I'm always inspired by so many stories of humour, resilience and courage in the face of illness. Not least today.
Harry Moseley, the amazing 11 year old Birmingham lad with an inoperable brain tumour who's been giving all his energy since diagnosis to his campaign Help Harry Help Others .
I first heard of him when I rejoined Twitter this summer. He sells wristbands to raise funds for Cancer Research UK. Harry has gained friends, celebrities, kids just like himself, adults who admire his fighting spirit and optimism - and that smile! - all over the place.
As I write, Harry's Mum and family are facing the agonising wait of the results and prognosis for Harry after an MRI scan yesterday. Harry has not opened his eyes since surgery two weeks ago today, but remains responsive to stimulus from his Mum, as she encourages him with the prayers and well-wishes of his Twitfam as he calls us all. What an inspiration through the darkest times!
Also today, my friend's lass Jenn is doing a sponsored skydive for the local Barnsley Multiple Sclerosis Society in South Yorkshire. She herself has courageously battled with MS for the past six years, remaining determined and resilient in finding ways of raising funds. We're right behind her (or underneath, today, considering the altitude involved in her dive!) as she is nearing her target of £1000 and stepping out of that plane!
Jenn's sponsor page for Barnsley M.S.
One of the most challenging parts of living with Myalgic Encephalomyelitis, for me, isn't coping with the multiple disabling symptoms. Not the pain. Not the exhaustion. Not the disrupted sleep. Not the discomfort. Not the brainfog that makes me sometimes act or sound not like myself but somebody losing their faculties! Not the inconvenience and bereavement of having to reframe my former chosen path to walk a new road. I can find all the gratitude and attitude for those things.
No, what's the challenge for me, is to face the everyday mockery and disbelief of those who think they know more than us about our illness.
To face the uncertainty of the research and the future of recovery when so much is expected and so very little delivered.
To face the well-meaning but frankly patronising comments from those I thought now understood more about me and M.E.
To face the withering, mystifying onslaught of misinformation on TV and on national and local radio, in the press, seemingly everywhere.
To face the chipping away at my whole personhood and place in society. To know some consider this hell a cushy "lifestyle choice." These days I even find myself wondering how people see me and what they actually think when they encounter the me they see from outside.
This is a challenge I'm so determined to meet. To spot the heroes and recognise the blustering bullies who try to usurp their place on the podium! Not with the anger and grief that well up at the injustice of being derided and scorned as well as being genuinely ill. But to get past that, to hang on to my humour and graciousness, laughter and compassion and courtesy in the face of it all.
To hang on for dear life to the bigger picture where the truth shines clear and I have a choice not to be dragged down into bitterness or wallow in self pity. I've managed so far through all these years of M.E., and I'm darned if a school of thought with its own vested interests, no matter how bullying and big it is and how loud its mouth and its clout, is going to bring me down now.
We have lots of real heroes in the field of M.E., too.
The scientific researchers who are evidently doing all that they can in the face of what is now showing itself up as staggering, spine chilling opposition and schoolyard bully spoiler tactics! Doctors and health professionals who do the real work of informing themselves, keeping up to date with research and trying to do the best they can for their patients. Other sufferers who keep us informed, encouraged and entertained when the picture would otherwise look blank or impossibly dark; bloggers, tweeters, Facebookers, IRL heroes who bring us hope.
These M.E.heroes are not hard to find (I have a list of some bloggers who inspire me, in the sidebar to the right, if my dodgy sense of direction hasn't deserted me!) if we look for them and don't get distracted by the headlines. Even though they may not be invested with the power of other dominant characters to get their voices heard! Talk is cheap.
I'm rooting for Harry, and Jenn, today, and all who are fighting so inspirationally, young as they are, for their illnesses to be better funded.
Meanwhile, as we find ourselves still in this tunnel of controversy, the fight is also to keep from self-destructive hate and loathing of ourselves and others, or becoming paralysed by despair and cynicism. We need urgently to hang onto hope, not in some projected future utopia, but right here and now in the scratchy bedsheets and blaring sensory overload of our lives with M.E.!
shouty opinions, get you down or stop you being who you still are deep down inside!
Let's fix our eyes on the heroes who inspire us. With dignity, honesty and compassion we can grasp the facts with hope and determination, so we can do our part as well as we possibly can. Then those bullies will gradually slip back into soft focus where they belong!
Invest in ME
M.E. Association
M.E. Research UK
Whittemore Peterson Institute for Neuro-Immune Disease
