Simon Bostic – Living Life Fully

“I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life”

From Walden by Henry David Thoreau

In 1973 I was the first person in the world to survive a bone marrow transplant from an unrelated donor. It made medical history as a leap forward in the development of bone marrow transplantation (now usually called “stem cell transplantation” – a cure for blood cancers of many varieties as well as a number of genetic diseases).  My transplant saved my life but did not provide a lifelong cure and I have continued to live with a severe genetic immune disease. Since birth my life has been given finite time limits, with constant medical interventions and many months at a time in hospital. Through all this my family were hit by one traumatic tragedy after another.

At age 47, I am an old man indeed for someone with this disease. I have recently been advised by medics to “manage my expectations” given the scars and wounds inflicted by it on my body over time. This blog is my way of working through the physical and emotional trauma that I experience day-to-day living with chronic and debilitating illness.

I hope that it will also provide inspiration for anyone who lives with (or has recently been diagnosed with) chronic or life-limiting illness or disease, and especially for anyone considering a stem cell transplant (and their friends and families), those living with COPD and those coping with ileostomies.

It is also for anyone struggling to cope with the effects of childhood bereavement or other severe emotional trauma experienced in childhood. It is my story of surviving against the odds in the face of extreme physical and emotional challenges, living life fully against all expectations.

It is also about my continued insistence on pursuing my favourite pastime, travel, and how to cope with it as a disabled person.

It is about hope and faith, my past, present and future.

And finally it is my way of honouring and appreciating all the people who have done so much to give me life and the means to enjoy it.