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ME/CFS: Becoming Visible

Posted Mar 10 2011 1:00am

"New Logo and Badge for Invisible Awareness dot org" This Saturday Invisible Awareness dot org will be showcasing another, new story of what living with ME/CFS is like.  I’m excited to announce that Toni Bernhard has graciously offered to share her story for the Month of March!  :-)

To that end, I wanted my readers here to know that I spoke with Ayo who is the editor of Life Skills Magazine (LSM) , in which my monthly column, Dominique’s Corner, runs if he would allow my column to be cross-posted here on 4Walls and AView as some of my readers are unable to read it in the magazine format due to sensory overload.  Ayo graciously said yes.

So, I will be cross-posting my column here a day or two after it runs in the magazine so all of you will then be able to read it.

I held back posting my last column until today because February’s column is directly related to why I founded Invisible Awareness dot org and I wanted to run it right before the I posted the next story on Invisible Awareness dot org .

I hope that it helps you understand my motivation, my passion and my heart!

When Ayo first offered me my own column as a way to raise awareness about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I was very excited by the prospect.  To be honest, however, I didn’t really know where I was going and what having my own column would look like.

That has now changed.  For the coming year, I will be writing Dominique’s Column with a focus on ME/CFS specifically in an attempt to raise awareness and understanding of the devastating ramifications of this illness.

Moreover, it is my heart’s desire is to garner an army of healthy souls that will surround those who are enduring this illness alone, with the support, compassion and respect they so deserve.

Over the past year, since starting my own blog, 4Walls and AView, which chronicles what living with this illness looks like on any given day, as well as, reading dozens upon dozens of other ME/CFS blogs, I suddenly found myself grieving for the many people who were dealing with the devastating effects of this illness on their lives and their bodies, day after day, alone.

More often than not, I would stumble upon blogs that shared the incredible difficulty of trying to manage this illness in a medical environment of distrust, disregard, and dismissal.

In addition, post upon post revealed the constant process of grieving that repeatedly occurred as a result of lost friendships, divided families, physically induced isolation, wrecked marriages, enormous financial burdens and lost careers – just to mention a few.

There seemed to be no answer to the constant barrage that assaulted those struggling under the devastating weight of an illness that twenty-five years later still has very little research occurring, nor, any clue or direction as to what was the causal link is.

While very little was being done to find a causal link for an illness that is now estimated to effect 17 million people worldwide – 1 to 4 million in the United States alone – those suffering with ME/CFS languished within the four walls of their abodes, struggling with an inner strength often found in only the most heroic among us, to hang on just one more day, hoping against all hopes that a cure would soon be found.

I also read story after story of souls who found that they could no longer endure the ravaging effects of this atrocious illness and had found the only escape they felt was available to them:  suicide.

For those who did not find themselves at this point, there was an innate understanding of the constant struggle to hang on another day in the midst of excruciating, never-ending pain, of fatigue that was so heavy the body felt as if it had been encased in lead or a cast, of cognitive impairment that made it impossible to continue driving, working, or accomplishing the tasks that before becoming sick, had been done without a momentary thought, because they were done with the ease of a brain that fully functioned.

The communal understanding of wanting to escape the constant wear on an already weakened body caused many with ME/CFs – in the privacy of their own struggle, to contemplate, even if fleetingly, the prospect of ending their lives, thereby, ending their own constant and unpredictable suffering.

I, as a Christian, have even found myself pondering this escape.  There was a time, where I even contemplated how to go about it.

Many who stand outside this illness looking in, find themselves thinking that these people are depressed, thus, the contemplation of suicide only natural.

However, the reality of this situation is that depression is not the motivation for the contemplation of suicide.  It is the lack of hope, of possibilities, of dreams being crushed and buried, and the lack of respect and compassion by a medical arena that should be at their sides to lend a helping hand, but more often than not, is absent, abusive, and assaulting.

I found myself pondering, what if anything I might be able to do, to give a voice to those like me, who spend so much time alone, struggling to hang on until a cure is found.  Was there something I could do that was simple, not too energy laden, and yet, could reach a world that was unaware of the massive amount of suffering occurring right under their nose?

After months of pondering I came up with an idea that I thought would work.  I shared it with close friends whose wisdom I respected.  After many more months of preparation, Invisible Awareness was launched on February 12th.

The one goal of the organization is to share 1Story@aTime, every single month with a culmination on May 12th which is the International ME/CFS Day.

The launching of Invisible Awareness was met with such passion, welcome and excitement that in one 24-hour period, over 1,000 people were introduced to Laurel’s story, which exemplifies the incredible devastation that approximately 25% of ME/CFS suffers endure.

Unable to walk, stand, shower, read using her eyes, speak above a whisper, Laurel is symbolic to the unspeakable challenges that have been allowed to be ignored by the medical and governmental organizations in countries all over the globe.

Despite these challenges, Laurel remains positive and hopeful, while continuing – in spite of all adversity – to hang on to her aspirations and dreams, even if she has to do so on some by days, by her fingernails, hanging on with her last morsel of determination.

Unfortunately, as I stated above, Laurel is one of millions, who face this horrendous illness day in and day out, all over the world.

ME/CFS affects those who have it in a myriad of ways.  Very few people ever recover.  Some regain some semblance of normalcy – albeit a new normalcy - in their lives, while others live in isolation, unable to venture out into the world very often … or ever.

Many are bedbound, house-bound, and wheel-chair dependent, unable to accomplish the simplest tasks because of the neurological damage occurring in their brains.

Bathing, brushing teeth, walking, exercising, going to a movie, eating at a restaurant, standing up right for any length of time, have become things that are done inconsistently at best.

Engaging in the world outside has become utterly toxic to those with ME/CFS because of the myriad of stimuli their broken body and brain has to process.

Times are changing, however.  No longer willing to be relegated to the dark corners of their communities, hidden from view behind the four walls of their abodes, ME/CFS sufferers are no longer willing to remain invisible from a world that has unwittingly moved onward without them.

Through Invisible Awareness, and many new organizations like it, ME/CFS sufferers are finding their voices, telling their stories, and pushing back against a climate of intimidation that has too long squelched the truth.

They are reaching deep within themselves, garnering up any morsel of energy they can find, squaring their shoulders, lifting their chins, and choosing to become visible.

All they ask in return, is for you to read their stories, listen with a compassionate heart, and stand next to them, undergirding them with your strength, in raising awareness about an illness that has been allowed to remain invisible for much too long.

I highly recommend checking out Ayo’s own personal blog, Discovering Purpose , as it is full of motivational and informative articles.  In addition, if your are able, you can sign up to receive notification when the next copy of Life Skills Magazine comes out by going here .

Determined to continue forward,

"Author's Signature"

© 2011, 4Walls and AView . All rights reserved.

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