At 48 years old I am living with a condition which has all but taken my ability to walk and which has significantly reduced the strength in my arms and which has removed a lot of function from my fingers. During the past twelve months my ability to do things has changed completely. Each day I am a father to two young children and I am a husband. I have had to restructure our financial world, I have had the house remodelled, I move with a wheelchair, I no longer sleep in the same bed as my wife, i am washed and dressed by a carer five mornings a week (previously by my wife). I live with statistics saying I have 1-2 more years to live, unless I am an outlier.
Prior to losing strength I would go to the climbing wall with my daughter, I would (try and) play golf with my son. We shared fun times together and we bonded. I miss it so much and so do my children. I had started to cook at the weekends and had picked up my clarinet again. I used to love going for a walk in Chipperfield Woods.
When a family experiences a change like this, with no known cure and the prospect of further deterioration, the effect is totally devastating.
Extraordinary circumstances bring forward extraordinary people behaving in exceptional ways. Excuse the lack of humility here, but I am putting the four people in my house in this group. I could not be more proud. How on earth does it feel for each one of us?
There is no limit to how you can help our little family, which has quite simply been dealt a massive blow.
I am strong but I fall short. This is incredibly tough.
I am more passionate than ever about following my beliefs, such as Waldorf Education and challenging the conventional wisdom served up by so-called experts. I don’t care what anyone thinks of my beliefs.
As you know I believe God has a purpose for me in having this experience. That helps me, but my heart still breaks when I see our swingball and remember endless games. I cried thinking about it, and my friends today were great. I’ve only known them a month.
I am never going to stop thanking the people who help.
Every morning I hear my wife’s cheerful voice as she gets the children up and ready for school. It wasn’t an accident that I met this exceptional person all those years ago in Istanbul.
My wife was described as ‘lucky’ a couple of weeks ago. ‘She has a cleaner and people cook for her. What does she do all day?’
At 48. We do everything to hold it together. I have a family of four loving, talented, funny people in the middle of a tornado.
Today I met Tony, the man who cut my walking circuit on Kings Langley common. When I told him about my legs, we just looked at each other in silence.