My name is Rebecca whitworth (married name Stockwell) and I am 35 and a wife and a mother that can't be a wife or a mother. I am bed ridden have been predominantly or entirely bed ridden for over a decade.
I live my life in the dark and as close to silence as I can get. I do not live alone because unlike many other people with this disease I am lucky enough to have the support of my immediate family.
Still the loneliness I feel is beyond description. ME isolates us. The people I live with may as well be in another country. I can't bare their company, the sound, the smells, the movement of other people and my need for darkness means I am alone. Often My husband sits at his computer silently working or gaming and that is the best we have. We talk right here on Facebook.
I can not be touched, I am incontinent and I am loosing my memory. I feel as if I'm 95 not 35. The pain is horrific and even breathing and swallowing are not things I can take for granted. Constant full body cramps and spasms mean I have to have someone close by 24/7 because then they affect my diaphragm I can not breath until my husband gives the muscles rough massage. If they affect my throat then I can choke on my own saliva. My life is humiliating, hard, desperate, agony, lonely, solitary, terrifying , at times hopeless and unbearable and full of guilt, guilt over everything I can not do and be for those I love, for the burden I feel I am, for the lives I feel I have ruined because my care is care so demanding and my husband gave up a business, his social life, the ability to have children of his own (he loves my son like his own child and would never say any of this. It's how I feel)
I am so very lucky. My suffering, my loneliness is dwarfed by the suffering and loneliness felt by the most severely affected in my illness community.
I write for them, I write for myself too. What I write is not pretty or inspiring or heart warming. It is an expression of rage, pain, desperation, profound loneliness and the broken heart that comes with having this disease in a society that dose not seem to care. Families, friends, partners abandon us, don't believe us, put us into care homes that abuse and neglect us.
We are dying and screaming into a void. Some of us have no voice, at least not one that can be heard. I try to be a voice that demands to be heard.
There are so many beautiful people involved in this event and so many to sick to be involved. There is a wealth of talent and passion and inspiration here. I am so incredibly proud to be part of this wonderful event.