MISSING STEPS by Diane Levy-Hellig
“I became ill with ME/CFS in 1983.
Missing now for over 30 years.
Missing from my arts and education career which I loved.
Missing from being able to make a difference in the creative lives of many children.
Physically present in the life of my family but so often missing from being fully engaged as a wife and mother.
Missing the ability to function normally, think clearly, move freely, eat normally, be pain free, exercise, engage, create.
To live with energy.
Missing the support of so many in society and in the medical profession who do not acknowledge the existence of this illness and the devastation it causes in the lives of millions worldwide.
ME/CFS is a multi-system illness which literally stopped me in my tracks.
My first baby shoes remind me of the invincible feeling we have when we are young in imagining our futures.
They held the potential of a blank slate, of all things possible.
But they also now remind me of what I have lost, of what has gone missing in the spaces between childhood hopes and dreams crushed as I entered adulthood.
They are a reminder too that ME/CFS also affects so many young children and teens who miss out, sometimes for years, on such formative times of their lives.
We do not wish to be ill.
We want to be spontaneous with our family and friends and climb mountains with our children and stay up late and not worry about the cold.
We also know we cannot give up trying.
Even though we are missing from so many aspects of our lives we will continue to find our voices and make ourselves visible.
We will continue to fight for our rights for social and medical recognition, so that we can be afforded the best chances of being healed and live the lives we intended to live.”