A Vision

I am only one, but still I am one.

I cannot do everything, but still I can do something;

and because I cannot do everything,

I will not refuse to do something that I can do.

 Hellen Keller

My name is Cookie and I belong to a community that is made up of people who have a disease called Ankylosing Spondylitis. I’ve been a part of the A.S. community for about four  years now, before finding this group, I spent most of my life, feeling alone and isolated with my disease. I became involved with the Spondylitis Association of America, and their support group. It was amazing to finally find a place, where people understood me and ‘got it.’ This is where I met some amazing people.

The first person I met was Michael Smith who is the creator and mayor of Spondyville. He is also the manager of the SpondyCafe, I hear the food is spondylicious! The SpondyCafe is a place where all the spondy’s meet on Saturdays to have a chat session with each other. It’s a lot of fun to meet there and hang out.  He is also the guardian of Stiffy the Snowspondy and Spiffy the Snowspondy and their family and friends. Those two Snowspondys  travel the world touching people’s lives and making it really seem like It’s A Small World after all. Through their adventures in meeting people with Ankylosing Spondylitis they’ve helped connect and blend us all into one A.S. family. They allow me to travel to places I have only dreamed about and put faces to my new friends.  Michael also uses his talent to bring a sense of adventure and fun to the world of A.S. He also writes some very soul touching material. (That I love stealing.) He manages to bring laughter into a world that is often times depressing and overwhelming.

Then I met Kelly Christal Johnston, who used her talent and passion to create HurtingButHopeful, to educate and bring awareness to people about Ankylosing Spondylitis.  Hurtingbuthopeful is an emotional and powerful blog about her life as a young wife, mother and A.S. sufferer. She allows the world to see her raw emotions, her hope, her desires, her pain and her truth in dealing with Ankylosing Spondylitis. She is a very courageous young woman, who is helping people find the courage to stand up and speak the truth about their lives with this awful disease. She has inspired me to step up and do my part in the Ankylosing Spondylitis awareness. She is the cofounder of A.S.A.P. She is also the cofounder of the Hope and Apples Campaign. She created Masquerade of Words blog carnival which is a group of people who write blogs on how Ankylosing Spondylitis affects their lives. She has done interviews about Ankylosing Spondylitis and written articles to share with the community. She makes inspirational videos. She is dedicated and always involved in some project to help bring awareness and funding to the organizations that help people with Ankylosing Spondylitis. Sometimes it seems like she is on a one person mission to tell every single person about Ankylosing Spondylitis. Her sincere dedication and drive is simply heartwarming to watch. She is very committed to raising awareness and helping others.

Then I met Sean who was determined to bring Ankylosing Spondylitis into the research world that he works in, his determination began when he was diagnosed with A.S. and realized that no one  in his own research  lab, had ever heard about his disease, Ankylosing Spondylitis. He is also responsible for changing my life and the way I deal with Ankylosing Spondylitis. One day he posted on the support forum, “Happiness: Is forgiving your self for being human.” That one phrase changed my life forever, reminding me that I can only do my best with what I have. I have stopped punishing myself for something I have no control over, giving myself the chance to find joy in this chapter of my life.

Kelly and Sean joined forces to create A.S.A.P Ankylosing Spondylitis Awareness Project and the A.S. community has never been the same.  They came up with an awesome design and I had a T-shirt made so I could wear it when I went to the support groups.  They sold some of them in order to raise funds for the Spondylitis Association of America.  They were so full of life, energy and NEW HOPE that they couldn’t help but inspire and bring a change into our community. An Ankylosing Spondylitis Revolution was created and is still in full force.

There has been so many amazing projects to come to our community. New groups formed. New blogs and blogging groups. New awareness projects. New projects to help educate about Ankylosing Spondylitis. New ways of fund-raising, so many things.  The community is becoming united in raising awareness and sharing our lives with Ankylosing Spondylitis  to the world. I personally feel that this new energy and drive to become more involved in raising awareness was inspired by Kelly and Sean and  The A.S.A.P.  When Ankylosing Spondylitis Awareness Project began getting larger, a new team member was brought on board Rick, these three amazing people have breathed new life into the Awareness Movement.

We also have Jennifer Visscher who created The Feeding Edge and Art Apple A day. She did a year-long project creating an apple a day to raise awareness and funds for Ankylosing Spondylitis and the Spondylitis Association of America. She ended her year-long journey in the BIG APPLE and managed to bring a new meaning to the old phrase An apple a day keeps the doctor away.

Kelly Christal Johnston, Rick and Jennifer Visscher joined forces to do The HopeAndApples Campaign, where people would be able to share their stories and create an apple in their honor. It was such an amazing and successful project, so inspirational to me and others.  Such beautiful work, life changing and touching. Amazing, simply amazing.

