These inconveniences annoy me sometimes but they also help me not to forget where I come from and measure the chance to be with my family today.
A message on my voicemail from my doctor put my life right off track.
It’s both amazing and so banal.
In January 2014, this message brought me into an unknown world, that of cancer.
Bone marrow transplantation is a technique that has only been practiced for a few decades. It is still full of uncertainties and its chances of success are relative. Before the announcement of the diagnosis of myelodysplasia, I had never even known of these pathologies and the bone marrow transplant… The words of the doctor at the announcement of the diagnosis were “you will have to fight”. So I developed strategies to tame fear, anxiety and the unknown: writing, communication with my relatives, but also the discovery of networks called “virtual” but so much helpful to people like me suffering from these diseases.
I walked on this thin line between hope (hope to have a compatible donor, hope to heal) and the preparation of a departure that could happen quickly (my life expectancy at the time of diagnosis was a few months and the only way out was the transplant). I decided to experience this unexpected event as a journey, a journey with uncertain outcome, among surprising landscapes, and populated by unusual characters: a barren universe, caregivers and cosmonaut visitors, a transformation into a chimera (the transplanted person with a different DNA is an organism that does not exist in the natural state and is medically termed “chimera”).
This state of mind helped me through the stages of transplant, hospitalization and the difficult aftermath of GvHD. I am today a very proud and immensely grateful chimera of this extraordinary journey, which opened me horizons on worlds that I did not imagine.
Three years after the transplant, the daily keeps marks of this trip: pain, joint and muscle stiffness whose physio sessions do not come to an end, a fatigue that arrives faster than before, a chronic ophthalmic GvHD … These inconveniences sometimes annoy me but also allow me to not forget where I come from and measure the chance to be with my family today.