Back to reality

Readers of my blog will know my mixed opinions on Stephen Hawking but I have to give him credit for coping with living like this for 40 years. I reckon me and him are at comparable states of disability and have to endure the same day to day challenges but whereas he has spent 40 years becoming one of the world's leading scientists, I am struggling to maintain an appetite for life after 5 years. I don't mind that his intellect dwarves mine but I feel inadequate that increasingly frequently I consider throwing in the towel. Life isn't much more difficult than a year ago but it's just slowly wearing me down. The hours and hours of sitting alone in one place, the entrapment of being paralysed from the neck down, the immense frustration of not being able to talk, the boredom of not being able to eat or drink anything, the indignity of carers doing my personal care, the monotony of the identical daily routine confined by the carers hours, the stress of frequently changing carers, being excluded from 95% of family activities, I could list so many more. Regarding the first item, I am not having a dig at anyone because I don't expect people to sit with me. I would feel awkward, especially because I often don't have the energy to maintain a conversation. I guess I sometimes just want people around me, even if they were complete strangers I could at least watch life go by. Maybe strangers are preferable as I wouldn't feel any guilt that I have insufficient energy to interact with them.


I know that I should get sufficient enjoyment and satisfaction from seeing the boys grow up, but it isn't enough sometimes. And those sometimes are getting more commonplace. I feel awful admitting this but it's more of a reflection of the depths that this existence takes me rather than the boys.

I think that things have worsened in the last 3 months or so, because I don't have the energy to use the computer during the day (evenings seem better), but without the computer, life is just a continuous cycle of trying to swallow without choking and struggling to lift my head off my chest. The fact that the MND progression has almost plateaued for nearly two years is of little consolation and there are days when I wish it would just get on with it. The last few months have certainly got me thinking about the merits or otherwise of ventilation.

Strangely, I can remember when I was in my late teens, learning of Stephen Hawking and thinking "how the hell can anyone cope with living like that? ", blissfully unaware that 20 years later I would find out. But actually I still don't know the answer.


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