parents' experience
Fatherhood: adapting to disability
Nicholas Fincham, a parish priest from west London, UK, talks about the events in 2006 that led to his disability. He describes his family's experiences and how he has adapted to disability. Nicholas is married to Rosemary and they have two children, Hannah, aged 14 and Aidan, aged seven.
On 9 February 2006, I became unconscious while hospitalised with extremely high blood pressure. I then suffered several strokes and also developed hydrocephalus, which is an accumulation of cerebro-spinal fluid in the ventricles inside the brain.
I know nothing about the procedure that followed to insert a shunt, which has apparently saved my life. A shunt drains the excess cerebro-spinal fluid from the brain and into the abdomen where it is absorbed naturally. Shunts and hydrocephalus were words that had never before entered my vocabulary.
Early on that Saturday morning, the ward sister at Charing Cross Hospital telephoned my wife Rosemary, requesting her to come to the hospital immediately. Unexpectedly, I had gone into a coma and needed a CT scan (a special type of X-ray). The staff thought she should see me before I had the scan.
Rosemary came and was so shocked by my condition that she called my mother and sister from Sussex to come to see me. She thought this could be for the last time. She also contacted the hospital chaplain and our area bishop who left his family that morning to come and anoint me.
Talking with our children
It was my wife who held the family together during this unstable time, and the following months and couple of years that followed. She explained my condition to our children in ways they could relate to and estimated the best time to share certain events and procedures with them.
Children's memories
Recently, we asked our children what they remembered about this time and what had worried them. Hannah said she didn't want to talk about it and told Aidan not to discuss it either.
When I had been at my worst Hannah had been away at boarding school. With time, she said that she had not really bothered about being away as she hadn't thought that I would die. She visited me when I was transferred from the intensive care unit to the high dependency ward. I think she returned to school at that time knowing I was out of danger but not really knowing how much of my mobility and independence would return.
In February 2006, Aidan was four and seems to remember much more than Hannah. He enjoyed his dad having a reflux and swallowing test as he too was offered one of the coveted sponge cakes carried by the speech therapist. Using the hand cleanser at every possible opportunity is a habit he has retained. When visiting hospitals, he will still ensure that all those within earshot abide by the hospital rules of rinsing your hands on the way in and out of every ward.
Rosemary encouraged Aidan to read his book to a lady across the ward who had been a school teacher. She was always willing to chat to Aidan and hear about his day. Her visitors also seemed quite pleased at the diversion. These small things drew his attention away from my problems. They helped him see a wider picture of the ward rather than just dwelling on his dad being stuck in a bed, finding it difficult to speak and being able to walk only a short distance.
Non-verbal messages
In the very early days when I remained sedated and in intensive care, when nobody could foretell what the future held, my wife kept everyone's spirits up at home. One day she asked Aidan if he had a non-verbal message for me. &lquo;Yes,&rquo; said Aidan, &lquo;Wave to Daddy with one hand&rquo;. When she returned after visiting and told Aidan that Daddy sent him a little wave and a blink of his eyes, Aidan replied &lquo;Mummy, when you see Daddy tomorrow, see if he can wave with both hands and blink twice&rquo;. So although Aidan was not visiting me at that time he was inspiring me subconsciously to recover.
Knowing I was responding, Aidan then sent me one lift of the foot, then both feet. I don't remember any of this but apparently it was these signs in the early stages that gave my family hope and encouragement not to give up on me.
When I was off the ventilator and holding my own, I was moved to the high dependency unit. It is from this point that I can begin to remember something of my illness.
Support at home
After about five weeks, I was discharged home to the care of my wife. She was my voice in the early days — chasing appointments, discussing queries with different bodies, and helping me obtain the correct medication. I also received regular visits from a physiotherapist whose support I found invaluable.
I was unable to read a newspaper when I came home but I bought one every day nonetheless. The physiotherapist suggested that I start with the headlines and then move onto reading one small item a day. I was able to read music again quicker than I learned to read words, so I began to play the piano again. My family enjoyed this and it was something I was better at than any of them.
Soon I was walking around the block of our house. I was quickly beginning to walk to people's houses for a coffee.
My wife's godmother is a senior adviser for ASBAH, the Association for Spina Bifida and Hydrocephalus (for more information visit www.asbah.org). She guided us more than anyone else in this area of healthcare and provided local contacts. ASBAH also provides support for children in the form of a book about hydrocephalus. Our children were able to read about a bear who, like their dad, has hydrocephalus. The book was perfect for explaining the symptoms in a clear, straightforward way that our children could understand.
Coming to terms with my experience
I had six months off work although not away from the parish. We live opposite the church and as the main key holders we were often the first port of call.
Eighteen months after my initial health scare, I suffered from severe depression. This is now controlled by drugs and I'm beginning to feel much more motivated and in control of life.
When I was ill, the main concern for everybody was my physical ability to speak, walk and return to work. What was overlooked was time and support for me to come to terms with what happened.
I rely on others to tell me this information, as I have no recollection of those first weeks in February 2006. I'm now speaking with a doctor who is helping me to talk about my experience and identify areas that are still not as they were.
I am so grateful to be alive and every day now is a bonus and another day to thank God for.