Written in 2007 for Lost Voices, a book edited by Natalie Boulton and published by Invest In ME. Although no longer in print, a review of the book can be read here
I recently celebrated my 30th birthday. This milestone held particular significance for me, as every single day of my teenage years and twenties was lived under the shadow of severe ME. There are many days in seventeen years.
The worst days, many hundreds of them, saw me so ill that I was unable to move my arms and legs, open my eyes or speak. For those hundreds of days, I could do nothing but lie motionless in bed, our house dark and shrouded in silence in order to spare me the agony of light and noise. I felt so terribly ill that even having somebody gently clean my teeth for me was more than I could bear. Some days my family struggled to tell whether I was conscious or not; it did not seem possible for me to be such a terrible ashen grey and still be alive. Even our GP did not think that I would survive.
Some days my family struggled to tell whether I was conscious or not; it did not seem possible for me to be such a terrible ashen grey and still be alive
The best days, in more recent years, have seen me able to enjoy short outings in my wheelchair; to sit in the garden and feel the sun and fresh air; to chat to a friend. Such simple things are so very precious.
Every day of the past seventeen years has been a struggle against the symptoms of ME. Every day has been lived within restrictions that even the frail elderly would find suffocating: total dependence on the care of others; leaving the house rarely, and never without considerable planning and preparation; seeing few people beyond close family. In the prime of my life, when my world should have been expanding towards distant horizons, it has instead shrunk to four walls of isolation. Spontaneity, freedom and independence are words that have been entirely absent from my vocabulary, during the years when I should have spoken them daily.
I cannot count the days when I have been torn apart with grief at seeing life pass me by, but they must number thousands.
Perhaps the greatest challenge in growing up with such a devastating illness is discovering any sense of self. That struggle is magnified when the illness is poorly understood and even disbelieved. At times the attitudes of others have come closer to destroying me than even my physical limitations. I have known the loyalty of wonderful friends, and the support of excellent medical professionals. But it is sadly true that I have nearly been destroyed by the apparent indifference of some of the former, and the open hostility and neglect of some of the latter. Despite having had to learn to sit and walk again, I have known a far more painful battle: that of forming any sense of worth through the pain of a cruel illness and even crueller attitudes. Even now, I know that in sharing my illness with others I risk them thinking that it is my fault, even my choice, or that a little extra effort would make all the difference.
Despite having had to learn to sit and walk again, I have known a far more painful battle: that of forming any sense of worth through the pain of a cruel illness and even crueller attitudes
I want to raise awareness of the terrible reality of ME, but I do not wish to give the impression that I exist in a state of misery. Like many others in my situation, I have discovered that when life is stripped bare, one learns to find joy in simplicity. My heart is marked by the many years of my life that have passed me by, taking with them opportunities that will never come my way again: it is a trail of scars too long to bear or even comprehend. But I am getting better and I live in hope for a future which may, one day, be mine.
Having grown up with ME I am determined that I will not grow old with it, whilst knowing that determination alone is not enough. My growing up may have been devoid of the usual experiences and rites of passage, but I have not remained a child. I have learned to make the very most of what I have; to live every day for what it is; and to look forward with hope, while acknowledging the past. Maybe that is what growing up is all about.