May 12th: International ME Awareness Day!


Well, we made it to the International ME Awareness Day!  I can’t believe the first half of the year is just about over!  Can you?

I wanted to let you know that we have much going on over at Becoming VISIBLE 4ME today!

First, our May 2011 Story is from Renee.  Renee has much wisdom to offer, has a huge heart, and is not only dealing with ME but is also dealing with Lymes Disease.  Can you say, daily challenge? And yet, she deals with these challenges everyday and does it with humor and grace.

Second, I was blessed to be able to interview my friend and author, Toni Bernhard about her life and her book, How to be Sick.  You definitely don’t want to miss this interview!  I learned some new things I didn’t know!

Third, I was doubly blessed to be able to do another interview.  This time with author, Rik Carlson, who is also the founder of the Vermont CFIDS Association and producer of the recent video called, Invisible.  I think you will thoroughly enjoy this interview as well!

Lastly, I will be starting my ‘Shielding 4ME’ Fundraiser and doing it for seven (7) straight days.  If you are interested in finding out why  or how to donate, check out my article on Becoming VISIBLE 4ME as well.

I would like to make one more note.  I apologize that I will not have any door prizes but my health is just not allowing me to do anything more than I have already done for this day of awareness.  I hope you can understand.

Furthermore, I felt the fundraiser was much more appropriate.

I’m looking forward to working with, and for you, in the coming year to raise further awareness, money and finding a causal link to Myalgic Encephalomyelitis (ME).

Don’t forget to share, share, share today!

Happy International ME Awareness Day!

Determined to continue forward,

"Red Signature"

March 2011 ME Story: Toni Bernhard


"author of How to Be Sick, Toni Bernhard

"author of How to Be Sick, Toni BernhardToday marks the second ME/CFS story being shared onBecoming VISIBLE 4ME by author, Toni Bernhard. Toni is the author of, How to Be Sick, and she has been dealing with the challenges of living with ME/CFS for a long time.

As a Buddist, she has learned how to incorporate her faith into her life in order to come to terms with a difficult hand that was dealt her.  Here is an excerpt of her story for your perusal.

In the summer of 2001, I had the next couple of decades of my life mapped out.  I’d be teaching law, traveling to visit my children and their families, and attending Buddhist meditation retreats.

Suddenly, everything changed.

To read the rest of her story, please click here.

Don’t forget to send her story viral by using the below listed social buttons!

Determined to continue forward,

"Author's Signature"

 

ME: Becoming Visible


"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"

Invisible Awareness Launch an Incredible Success!


Holy Cow!

I had hoped the launch of Invisible Awareness would be a success, but it surpassed even what I had imagined it might be able to do!  The stats that came in just left me gobsmacked.

By the end of the day 820 people had visited either, 4Walls and AView or Invisible Awareness, to read Laurel’s story.  That is 180 people shy of 1,000!  And, that is only on my blog and Invisible Awareness.  That does not include all the other blogs that Laurel’s story was posted on or all the times that her story was shared that I cannot track.

So, I can safely say that Laurel’s story reached over a 1,000 people in one day!  One day!

Imagine what we can all do together, every single month,  just by working together with a singular focus.  I am absolutely blown away … and totally excited at the possibilities!

Thank so much to everyone who helped make the launching day a great success!  And a special thanks to Laurel for willingly going first with her story.

In addition, I have now had several people contact me to share their stories in the upcoming months! As of the writing of this post, March, April, May and June are covered!  Again, I am totally stunned and humbled at what a group of exhausted, neurologically impaired individuals can do when we all work together. ;-) [and they call us lazy?  I mean really ;-)]

Makes you feel pretty good, huh!

Determined to continue forward,

"Author's Signature"

Invisible Awareness Launch REMINDER!


"New Logo and Badge for Invisible Awareness dot org"I just wanted to take a quick minute and remind everyone that Invisible Awareness dot org launches at midnight tonight!

We will be launching with Laurel’s story so when you have a chance tomorrow, please go by Invisible Awareness dot org and copy and paste a few paragraphs of her story onto your blog and let’s spend the day sharing away.

Also, please don’t forget to add a link to Invisible Awareness dot org at the end of your post.

I still need a story for March and one for April so please consider submitting your story.

For the May 12th story, I am in the process of trying to see if I can use Laura Hillenbrand’s story.  I am also working on perhaps getting an interview with her and with Ric Carlson.  Plus an interview with an ME/CFS author.

I will also be giving away a copy of, How to be Sick, by Toni Bernhard, to one lucky person on May 12th!  So, let’s get as many people interested in Invisible Awareness dot org as possible! (I’m hoping there will be other give aways as well!)  :-) [BTW, you don't have to have ME/CFS to help make ME/CFS visible! Anyone can take part and help us make ME/CFS visible!]

If you have any suggestions for ME/CFS authors I can interview, please let me know.

By the way, please sign up by email or grab the RRS feed so you will be notified of any other updates, interviews, videos, books, etc., added to the website during the month.

Unfortunately, I still need help with turning the blue butterfly up in the right hand corner into a blog badge.  Anyone with expertise in this area that can help me out, I would so appreciate that!

I am still resting, a LOT, but today is slightly better.  The headaches and eye aches have eased a tad, so I am keeping my online time under two hours a day, plus, I have started wearing sunglasses indoors when I sense the flu-like symptoms starting in my eyes.

Emotionally, I’m really excited, filled with anticipation, and determined to become visible in 2011!

Here’s to all of us becoming visible together in 2011!

P.S.  Please accept my apologies if I forgot your photo in the background.  I will be updating the background for March 12th, so if I forgot you, or you want to add your photo (calling all guys please!) just let me know!

FYI:  Dominique’s Column at Life Skills Magazine this month will talk about how Invisible Awareness came into being so don’t forget to check it out!  [Ugh...Was that self-promotion I just engaged in!  ;-) ]

Determined to continue forward,

"Author's Signature"