Tuesday, October 01, 2013

Doing it for my brother and sisters. Amen!

So here I am once more restarting the blog, but this time, for the first time, making it public. After years of having seen many friends religiously write up fantastic blogs regarding CF, how it affects their daily lives and in many cases their road to transplant, I now feel like time has come to take up the baton and carry it forward myself.
So why resurrect my blog? For many it will be the first time you will have seen this blog, it has sat idly for years filling up the interweb minding its own business, sitting alongside the numerous porn sites and cat videos. However in the last couple of weeks I have lost a couple of friends with CF, one waiting for a transplant and another who had a transplant. Both Chloe and Sally are a sad reminder of what a sad disease Cystic Fibrosis is. Not only this, but during the last two weeks I also met the mum of one of my best friends Clare who also sadly died earlier this year. The latter of these three events, whilst sad, was also one of the most fulfilling experiences I've had with CF.
Clare and I were transplant husband and wife. We were both on the lung transplant list (the last option for someone with Cystic Fibrosis as they enter the end stage of life). We had only known each other a year or so, but our friendship grew, not because of some unfathomable bond created through the shared experience and recognised empathy that Cystic Fibrosis can create(a bond that I do feel regularly with other CF people) but because of our humour, our view on the world and Clare's 'poo babies'. With CF there are often bowel blockages (inability to poo), these lead to bloating and requires treatment, often as an inpatient and in some cases requires surgery. These were Clare's 'poo babies', an experience I to have had the unfortunate pleasure of having. The bond of shared experience is so valuable in the formation of any friendship in life, whether that be a shared sport, music or even a life experience (parents divorcing). However, a bond that forms what is essentially every part of your daily life and will ultimately lead to your untimely death (all deaths are untimely in my opinion ;-)) is strong. However, this one bond CF does not mean that you see eye to eye with every other CF person on the planet, only that you share an experience that is truly unique and shit. Clare and i not only had that unique CF bond that was formed and held together by sticky mucous and poo that had great viscosity, but we also had all the other ingredients that made a friendship and that made it truly unique.
So Clare's mum (we will call her Mummyshark, as that's what Clare occasionally referred to as). Clare had the distinct feeling she was in fact a shark, her own blog was to track her life journey and ultimate return to the sea. Clare wasn't mentally ill, I should state this early on. ;-) She was a quirky thing with a unique sense of humour) came to visit me in Glasgow. Not being well enough, nor confident enough to travel much these days (travel is exhausting and short journeys scupper me) it was ideal Mummyshark coming to Glasgow, as the opportunity to visit her down south was not going to come until after transplant and there is no telling when that would be. Clare's mum showed me photos and told me stories about Clare and it made me feel closer to Clare, it made me miss Clare. One thing that stood out for me was the impact Clare had on people, how she influenced them and also brought them into her life. It not only touched me to see and hear this, but also to see what that meant to Clare's mum. So, while there is much more to say about the life reaffirming experience of meeting Mummyshark and the events that happened that weekend (a half naked dwarf heckling and manipulating his testicles through internal means), what was clear was the difference we all make daily in our lives, the impact we can have and how that changes other people. It is evident the influence Clare had, not just Clare, but other friends I've known too and it is their influence that makes me want to carry this blog onwards. Not only is it their influence but i have an ego that needs stroked, and the possibility that words I write could influence people only comforts that ego , leaving me with a great deal of satisfaction, but also exacerbating the need for it to be stroked.
So it is for my friends, their fine blogs and lives that I now write my own blog on a regular basis (at least weekly updates). I want to show what CF is about, because far too often people see your face and say 'you look well'. Well it's not my face that needs the transplant, it's my lungs. So I will not only tell you my journey to transplant(and what a shit scary journey that will be), but also how CF has affected my life, mentioning the good, the bad and the Ann Widdecombe. All of this I hope will be laid on a warm bed of humour and sprinkled with jokes.
The wonderful Clare McCruickshark

1 comment:

Jac said...

look forward to your musings :-) xx