I can only assume that those who know me well enough would agree that my sense of humour is saturated in irony. Sometimes to such an extent that I can forget if I was joking or not. It is fitting then (or not depending if you want to indulge in post-modern meta-irony in which case you’re an ass) that April Fools’ day which attempts to be the most joyous and playful day of the year marks the most sombre day in my calendar. On this day April 1st 2014 my life was rocked by personal tragedy when my sister passed away.
My sister was born with Cystic Fibrosis (CF) which is a genetic condition that mostly affects the lungs. There are estimates of up to 100,000 diagnosed CF patients worldwide. The true number may be higher with many people being misdiagnosed. There are a majority of countries with CF patients that have no registries and thousands of CF patients are treated for symptoms without ever being diagnosed. CF is Ireland’s most common genetic condition, with 1 in 19 people being carriers of the defective gene, the highest rate in the world. The CF defect is a recessive gene meaning it takes two defective genes to be diagnosed with CF. Many people don’t even know that they carry the gene as a carrier suffers none of the symptoms, often parents give birth to a child with CF without ever realising it was a possibility.
There is a bright and shining silver lining to this dark cloud tale. When my sister was ill in hospital her friends got together and started the #SongforTri twitter campaign to get Ed Sheeran to sing for her, something she always dreamed of. The campaign was one of the top trends in Ireland and made her dream come true. Possibly even more amazing is that it raised awareness of CF in Ireland and around the world, which was something Triona campaigned very hard for herself when she became aware of how disastrously underfunded and poorly resourced this countries services were. Healthcare services in this country are still woefully inadequate but the legacy Triona has left behind her continues to this day.
Last year Cystic Fibrosis Ireland set up a memorial cycle for Triona for all the hard work she put in to raising awareness of CF and for her enduring presence within the CF community. The challenge saw volunteers cycle the length of the country, over 500 kilometres, from Malin Head in Donegal to Mizen Head in Cork, the most northerly and southerly points in the country. This year the cycle will be going ahead again, this time not just in memory of Triona but for the hopes of everybody living with CF in Ireland so that we can raise much needed funds for the charity. This year I am excited to take part in the challenge so that Triona’s efforts can continue. On May 12th to the 15th I will be joining volunteers from branches across the country in the cycle challenge. Over the four days we will cycle an average of almost 150 kilometres a day, which when I realised was a real wake up call.
The events that transpired on that day now two years ago stand out in my memory as something of a contradiction. For about two weeks that lasted a lifetime we lived in the Intensive Care waiting room with sporadic visits to her bedside, her face hidden beneath a breathing mask and a plethora of medical equipment disguising her. Objectively speaking it constitutes the saddest day I have experienced, a contradiction of objectivity, and yet equally it made one of the most beautiful memories I can recall. Ed Sheeran had just finished singing to her and the sun broke the clouds apart as light flooded what had been for the previous two weeks a dark and gloomy room and we all of us gathered there around her noticed an unmistakable smile as she was released from the mask.
At the time, upset though I was, given the surreal nature of what had happened I couldn’t help but feel like it was all one big joke. There we were the biggest April Fools’ of them all, to the most resounding prank ever played. I tell myself she might have enjoyed the irony of the situation, and certainly I couldn’t fault her on commitment to the gag. I tease and make fun because it was very much in the spirit of the relationship that we had and continue to have with one another as she never left me, not really, I still hear her criticise my fashion sense, lack of hairstyle and general outward appearance and personality. I am looking forward to her snide criticism rambling through my head when I undertake the Malin to Mizen cycle for CF.
I have set up a donations page here and of course any donations would be very much appreciated.
If you can spare 5 minutes more there is a video that Triona recorded herself before she passed away describing her battle with CF and the merits of registering for organ donation. For context I think it’s important to point out that after having watched the video I realised she broke into my room when I was at work to record it.