panic and calmly waited for them to give in, yet again, and place her food tray in the usually strictly forbidden zone at the end of her bed.
Sam found herself in a pickle one day. With a recalcitrant Alfred Hitchcock in one arm, a drip pole to drag around, her mobile phone to carry AT ALL TIMES in case she received The Call about shiny new lungs, as well as her newly acquired friend Puff, she ran out of hands to ferry things around. Dave (who never needs an excuse to go to Bunnings) happily sped off and bought some Velcro to attach Puff to the drip pole. Just like that, Sam was able to roam where she wanted. Sam was obviously a complete trend setter as I’ve since seen other people with their own Puff attached to their drip pole.
Freshly ambulant, she roamed outside the hospital and down to a tranquil courtyard. She must have been really rocking her pyjamas and oxygen prongs because she unfortunately caught the eye of a passing patient (AKA The Stalker). The Stalker mooched over and in flagrant disregard of Sam’s clear oxygen dependent status lit up a cigarette about two meters away. Sam asked him to move away and he did so with many apologies. Still within talking distance (ie: nowhere near far enough) he proceeded to tell Sam his life story and tried to elicit hers. Sam skilfully extricated herself and her entourage of machines and escaped back to the safety of the ward. Whereupon The Stalker visited every ward in the hospital looking for her. The nurses had to remove Sam’s name from the patient board and keep her hidden behind curtains lest The Stalker find her, causing Sam to hit him over the head with Puff, or ensnare him in her long loops of tubing until security could come and cart him away.
Sam was also a trend setter in hospital fashion. It turns out that having tubes stuck into your chest renders standard pyjama tops or T-shirts useless. A hospital pillowcase can be fashioned into an extremely fetching tunic. So fetching in fact, that nurses came from far and wide to admire The Tunic. As Sam’s mum put it: “If they didn’t want us to cut up the linen, then why give us scissors?” Why indeed?
There are at least 26 separate reasons why having a shower in hospital is such an effort. One time Sam worked up the necessary energy and patience required to have a shower and wash her hair – a simply extraordinary feat. The very moment she had dried her hair and was enjoying the clean feeling with her slippered feet up, she was escorted to the sleep study department where, without delay, they proceeded to cement a myriad of electrodes onto her scalp. And promptly dirtied her clean hair.
Earlier this year Sam and I were talking about the possibility of her recovery, getting home to Canberra and being home alone while her family was out. The conversation went something like this:
Me: They can set you up with everything you need before they leave so all you have to do is stay alive.
Sam: Yep. And if I have a problem doing just that one thing, I can call 000.
We found this highly amusing and had a giggle and then a coughing fit together. As you do.
Nothing reveals who your true friends are like a witnessed vomit session. During one of my visits Sam had a bit of a chuck. After I had located vomit bags, tissues, and water from her aforementioned almost chaotic bed space and buzzed for the nurse, she had recovered a little. She said: “I’d say sorry but I know you’ll tell me there’s no need to be sorry”. She knew me well, and she was right, there was no reason to be sorry. And then she had another chuck.
Whenever Sam was admitted I’d have contact with her every day. My classic greeting was “How art thou?” which Sam learned to expect and enjoyed. In return I would get an essay. A text message that went on and on and on and on, cost her about $24 per text, and gave my thumb a cramp from all the scrolling. I loved those texts and always looked forward to the next instalment about the Nurse From Hell (NFH), the latest catastrophic fail from the kitchens (there were so many!), how Alfred Hitchock was faring, or the cute intern (Dr James) which made the hospital stay totally worth it. So much so, that for about ten seconds, Sam seriously contemplated an extra trip to emergency just to gaze into his eyes once more.
Sam and I went to see Taylor Swift’s last concert and we had a great time singing along together. I totally underestimated the grid lock around the stadium and the fact that we would need to walk so bloody far from the bus to our seats. Finally, after what felt like hours of walking, we made it to the stadium and fell upon it like manna from heaven. A very short time later we realised our seats were at the exact opposite end of the stadium, up several flights of stairs, and that we were in fact nowhere close to sitting down and catching our collective breath. At that moment I all but fell to my knees and prayed to transform myself into a big burly guy who Sam loved to pieces so she would be happy for me to carry her to her seat. In my pre-K+ days, being a person of small-ish stature, and since Sam would never in a million years have allowed me to assist her, we instead continued our journey with some effort and little haste. Upon exiting the concert, grid lock resumed with vengeance and we had to walk up Everest to get a taxi. At the summit, taxis were few and far between so we sat awhile on an uncomfortable bench and very much enjoyed the feeling of slowly increasing blood oxygen saturation and decreasing heart rates. There ain’t no feeling like it. Truth be told, the entire experience proved quite a challenge to Sam’s lungs but she ultimately prevailed and we had a memory making kind of night. We had very exciting plans to give her shiny new lungs a test drive at Taylor’s next concert. Sadly, I will need to find a new companion to torture with Taylor’s music. Applications are already open as it will take me a year or so to find a volunteer willing to sacrifice their eardrums and sanity. PS: I do have a very strong preference for applications from big burly guys.
I could never ever forget the time Sam went holidaying without any Creon. This is akin to going on a road tip in a car without an engine. How she completely forgot to pack this essential medication no one will ever know. Dave and I received a frantic SOS to express post a bottle interstate so she could actually digest food or drink whilst away for ten days.
Sam loved a good count down. She would count down to finishing Uni, a birthday party, a trip. She would even count down to my trips. If ever I was wondering how many weeks, days, hours and minutes until something momentous occurred in my life… Sam would probably be able to fill me in. Counting down to transplant wasn’t an option as it’s not a scheduled surgery. Not to be deterred, Sam started a count up from the very moment she received the confirmation of activation on the list. Every now and again she would send me a screenshot of the current count. Sam was quirky that way.
Well, I could go on for quite some time longer but I suspect you’ve drunk a whole cup of tea by now, are licking the biscuit crumbs off your plate, and are ready to move on with your day. The last few things I can tell you about my friend are these: when it comes to CF, she was given a different path to walk than me and she made different choices to what I would have. Her choices were absolutely perfect for her and she didn’t regret them. How many people can say that? Not enough, is my guess. She took that last holiday the doctors advised against. She worked her dream job that I secretly didn’t think she could physically handle. She proved the doctors and me wrong. She well and truly earned her place within her work family. She bought a unit, she looked to the future, and believed she had one. She experienced and achieved all she could with the time allotted to her. She left nothing on the bench. She loved and she was loved. She stayed true to herself and made many people extremely happy. She is missed. Sam didn’t want to be forgotten. I tell you truthfully, I could never forget her, not even if I tried.