Question One: What inspired this movement?
During the month of September 2011, a friend of mine made a post about a friend of hers named Sara Frankl, who had Ankylosing Spondylitis and was in hospice care, she asked for us to keep her friend and family in our thoughts and prayers.
So on September 18, 2011, I wrote a post wanting to show my appreciation to all of the advocates that work so hard to raise awareness for my disease and shared Sara’s link hoping that when they became weary, she would be a gentle reminder why they worked so hard.
This is the actual post:
“Cookie Mntsr:
Today please take a moment out of your day, and remember why we work so hard to raise awareness, blog, run marathons, do auctions, do projects of awareness, why we work so hard to FIGHT against A.S. http://gitzengirl.blogspot.com/2011/09/looking-homeward.html
The first response I received back was “how can someone be dying from AS?”
Then to put it mildly world war three began, people became very heated and passionate about this sensitive subject, it ended up being life changing for me. During a serious conversation with a friend of mine, who is an advocate, I made the offhanded comment; “you know NO ONE is ever going to take Ankylosing Spondylitis seriously until we put a face to this disease. Her response back to me was, so do it, put a face to Ankylosing Spondylitis. So I did.
Question Two: You titled your project “The Faces of Ankylosing Spondylitis.” What is in a face?
I wasn’t sure I was going to be able to do this question because of the emotions it brought out. Tears fill my eyes because of the Faces I personally see while attempting to answer this question.
What is in a face, you ask.
Simply put everything. There are traces of each and every single one of us in each face posted.
If you look close enough…..
You will see the face of the person who lived their whole life never knowing what was wrong with them.
You will see the face of the person who fought years to be diagnosed.
You will see the face of the child who cried their self to sleep because they couldn’t go out and play.
You will see the face of someone who couldn’t imagine living their life with this disease and committed suicide.
You will see the face of the actor who didn’t lose his will to entertain and make people laugh.
You will see the face of the artist who in spite of having such an ugly disease was still able to make the world beautiful.
You will see the face of a spouse who lost their marriage because of Ankylosing Spondylitis.
You will see the face of people who fight to live normal happy lives.
You will see the face of people who fight not to be labeled drug seekers and addicts because they need medication to survive.
You will see the face of people willing to undergo life-threatening surgeries with no guarantees.
You will see the face of a young woman who even on her deathbed was able to inspire us to choose joy.
You will see the face of people who struggle to find a way to lead fulfilling and happy lives with bodies racked with pain.
You will see the face of a man who never thought he would be able to sit down again only to be given the chance to once more.
You will see the faces of those who came before us, who are here now and those who will come after us.
You will see the faces of everyday people who are courageous and strong.
You will see the face of Ankylosing Spondylitis.
And if you look close enough you may even see yourself.
Question Three: In your description of the movement you share that “you are not a victim for sharing your story.” Can you expound on this?
We live in a society that if you are ill, disabled or different you are often times made to feel inferior to those who would be considered “normal” by socially accepted standards. Most people as children are encouraged to be the best that you can be, smarter, prettier, thinner, stronger or athletic so you will be socially accepted. Whether we want to admit it or not, there is an accepted way of thinking toward the disabled or chronically ill that results in people being made to feel invisible, ashamed or uneasy especially when speaking our truth. Sometimes when we openly admit our vulnerabilities or differences were subjected to being made to believe we are “victims.” We want to be seen and heard but in doing so it burdens us with the labels society gives us. I try to inspire the embracing of your truth and being real about who you are and not allow society or Ankylosing Spondylitis to define you. Every person who has had the courage to share their Face is a hero to me, they are fighting to be validated and accounted for while telling the world I am a human being who happens to have Ankylosing Spondylitis and I will no longer be invisible or labeled.
Question Four: What were some of the challenges of getting people to share their stories?
Where do I begin? Why should I? What is the purpose? What good does it do?
During the month of September 2011, a friend of mine made a post about a friend of hers named Sara Frankl, who had Ankylosing Spondylitis and was in hospice care, she asked for us to keep her friend and family in our thoughts and prayers.
So on September 18, 2011, I wrote a post wanting to show my appreciation to all of the advocates that work so hard to raise awareness for my disease and shared Sara’s link hoping that when they became weary, she would be a gentle reminder why they worked so hard.
