Action for ME strategy launch - Speaker's House, 29th June 2016.
Hello, I’m Catherine, I volunteer as a policy research officer for Action for ME.
I feel very lucky to be here this evening. Lucky because I’m
out with you at such a glittering event, while someone else is putting my
children to bed.
But I’m lucky in a deeper sense. And this evening, instead
of talking to you through powerpoint charts and statistics, as I usually do, I’m going
to talk about my personal experience with ME, to explain why.
When I became ill with ME I was 18 and training full time to
be a professional dancer. The illness began with sudden and strange loss of
power, and pain, in certain muscles. The symptoms spread, my condition
deteriorated and within a year I was mostly confined to bed, too weak to do
anything other than very basic self-care.
I wailed and sobbed, in the way teenagers do, over the loss
of my dance career, a career I worked so hard for and that gave me such joy and
exhilaration. But within months my condition began to improve, slowly but
spontaneously. The joy of taking a few more steps each week, of going outside
into the fresh air again, of feeling some life come back into my muscles, it revived
my spirits and I embraced a new path for my life.
While I was recovering I got myself a couple of A levels at
a local college and 3 years after dropping out of the Ballet Rambert School I embarked
on a degree course at the London School of Economics. I was about 80%
recovered, I could cope with student life as long as I as I got 8 hours sleep
per night. No all-night parties for me. But I found a hunger for ideas and a
zest for life. I threw myself into student theatre production and clocked up
straight As in my exams and dreamed of far flung travels. My starry eyed gaze
was firmly set on my future once again.
But those two heady years of student life turned out to be
my last gasp of carefree youth.
In 1993 the crippling symptoms of ME reared their
ugly head again, but this time even more vicious than before. ME at its most
severe is a total shut down of energy pathways to the brain as well as the
body. I lost the ability to sit upright, I couldn’t lift a spoon to my mouth, I
sometimes couldn’t turn over in bed. I also lost the ability to process information
from TV or radio. I couldn’t read, speak more than a few whispered words, or write
my own name. It was like inhabiting a world between life and death.
I lost the life I had painstakingly rebuilt for myself. And
this time I never got it back. That acute phase of needing 24/7 care from my
parents eased, but this time my recovery, for what it was worth, was very slow,
punctuated by relapses, and very partial.
ME has left me disabled, needing some help with day to day
life, and needing benefits to support myself. But I am one of the lucky ones.
I am lucky to be here this evening. Because some people hit
with the full ferocity of this disease as I was, or worse, make no improvement
at all. They remain in that limbo existence for years, and even decades. The
idea of coming to an event like this feels further away than the moon for them.
I now have a life that I love, and have carved out a place
for myself in the world as a disabled person, and as a mother. But I find it
almost impossible to extend my positive outlook on disability to people with
the severest form of ME.
That's why I want to tell you about Emily Rose Collingridge, one of our
community’s best-loved heros. Emily’s mother remembers how, as a feisty and
passionate child, Emily’s health problems began at the age of six after
contracting mumps. Despite struggling to attend school all her childhood and
adolescence, her ME progressed and by the age of 15 its symptoms had her trapped
in her own home. But she didn’t stop fighting. She worked from home as PR and
fundraising manager for a newly formed charity for young people with ME and she
continued charity work from her bed in her twenties until her ME became so bad
that she had spent every day fighting for her life. During a small upturn in
her health Emily, spent all her energy writing a book to guide others through
the medically unknown territory of severe ME. Everything she did was, in her
words, “to make something positive come out of my experience”.
But Emily’s ME continued its aggressive path until she had
to be tube-fed and was doubly incontinent, heavily dependent on morphine and
with sensory intolerance so severe she couldn’t cope with the company of her
own family.
Emily tragically died at the age of 30. She belonged for a
time to my local support group, but sadly I never met her.
I work with Action for ME because the charity’s purpose is
to fight injustice, ignorance and neglect.
My own experience [see here], and that of my friends, has taught me a
shocking truth: that the more ill you are with ME, the greater the ignorance
and neglect you suffer.
There is no healthcare infrastructure for people like Emily.
Apart from fellow patients, and her dedicated GP and consultant, no recognition
of her terrible plight. This is because Emily was invisible to the world. Not
just because she couldn’t leave her bed. But because there is still a denial in
some sections of the medical profession that an illness, often given the
innocuous sounding name of Chronic Fatigue Syndrome, could make a person as ill
as she was.
It is far more comforting, as well as convenient, for all of
us to think, and even hope, that ME could be a psychosomatic illness. Because
then it could be turned around relatively simply. It need not steal young lives
like Emily’s in their prime; and it need not cause them unendurable suffering.
But that psychosomatic paradigm betrayed Emily and it no
longer stands up to scientific scrutiny.
I believe It’s time for a new strategy. One that offers hope
of alleviating the suffering of some of the most seriously ill people in our
society. And that fights for them to be treated with dignity and care.
I hope you’ll join me in whatever way you can, so that we
can make this wish a reality.
Catherine, bravo! It must have taken enormous courage and strength of will to stand there and deliver that heartfelt speech. While never having been as ill as you were, I've had that soul-destroying lack of energy and purpose for much of my life. Looking back, I recall finding school-days a terrible struggle, and used to come home and go to bed. But somehow we endeavour to have a 'normal life' for as long as possible. The only thing I would say is that I've come to the conclusion - certainly in my own case - that there are physical and physiological/emotional factors which play a part. The mind and body can never be completely separated, I feel. I am quite sure that unknown-as-yet viruses or something like them invade some ME sufferers' bodies and brains, but equally, I believe that one's constitution may already be compromised in some way before this happens. Anyway, at the age of 60, I have just filled in another Capability for Work Assessment Form and sent it off in the hope I won't, this time, be called to a face-to-face assessment or then, be refused, and once more take it to Tribunal, like I had to three years ago. I'm not sure this time that I shall survive it. Huge congratulations Catherine once again. Sincerely, Jacqui Wilmot
ReplyDeleteThank you also for remembering Emily in your speech. It is so important that those whose lives have already been taken by this cruel and poorly understood illness are not forgotten.
ReplyDeleteSometimes I feel guilty if I complain about being so ill when I don't have a terminal disease , buy in a way it's worse you feel as I'll as someone dying with cancer but you don't die you just continue struggling hour by hour with this hidiously misunderstood illness
ReplyDeleteThank you Catherine. Like Emily, my son who is the same age as she would have been, had the recurrent chronic health issues from early childhood, struggling though school and unable to attend for his last two years. Medical disbelief and "blame the mother syndrome" followed, then worse, well-meaning but ignorant GP and consultant, resulting in 16 years of isolation and grief for him and us, carer's. If that was not sufficient a burden, that is a fight for appropriate medical, social Care and well being support (all denied), a fight for educational entitlement then benefits.......Few other chronically sick people have this total overwhelming struggle.
ReplyDeleteSo what was to be done? Fight back, lobby, campaign and develop a career as a "professional irritant" I say! Now, 20 years on, the effort is at last starting to pay off.
On an additional note,I have found that the children's charity I once held in esteem and actively supported has lost it's way and it in danger of betraying the core values and approaches Emily espoused.
Such a wonderfully written post! Thank you for being such an eloquent advocate!
ReplyDelete