Sometimes I believe that my body hasn’t changed much, the symptoms are slow and insidious I think I have months and months of life left to live.
Sometimes I believe my symptoms are progressing quickly as I look back over the weeks and realise I have lost so much. MND is so variable and you haven’t got a time space to identify.
Sometimes I believe I have a double edged sword to try to plan for increasing symptoms and the consequences of impending dependence on friends and family but I also try and live in the day as independently and make the most of every hour…. a hard task.
I was anticipating I would die before my hands lose dexterity but sadly my hands are now withered, my legs are failing to bear my body and my neck is failing to bear my head.
I was anticipating I would get everything in order before my time runs out, so I am reminiscing as I sort my photographs of people and places that have touched me, my family growing up, celebrations I have experienced, and those I miss dearly who have died before me.
I was anticipating I would have time to clear out my possessions, keepsakes and momentos. I imagine my family and friends in the future are sifting through my possessions as I did for my parents and my beloved Tim. So I slip into their shoes and I become brutal about them as they don’t mean anything to others so I must let them go.
I am in a place whereby I can still sort out my affairs, planning my funeral, fixing the house, throwing things out. It is important to me that I don’t leave a mess. I recall my dad did this when he knew he was going to die he sorted everyone out and make arrangement to see his loved ones before he died.
I am in a place where I am content and not sad in this frame of mind it’s like clearing my desk before summer holidays. When I have done this I can relax and I can walk down my road to my last journey free of baggage , like the Gormley statues on Crosby beach empty hands towards the sunset.
I am in place where I can let things to go so if you are close to me and you receive a parcel or an envelope it’s a gift of respect, fondness and affection or maybe something I borrowed and haven’t given you back !!!!
Living with MND 