This is the actual post:
“Cookie Mntsr:
Today please take a moment out of your day, and remember why we work so hard to raise awareness, blog, run marathons, do auctions, do projects of awareness, why we work so hard to FIGHT against A.S. http://gitzengirl.blogspot.com/2011/09/looking-homeward.html
The first response I received back was “how can someone be dying from AS?”
Then to put it mildly world war three began, people became very heated and passionate about this sensitive subject, it ended up being life changing for me. During a serious conversation with a friend of mine, who is an advocate, I made the offhanded comment; “you know NO ONE is ever going to take Ankylosing Spondylitis seriously until we put a face to this disease. Her response back to me was, so do it, put a face to Ankylosing Spondylitis. So I did.
Question Two: You titled your project “The Faces of Ankylosing Spondylitis.” What is in a face?
I wasn’t sure I was going to be able to do this question because of the emotions it brought out. Tears fill my eyes because of the Faces I personally see while attempting to answer this question.
What is in a face, you ask.
Simply put everything. There are traces of each and every single one of us in each face posted.
If you look close enough…..
You will see the face of the person who lived their whole life never knowing what was wrong with them.
You will see the face of the person who fought years to be diagnosed.
You will see the face of the child who cried their self to sleep because they couldn’t go out and play.
You will see the face of someone who couldn’t imagine living their life with this disease and committed suicide.
You will see the face of the actor who didn’t lose his will to entertain and make people laugh.
You will see the face of the artist who in spite of having such an ugly disease was still able to make the world beautiful.
You will see the face of a spouse who lost their marriage because of Ankylosing Spondylitis.
You will see the face of people who fight to live normal happy lives.
You will see the face of people who fight not to be labeled drug seekers and addicts because they need medication to survive.
You will see the face of people willing to undergo life-threatening surgeries with no guarantees.
You will see the face of a young woman who even on her deathbed was able to inspire us to choose joy.
You will see the face of people who struggle to find a way to lead fulfilling and happy lives with bodies racked with pain.
You will see the face of a man who never thought he would be able to sit down again only to be given the chance to once more.
You will see the faces of those who came before us, who are here now and those who will come after us.
You will see the faces of everyday people who are courageous and strong.
You will see the face of Ankylosing Spondylitis.
And if you look close enough you may even see yourself.
Question Three: In your description of the movement you share that “you are not a victim for sharing your story.” Can you expound on this?
We live in a society that if you are ill, disabled or different you are often times made to feel inferior to those who would be considered “normal” by socially accepted standards. Most people as children are encouraged to be the best that you can be, smarter, prettier, thinner, stronger or athletic so you will be socially accepted. Whether we want to admit it or not, there is an accepted way of thinking toward the disabled or chronically ill that results in people being made to feel invisible, ashamed or uneasy especially when speaking our truth. Sometimes when we openly admit our vulnerabilities or differences were subjected to being made to believe we are “victims.” We want to be seen and heard but in doing so it burdens us with the labels society gives us. I try to inspire the embracing of your truth and being real about who you are and not allow society or Ankylosing Spondylitis to define you. Every person who has had the courage to share their Face is a hero to me, they are fighting to be validated and accounted for while telling the world I am a human being who happens to have Ankylosing Spondylitis and I will no longer be invisible or labeled.
Question Four: What were some of the challenges of getting people to share their stories?
Where do I begin? Why should I? What is the purpose? What good does it do?
For me personally, the saddest challenge I have is convincing people that their Face is important, that it has meaning and it’s valuable. Most of the time people will say nobody cares about what I have to say, it won’t matter. It’s heartbreaking. Making them feel they have something of importance to share with the world about their life with Ankylosing Spondylitis is my biggest and most rewarding challenge of all.
Question Five: Among the 1,600 faces is your own. What was the experience like to write this?
If you will notice I’m not even in the top 50 Faces. I’m actually Face 62 and that’s only because someone asked me, when are you going to do yours and to be honest I was caught off guard because it never occurred to me to add myself. I didn’t feel I had anything of importance to contribute to this project or a story that was worth reading. But I realized if I expected people to be courageous enough to share their truth then so did I.
It was hard. It was exhausting. It was emotional and soul-wrenching. It was one of the most difficult things I had ever done. I remember the day I hit the publish button. I turned off my computer so I wouldn’t be tempted to delete it.
