Better to have lived and lost, than never to have lived at all?

I was very moved by a documentary that I watched this week on BBC which  followed adults who had suffered from brain injuries, due to falls and car crashes primarily. Both the sufferers and their carers were interviewed by Louis Theroux to see how their lives, and personalities had changed since their brain injuries. I was particularly moved by a mother who had just moved back in with her husband and two sons : she was desperate to get her family life back but she was left with a short temper and her young sons were upset and confused by her constantly shouting at them so they kept out of her way. Her husband of 22 years was sad that he had become her carer. The entire family had a difficult journey ahead of them as everyone adjusted to what the lady had become, and she just felt as though she was a burden that was in the way.

He also interviewed two mothers who had ‘lost’ their children through brain injuries : a son who had been involved in a fatal car crash and a  diabetic daughter who had overdosed on insulin. Both adults were living in supported accommodation and their mothers grieved for the happy, creative children that they had lost to a brain injury.

It reminded me of the family pain involved in dementia. The main difference being that with dementia, we lost Dad gradually , whereas  these families had a dramatic incident, almost lost their loved one completely, and they have then made a slow recovery which has left them transformed and unable to leave an independent life. Whereas at least with dementia, there is time to adjust as your loved one fades away.

Joshua suffered his brain injury at, or just before, birth so he has never known a normal brain. We were told when he was 4 days old that his left hemisphere was 70% damaged and his right was 30% damaged and so they described that as ‘devastating brain damage’. So we have had the opposite experience to these families who had a ‘normal’ child that they lost, we brought our baby home with that diagnosis hanging over him and we have been able to celebrate every milestone that he has achieved, despite the odds. We were warned that he may never walk, talk, see or hear and yet he achieves all four, to some extent.

So which is crueler then, to have enjoyed a normal healthy life that has been snatched away by a brain injury or dementia, or to have been born with brain damage and then fight to retrieve whatever capacity is there? It is not much of a choice either way…