I am not sure if you know that I suffer from a disease called Ankylosing Spondylitis. It took thirty-two difficult years to finally get a diagnosis that would forever change my life. There were times that I wanted to give up and there was a time I planned to commit suicide, but for whatever reason I am still here. I know the reasons are for my family and because it is not my time yet, but what if the reason I didn’t succeed was because October 4, 2012 was pre destined and I needed to be here to do it. Okay Okay that is giving my self too much credit and worth, but I still wonder.
This is a day that for me will go down in My Ankylosing Spondylitis history. A day in which I took a life time of pain and suffering and turned it into something positive, something healing and productive. Something that not only validates me as a human being who suffers from Ankylosing Spondylitis but all of us.
The Spondylitis Association of America honored all of us, by showing the world that the Faces of Ankylosing Spondylitis are real people.
Thank you from the bottom of my heart, you will never know the true value of your gift to all of us on this blessed day
Today I am grateful, for this moment in time, that not only is our voices being heard, but we are being seen as people and not a blue ribbon of awareness or a statistic of facts.
October 4, 2012, The Faces of Ankylosing Spondylitis made history, well in my eyes and those of us that suffer from Ankylosing Spondylitis feel that way.
We spend so much of our personal time, money and our “spoons” working to raise awareness for this disease, that it has finally been recognized and validated and honored at least that is how I feel.
The Spondylitis Association of America posted on their website the following….
Drum roll please! ~~~ We have an announcement to make!
To help celebrate the upcoming One Year Anniversary of The Faces Of Ankylosing Spondylitis
, and honor everyone who has bravely shared their face and story, SAA will be featuring Faces of AS on our site!!
We are highlighting the project, as well as the individual “Faces” on our site, one by one, on its own special page.
We hope to eventually have all 1,000 Faces (that the project is well on its way to collect!) linked to and featured on SAA’s website.
We salute and thank the creator of Faces of AS – Cookie Hopper, and everyone who has sent in their stories so that others may know that they are not alone.
This week’s featured “Face” is the first entry – Kevin Andrews
. We hope you will revisit each Face with us, and share them again so that even more people will know about this wonderful project, and know that “AS has a face”!
They had honored us by approaching me about posting stories on the site, I figured we would be mixed among the Your Stories section. Humbled by the request I couldn’t say no! Imagine my suprise when I realized that they kindly designated a complete section to us. A WHOLE SECTION and PAGE! It doesn’t get any better than that folks!
We did it, ALL OF US, together, everyone who submitted their story, shared their story, tweeted, forwarded, read, posted and shared, every thing any one did made a difference to bringing us to this point in Ankylosing Spondylitis history.
I hope this will encourage others to follow their hearts and know that you can be the change you want to be, you just have to do it.
For me personally this has been life changing, heart lifting and soul healing, because I took a lifetime of what a disease took away from me, BACK.
I took back all the pain, the depression, the hell that the doctors and this disease put me through and made something beautiful out of it.
Today when I woke up, my spirit was light and soothed, my albatross (A.S) no longer has the power it once had, I am looking forward to seeing what I can accomplish next.
Thank you all for a remarkable year.
Spondylitis Association of America…. I am doubtful you will ever realize the magnitude of pride, you have given to each and every one of us, by not only validating us as human beings and individuals but by giving a voice to be heard, and a place to be seen.
I will be forever grateful,
Sincerely Cookie Hopper
Thank you so much! It is our immense pleasure and honor to give a second home to your beautiful Faces of AS project on SAA’s website. We share the same goals and dreams, and it’s a wonderful thing when we can all work together to move closer to them. Your project has already given the over 600 people a voice, YOU did that; and if we can help amplify those voices so more people hear them – we are thrilled to do it!! ♥