I honestly can’t find the words to describe how wonderful it felt to no longer have this locked up inside of me. I finally felt free because the burden of carrying this was no longer mine to carry alone, it was ours. In some small way, I felt “cured” because I was no longer invisible; I had found the strength to validate Cookie, a person who happens to have Ankylosing Spondylitis.
Question Six: In your story, you talk about searching for a diagnosis and all the subsequent moments of being told what “you are.” How do you maintain your identity while managing a chronic illness?
For me personally, this was and is the hardest thing I deal with. I fight daily not to become a label and stay true to who I am, no matter how uncomfortable it may make someone. I never know what label I will be given when around people.
I don’t want to get lost trying to fit my life in a way that makes others feel comfortable being around me.
Question Nine: You end with a list of the things for which you’re thankful. In light of all that you’ve been through, it’s a surprising way to end. What motivated this?
It’s the way I honestly feel. I wasn’t promised anything in life and everything to me is a blessing. I have a choice I can either be grateful or bitter. I choose to be grateful. I wanted people to walk away with how I choose to live my life instead of getting lost in the bitterness of my battle to be diagnosed.
Question Ten: Are any of the stories you collected particularly meaningful to you?
That is like a mother trying to say which of her children mean the most to her. Each and every one is important to me and affects me differently, but every time I publish a new Face for a moment it’s the Face of Stuart that I see. (A.S. Face 0500: Stuart)
Question Eleven: What does this community mean to you now?
It’s been my safe haven and personal hell on earth, but it means everything to me. It’s the only place that I feel “visible” and “normal”. I don’t have to hide behind a “fake smile” at times. I don’t have to answer the questions how are you, with the standard “I’m fine.” This community has given me the opportunity to learn who I really am and the courage to be the “real” me. It feels like home to me.
Question Twelve: Where do you go from here?
Why Mars of course! Mars seems to be the accepted “theme” of the Ankylosing Spondylitis Community. The Walk Your AS Off is making their way to the Planet Mars “One Step at a Time” and I’m trying to convince Robert Deal to share his story of how he fought Ankylosing Spondylitis to become the one and only Mick Mars. Maybe we’ll both reach “Mars” at the same time. That is my dream, but in all sincerity where do I go from here? My goal is to reach 2700 Faces and quietly become myself again. I want to be able to just sit back and absorb the enormity of what The Faces of Ankylosing Spondylitis accomplished and take pride in knowing that I was able to find the courage to create something so amazing and beautiful because of and in spite of having Ankylosing Spondylitis. That at the age of 52 I found the strength to take back what this disease had taken away from me, my self-worth.
Question Five: Among the 1,600 faces is your own. What was the experience like to write this?
If you will notice I’m not even in the top 50 Faces. I’m actually Face 62 and that’s only because someone asked me, when are you going to do yours and to be honest I was caught off guard because it never occurred to me to add myself. I didn’t feel I had anything of importance to contribute to this project or a story that was worth reading. But I realized if I expected people to be courageous enough to share their truth then so did I.
It was hard. It was exhausting. It was emotional and soul-wrenching. It was one of the most difficult things I had ever done. I remember the day I hit the publish button. I turned off my computer so I wouldn’t be tempted to delete it.
I honestly can’t find the words to describe how wonderful it felt to no longer have this locked up inside of me. I finally felt free because the burden of carrying this was no longer mine to carry alone, it was ours. In some small way, I felt “cured” because I was no longer invisible; I had found the strength to validate Cookie, a person who happens to have Ankylosing Spondylitis.
Question Six: In your story, you talk about searching for a diagnosis and all the subsequent moments of being told what “you are.” How do you maintain your identity while managing a chronic illness?
For me personally, this was and is the hardest thing I deal with. I fight daily not to become a label and stay true to who I am, no matter how uncomfortable it may make someone. I never know what label I will be given when around people.
If you struggle to participate in the normal activities because of your illness you may be labeled as ‘lazy.”
If you find the courage to be open and honest about how bad it really is sometimes you may be labeled as a whiner or complainer.
If you find yourself in so much pain that you need something to help you get through it you may be labeled as a junkie.
If you seek out medical attention and they don’t know how to treat you or what should be done you may be labeled as a drug seeker.
