May 12, 2020: It’s Our International ME/CFS and FM Awareness Day
by Jody Smith
On May 12, our International ME/CFS and FM Awareness Day, I tend to look back over the years since I was first flattened by ME/CFS. Things changed for the better for me when I found my community. I’d already lived with ME/CFS for 17 years by then. It was a lonely and frightening time. And then I stumbled upon Phoenix Rising with its articles and its forums.
No longer alone. I can’t describe what that meant to me. That is something I, and all the members of Phoenix Rising, want for everyone who deals with ME/CFS as a sick person and/or caregiver. We really want everyone to recuperate fully and forever. But in the meantime, we take full aim at nobody being alone in their illness.
May 12th has been our day since 1992 when Thomas Hennessy chose Florence Nightingale’s birthday for us. She had lived with a chronic illness which may have been ME/CFS for the last 50 years of her life.
Over the past 28 years since Tom Hennessy kicked things off, we’ve gone from having just a few articles and posts on the Net for the occasion, to much bigger things. Gradually more individuals and organizations have dug in, contacting officials, hosting events, publishing articles and photos to increase awareness amongst the healthy world and to enourage and connect with the global ME/CFS community.
Networking, dreaming, planning and brainstorming is always interesting when done with a few ME/CFS brains. It’s challenging when you consider the fact that most of us are not able to get out and do great things — or even relatively minor things. Events and demonstrations and the like are no small accomplishments for people who are mainly home-bound and bedridden.
The most severely ill of us never see the light of day, do not have visitors, do not speak or type or partake in any but the most basic interactions. These are mostly with caregivers. And that’s if they are lucky enough to have caregivers — and often interactions are for only moments at a time, leading then to a powerful need to rest from the exhaustion this creates.
Despite these limitations our community has managed to make some noise and get some attention over the years. Not a lot but some. And each year has been bigger and more diversified in our efforts and accomplishments.
Shoes being mailed to be laid out at demonstrations, denoting the individuals who should be filling those shoes. Articles and photos being emailed to ME/CFS organizations who compile these into poignant mosaics and documents and social media pages. Speakers lift their voices, volunteers hand out pamphlets, officials are convinced to Light up the Night … for us …
But now there’s a new twist and that is COVID-19. Around much of the world, gatherings must be no more than five people. Even where this is not required by law, many people are hesitant to go out and mingle. Especially people with compromised immune systems who could face exceptional risk from exposure to COVID-19. Like people with ME/CFS.
We had been creeping up and encroaching on the actual physical world through creativity and some wonderful volunteers. But now it’s back to the Internet.
Mind you if anyone is good with online communications, it is us. It’s all we had for years. In fact we could teach the presently isolated healthy world a thing or two about how to have a life without actually being able to go anywhere. We’ve been social isolating and physical distancing long before the rest of the world had to follow suit. We know how to be together when we’re apart. But that is another story.
This story today is about uniting in spite of our solitude, for our common cause. Ours is a virtual reality. We make use of the technology available to us to bridge the gap between ourselves and what we need. And a good deal of what we need is each other. So tap the keyboard, the phone screen, take pictures for your friends and family who you can’t be with.
We belong to forums. We’re all over each others’ Facebook pages, we tweet, and absorb each others’ Instagram pictures. Learn how to use Skype and Zoom and what-all, if you’re well enough. Push back the dark and the silence in every way you can. And if you are not strong enough to do this, know that the rest of us are doing our best to make a difference for you.
Phoenix Rising forums were my home for a long time. I have been more fortunate than many with ME/CFS. I have a family who understands, a husband who takes care of me and our son who is also ill with ME/CFS. And my husband also understands that I have some strong social needs which went begging for years before I stumbled upon Phoenix Rising.
On Phoenix Rising we threw ourselves into forum posts, developed relationships, celebrated birthdays and told stupid jokes and laughed ourselves silly. We shared our illness experiences and anything that seemed to help with the hope that we might help alleviate someone else’s suffering. We read and shared links to articles that might shed some light or offer some hope.
We bonded. We became stronger together than we were all alone in our bedrooms and living rooms. And we grew. Our numbers of ill members grew. That’s not such a good thing. But we also grew in determination, exploding with our stories. We gained confidence and courage from each other. We expanded our horizons as a community with a diversity of goals, strengths and passions. And all that is a very good thing.
Where there had at one time only been a few faint voices speaking for us and among us, there are now far more than I can list (though I’ve tried to give a representative sample at the end of this article).
I lament and complain every year that we are not given mainstream platforms like we should have for May 12th. We’re still not getting a normal amount of attention for this devastating illness. And I’m still lamenting and complaining about this.
But I have to say that as I look at how our community is standing up for itself — when so many of us cannot stand for long, and some can’t stand at all — I am bursting with pride.
The most severely ill in our community can’t even talk, can’t draw sufficient breath to make a sound, don’t have the energy to be able to be heard. It is beyond them. But I tell you, the rest of us know how to speak up for our most vulnerable. We care deeply about the fragile and helpless even though the powers that be continue to show little interest in us. We will continue to paper the Internet about ME/CFS. We will continue to step up in every way we know how and are capable of.
Whether the rest of the world ever sees us or not, our lives matter. I hope you’ll check out the links, in alphabetical order below, for some of our community’s organizations and representatives. Learn about our illness, and the people who suffer from it.
Please add any other groups that you think should be included in the Comment section below.
The Bateman Horne Center of Excellence (BHC)
Light Up the Night Challenge
The Massachusetts ME/CFS & FM Association
The May12th International Awareness website
May12th International ME/CFS Awareness Day
ME/CFS Foundation SA
The ME|FM Society of BC
M.E. Support UK (MESUK)
M.E. Victoria Association
Millions Missing Canada
The NATIONAL ME/FM ACTION NETWORK
The Solve ME/CFS Initiative (SMCI)
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