(This very painful poem by Linda is from my new book;"More Notes For Carers" which is out soon.)
How many days, weeks, months, years, has the sun, shining outside my window called to me to come out and play,
Yet I have been unable to comply?
How many times has the world passed me by, the simplest of things being impossible to achieve?
How many years have I lain in bed unable to move, speak or get even the simplest most basic need met?
How long have I sat in impossibly twisted painful postures paralysed stiffly, feet glued to the floor too heavy to move?
How many, many thoughts have been lost, barred access to, how many words misspoken or phrases cut short or twisted into unrecognisable form,
Too many to count, too many to tell, too many to remember?
How much pain can one body take, burning, throbbing, itching, screaming, continuously, With no let up, no respite, no remission, no effective treatment?
How much harm has been done to me by ordinary things like insignificant noises, sudden movements, a waft of strong perfume or wrong interventions and unaware people, leaving me lost and broken yet again, with no way out except to strive for inner peace, patience and to wait, of necessity, for it to pass?
How much waiting has been endured, waiting for healing, waiting for an easing of symptoms, waiting for recognition, waiting for the right help, waiting for the right knowledge, waiting for the right way forward, that never comes?