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My Face ... My Strategy

Its not enough for me to let you know I have Chronic Fatigue Syndrome and I dont feel good.

I want to give you details, about an astonishing variety of stultifying symptoms that are real life-stoppers. And I want you to be haunted by a chronic with a face. If its me, well and good. If its someone else thats fine too.

But somehow people have to be touched by this devastator and destroyer. We are a huge part of the population, and yet nobody hears about us.

We have chronic blogging communities which is a good thing, because we need the contact. And within our small communities we share information with each other, friendship with each other a world with each other.

But the outside world, the one you live in, never even hears of this condition. Like its not real. Unless you happen to know someone who has it but its a mystery. Nobody understands it.

This is true. Nobody does understand it. We only know bit and pieces of things, that we try to make hang together as we grapple with it. We are doing a better job, getting more data than ever before.

But our media largely ignores us. Our medical community, researchers, funders, largely ignore us. Our communities largely ignore us.

So I am putting a face to this crippling disease. I am giving you an insiders view of what its like to be bound and gagged year in and year out by illness.

Other chronic writers are doing the same thing. None of us will touch every one. But if enough of us do it, telling our stories, sharing our tragedies and our losses, some of its going to raise awareness with real people. The people who read articles like this, who care about their own health and other peoples health and well-being.

And maybe eventually there will be enough people who have become aware of how our lives have been crushed and consumed, that they might make a difference with the institutions who dont seem to care about us . and so easily pass us by

Comments

Oh yes! Jody! Once gain...you've got it right! You've expressed what I feel perfectly.

I never cared much about writing (talking my head off was MY forte!) - UNTIL I came to intimately know this "BEAST" I live with.

Now I want the WORLD to know the Beast! ...I want to shake folks up...I want to rattle their cages...I want to make them squirm a bit...thinking about what a life like mine is LIKE.

I want the whole world to grasp that MY LOST LIFE...(and yours, and the rest of us) - no matter how big or small - is a tragedy that didn't have to happen, and doesn't deserve to continue on conveniently - unnoticed, untreated and ignored.

And I want to do it with the cold hard facts (of which we have plenty now!)

I want to use myself up in hollering from the rooftops - until someone with a louder (and perhaps healthier) voice takes up where I leave off.

I'm no martyr (to languish alone and quiet) - waiting for the "end" to come. I want to be wide awake, mad as hell...and yelling my head off!

(I know WHY "the Caged Bird Sings")

jackie (just get me on that rooftop!)
 
Girl,

I'm with you. The more of us there are making noise, talking about it, bringing the attention to it, ... I'm picturing grabbing the camera of the camera man,and drawing it back to the Face of CFS. and as he tries to turn away from it, grabbing it and pointing it back again and again to the Face. Persistently getting in front of them. Insistently showing them what they don't want to see. Doggedly telling them the things they don't begin to understand.

Until they do.

Jackie, my Baby. Have you ever done any blogging? You'd be good at it.
 
Jody, my sister! Persistant - dogged - stubborn - relentless...honest.....our watchwords!

There are certain beloved (to me) poems and poets that have stuck by me throughout this "journey"...Maya Angelou, of course, Dylan Thomas - lots more. They give me a voice when I despair of ever finding mine!
(Dont have the energy to write this all out...but two of my favorite stanzas get me where I live - now.)

I sometimes "joke" that I'm Doing Time in the Big House (a life sentence, apparently) for a crime I didn't commit!

"BUT A BIRD THAT STALKS
DOWN HIS NARROW CAGE
CAN SELDOM SEE THROUGH
HIS BARS OF RAGE.
HIS WINGS ARE CLIPPED AND
HIS FEET ARE TIED.
SO - HE OPENS HIS THROAT TO................SING".

"BUT THE CAGED BIRD SINGS
WITH A FEARFUL TRILL
OF THINGS UNKNOWN
BUT LONGED FOR - STILL.
AND HIS TUNE IS HEARD
ON A DISTANT HILL
FOR THE CAGED BIRD SINGS.....OF FREEDOM." Maya Angelou

Apropo, don't you agree!

(thanks!...never blogged - but look out if I do!)
 
Jackie,
If you ever decide to give blogging a whirl, you would be great. :)
 
i've actually thought at some of my really bad times of standing in front of the White House with a sign for recognition of M.E. and then lighting myself on fire! Just might be the only way to get the worlds attention!
 
I recognise that dark thought, jimbob. It is one from the worst of times. But in reality, I talk to people on the bus - only way I have to get to the shops, I can't walk that far these days. In the bus stops, in the shops, at the doctors.... With the family, although one's instinct is to keep it light, we have to tell it like it is.

Sometimes I have to lie down on the floor when I'm out. That gets attention! And helps me to regain enough balance to get home.

Time to stop being shy!
 
jimbob,

I know the feeling. But I strongly advise against this.:D

Let's try it this way for awhile instead. We'll get our words out there, in as many ways and as many places as we can. We'll stand (or lay down:Retro tongue:) together, in solidarity, and expect to be seen and heard.
 
jace,

I agree. We need to speak up and we need to be heard. We need to shoot straight and not be shy. We need to tell it the way it really is.

For years I didn't do that. I was embarrassed. I was ashamed. I realized later that deep down, I blamed myself for not being able to cut it; for being inadequate; for not taking proper care of my family ... But in the last couple of years I have come to realize that that is a crock.

And now, ... I will tell anyone anything. I will talk and talk and talk about this illness and the effects it's had on me, my family, and on other chronics and their families, their livelihood, their peace of mind....

We are not invisible. And we speak the truth.
 
don't worry, the fire thing is a last case scenerio if I was told xmrv caused me to get cancer and I only had a couple of weeks left, then at least I could put my body to some "good" use!
 
I can so relate (as usual) to what you wrote here. If I didn't get so worn out trying to write anything more than a response to what others have written, I would probably try having a blog, too. As it is, I have written testimony for the CFSAC and have also written my CFS story, and have links to those on my FB page (have shared them with a bunch of people in other ways, too).....and I am connected to enough different grps on FB there is always something on my page about the latest research, issues that we face, etc., as well as other CFS links.

When other ways of sharing come to my attention, I always try to spread awareness, too. However, one of the things that I do consistently that invites comments and questions (when I am well enough to go out in public) is to wear a t-shirt about CFS, Invisible Illnesses, or MCS. Over the yrs I have acquired quite a collection. (When my old shirts wear out, I seem to only replace them with awareness-related shirts!) I also have a tattoo that says, "Chronically Blessed".

I like using the shirts and the tat because I don't have to figure out a way to get the conversation going. People who want to know more figure that if I am wearing such a shirt, I must be open to talking about it....and they ask. Plus, the shirts show a sense of humor (or in the case of the tat, my faith), and those things seem to get people to know that I am not just going to be a total downer about the subject. That seems to break down some barriers and I have had some really good conversations as a result.
 
I also have a couple of related bumper stickers, participated in the PR video, and helped make a handout on CFS.

Sometimes I feel a little shy about sharing, but usually I figure that if I can do anything to help spread awareness it's worth it....and if people want to be nasty about what they hear/see, then they aren't worth wasting my energy worrying about anyway.
 
I love all of this. Especially the poem and wanting to set one's self on fire. YUP! Thank you.
 

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