If you cancel at the last minute or just can’t make the outing then you may be labeled as a party pooper or killjoy.
If you try to be happy and find a meaningful life then you may be labeled as delusional or not being real about things.
If you decide to speak out about your disease then you may be labeled as your disease or that you’re letting your disease define you.
Honestly, there are times I don’t know how to act or respond.
I have an invisible disease but I don’t want to live my life as an invisible person.
I want to be true to myself just like everyone else does.
I don’t want everything I do or say to be dissected or have underlining meanings attached to it.
I don’t want to get lost trying to fit my life in a way that makes others feel comfortable being around me.
I want to be able to live my life by my true identity which is simply a human being that is no better or less than you.
Question Seven: So how should we talk about chronic illness?
We need to talk about chronic illness openly and honestly. We need to be able to talk about this without judgment or assumptions. We need to be able to listen and express ourselves without feeling defensive.
Question Seven: So how should we talk about chronic illness?
We need to talk about chronic illness openly and honestly. We need to be able to talk about this without judgment or assumptions. We need to be able to listen and express ourselves without feeling defensive.
We need to be emphatic and understanding and most of all we need to put each other in each other’s places and realize that this could be you, on either side of the table.
We need to be real, factual and open to ideas and suggestions.
We need to be willing to speak about and listen as if your life depends on it because it does.
Question Eight: What’s the significance of having a space to share your story?
I’m not sure there is a way to explain the significance of this space to those who don’t suffer from Ankylosing Spondylitis. I don’t even know if we truly understand what this space possible means to each other.
Question Eight: What’s the significance of having a space to share your story?
I’m not sure there is a way to explain the significance of this space to those who don’t suffer from Ankylosing Spondylitis. I don’t even know if we truly understand what this space possible means to each other.
It’s a space that allows us the opportunity to educate others about Ankylosing Spondylitis but allows us to learn from each other.
It’s a space where we hope to inspire others to have the compassion to those of us who suffer from chronic illnesses, all the while inspiring us to be compassionate to ourselves and those like us.
It’s a space that is full of courage, hope, strength, struggles, triumph, and truths.
It’s a space for people living with an invisible disease among millions who either can’t or won’t see you and being able to validate ourselves.
It’s a space where we hope to be understood and accepted just as we are and to learn to accept ourselves.
For me personally, I hope it’s a space that allows someone to have the courage to be their true authentic self and find inner peace in doing so.
Question Nine: You end with a list of the things for which you’re thankful. In light of all that you’ve been through, it’s a surprising way to end. What motivated this?
It’s the way I honestly feel. I wasn’t promised anything in life and everything to me is a blessing. I have a choice I can either be grateful or bitter. I choose to be grateful. I wanted people to walk away with how I choose to live my life instead of getting lost in the bitterness of my battle to be diagnosed.
Question Ten: Are any of the stories you collected particularly meaningful to you?
That is like a mother trying to say which of her children mean the most to her. Each and every one is important to me and affects me differently, but every time I publish a new Face for a moment it’s the Face of Stuart that I see. (A.S. Face 0500: Stuart)
Question Eleven: What does this community mean to you now?
It’s been my safe haven and personal hell on earth, but it means everything to me. It’s the only place that I feel “visible” and “normal”. I don’t have to hide behind a “fake smile” at times. I don’t have to answer the questions how are you, with the standard “I’m fine.” This community has given me the opportunity to learn who I really am and the courage to be the “real” me. It feels like home to me.
Question Twelve: Where do you go from here?
Why Mars of course! Mars seems to be the accepted “theme” of the Ankylosing Spondylitis Community. The Walk Your AS Off is making their way to the Planet Mars “One Step at a Time” and I’m trying to convince Robert Deal to share his story of how he fought Ankylosing Spondylitis to become the one and only Mick Mars. Maybe we’ll both reach “Mars” at the same time. That is my dream, but in all sincerity where do I go from here? My goal is to reach 2700 Faces and quietly become myself again. I want to be able to just sit back and absorb the enormity of what The Faces of Ankylosing Spondylitis accomplished and take pride in knowing that I was able to find the courage to create something so amazing and beautiful because of and in spite of having Ankylosing Spondylitis. That at the age of 52 I found the strength to take back what this disease had taken away from me, my self-worth.
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