– By Tina Clarke
Most people with CF who have received a double lung transplant know the date nearly as well as they know their birthday and they celebrate it with cake, balloons or gathering with loved ones. My strange truth is that I don’t even remember the date of my transplant and barely the year and therefore I don’t celebrate on the particular day that I had my life saved (for at least a number of extra years).
Before transplant I felt very scared and vulnerable and I was deeply struggling with every movement and activity, and just breathing was exhausting. There was also a lot of learning and acceptance that came into that end stage lung disease process as well as lots of other emotions and feelings. As I was trying to come to some sort of terms with my upcoming destiny I remember my mum saying to me,
“This is just a phase of CF, not the end, and you always knew it would come one day”.
This sentence as simple as it was, shifted things in my perception away from feeling like I was at the dying stage, to containing it into “a phase” of this illness that I had to get through, just like I had got through all the other challenges with CF.
I didn’t update my will and testament or say my goodbyes to anyone and somewhere inside I just knew I would get through it. I wasn’t deluded or trying to convince myself, I just knew. I was a single parent and my son was just 5 years old so I had to survive; I wasn’t going to leave him alone.
Transplant as a pivotal point
Transplant was all the things you expect it to be and things that you don’t expect; a painful long journey and an amazing miracle and gift. So why do I not remember the date it was performed or celebrate one special day? When I saw others celebrating on social media I started judging myself and feeling guilty; was I not grateful enough? Did I take it for granted?
Transplant is a pivotal point in life with CF. Its one of those things you know is probably in your future, especially in pre-modulator times, yet you dread it ever looming on your health horizon – it means your CF has taken you into life or death territory. After transplant your lungs don’t feel immediately incredible, it’s something that takes a few months at a minimum so you have to work hard at recovery, just like you always have with CF. At some point you find yourself breathing normally again (a new normal) but you still have CF and you no longer have your lung symptoms but you have other issues and considerations. The face of CF changes for you, and you can feel as though you are in this limbo place somewhere between CF and semi-cured, but with a “new illness” that is much more subtle and has a shifting mercurial quality that you can’t pinpoint or predict in any way.
The months leading up to transplant and the months after transplant are fuzzy flashes of images and moments so is that why I don’t remember the date of the operation? Or maybe it’s that my focus was so intent on getting through it and recovering that the operation itself was not my responsibility – I was under anaesthetic and in the hands of surgeons, whatever was happening possibly only my subconscious new about it.
I think that the reason I don’t remember it or celebrate it is because like my mothers unforgettable words, it was just a phase of CF that has brought me to today. These beautiful healthy lungs were so kindly donated by a person and their family, but now they are mine – why would I try to remember when they weren’t mine? If the mind is as powerful as I believe it to be, I don’t want it to remember that these lungs aren’t really mine, that they are just on loan. I want my body and mind to be clear and resolute that these may be my second set, but they most definitely belong to me, so that there is less space for rejection.
I am grateful for these lungs every day; every time I walk the dog, I play and laugh with my son or make love to my partner- I guess I don’t need one special day to celebrate. And as for keep coming back to that particular phase of my CF life and replaying it, I have never been one to look backwards so I think I will just keep moving forwards in this new phase and see where and how far it can take me.
About Tina Clarke…
Tina is 43 years old, was born with the genetic disease cystic fibrosis and received a double lung transplant in 2014. Tina has worked in her passion of bodymind health and wellness for over 20 years helping hundreds of people with various conditions. She specialises now in Somatic Movement and Embodiment for trauma, anxiety and stress due to living with chronic illness, cancer or organ transplant. Tina facilitates online group courses, working with registered charities and other organisations and does one-on-one coaching for empowering individuals to understand how their bodymind is affected by their health and medical experiences, and how they can improve their resilience, emotional balance, anxiety and traumatic stress symptoms through a body based approach, whilst incrementally improving their relationship with their body, whatever their physical condition.
Tina has studied and qualified in Natural Nutrition, Regression Therapy, Yoga, Body Mind Centering, and is in continuing studies for Body Mind Psychotherapy, Embodiment and Somatic Trauma Therapy.