All these amazing people set in motion the opening up of people’s eyes, hearts and souls to wanting to be a part of this new generation of awareness. We no longer want to be invisible and not heard!  We want to be seen and understood. We have stories to share. We have Voices that need to speak. We have Hope. There are so many wonderful people I have met in the past four  years doing such amazing jobs to bring awareness. I mean honestly how could you NOT want to do something as great as what you are experiencing around you.

I also met Gillian Eames who is on a mission to have the largest petition ever to be presented in her community concerning the treatment of Ankylosing Spondylitis patients, she works hard bringing awareness to the Ankylosing Spondylitis Community in the United Kingdom.

Kelly, is the one who invited me into the world of Facebook and blogging (yes you can blame her) and from there my life with Ankylosing Spondylitis has changed and thrived. I feel alive, productive and hopeful.  I belong to an amazing group of bloggers at MasqueradeofWords. These people are wonderful writers. I have learned so much from them about blogging and life. I thank God every day for them.

I came across a story about a young beautiful spirited woman who was loosing her battle with Ankylosing Spondylitis. Sara Frankl made me realize I could do something important to bring awareness about Ankylosing Spondylitis, but I didn’t know what.  This group of people have become my family and they mean the world to me. ( I know at this moment I have left people out. Please know that each and every one of you are important to me and make a huge difference in my life and the world of A.S.)

Then I met  Kevin Andrews, whose story is the inspiration for me to do The Faces of Ankylosing Spondylitis.

He is the creator of A.S.R.A. Ankylosing Spondylitis Rheumatoid Arthritis United. Kevin shared his blog called “Living With A.S”  This courageous man showed the world the reality of his life with A.S. I was touched beyond words.

The best and most beautiful things in the world can not be seen or even touched.
They must be felt with the heart. Helen Keller

I believe that with every fiber of my being, but I also know that seeing is believing.

After reading Kevin’s blog, I was amazed and awed at his courage of showing us the reality that this disease has caused in his life. I have participated in helping raise awareness about Ankylosing Spondylitis. I have enjoyed all of the causes and projects we have had in our community. I love the ones that show us the humorous side of A.S. I love the ones that give us Hope about A.S. I appreciate the ones that educate us about A.S. I am grateful for the ones that allow us to support each other by sharing our insights and wisdom about A.S. I support the ones that raise funds for the organizations for A.S. but deep inside I still felt that there was something missing, one about the reality of this disease and how it affects our lives and souls.

I am a cancer survivor and I have become a faithful follower of the Scar project. It’s an amazing and powerful project that allows us to see the reality of what cancer does to people. I was humbled by the courage of so many people willing to show the world that breast cancer is more than just a pink ribbon; it is about courage, pain, fear, death and survival. This project has touched me in so many ways, not only for myself as a survivor but mostly for the ones that I’ve loved and lost due to cancer. I think over time people get so used to seeing the ribbons of awareness that they actually get immune to what they stand for. The lives destroyed, the courage to fight, the fear of losing, the shame of destroyed bodies, the desperation in one’s soul, those ribbons each and every one of them no matter what the color is represents a person.

I wanted people with Ankylosing Spondylitis to have a place where they are honored for having the courage to share their lives with us. I wanted people to understand that this disease isn’t just about Ankylosing Spondylitis, it’s about destruction of lives and the courage to fight for a life of quality and the Hope to continue to live the best life that you are able to and finding the faith to do so. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.

I wanted to make sure that Stuart and Sara  were never forgotten.

Stuart  is a young man I met while on the Spondylitis Association of America Support forum. He was a bright young man who lost his battle with Ankylosing Spondylitis, he is the driving force of my desire to make Ankylosing Spondylitis a house hold name.  He touched my heart and buried himself deep within my soul, and with each new “Face” I add or story I read, it is him who whispers the encouragement I need to continue. I wanted to do my best to show the world what Ankylosing Spondylitis really is. So we can change the future so that  one day what happened to Stuart will never happen again.

A.S. Awareness Takes Courage, Determination, Faith, Hope, Drive, Passion, and  Backbone I want to thank each and every one of you who work together as one to bring awareness to the world about Ankylosing Spondylitis Like our disease we should FUSE together to be the Backbone to finding a cure!

At this time of publishing this post, I have already posted 22 Faces and to say I am humbled is an understatement to the emotion and pride I have felt in every submission I have received and the emails that have been written. I will be forever grateful to each and every one of you for helping me fulfill my vision.

Sincerely Cookie

Dedicated in Honor of

Stuart  ( 1982- Sept.16,2009)  I realized that I started this project on the two year anniversary that Stuart’s story was made public on Oct. 8,2009

Sara Frankl ( May 13, 1973- September 24, 2011)

Dedicated To

 Stuart

And

The Stuart’s of the Past

The Stuart’s of the Present

The Stuart’s of the Future

But

Most of all to

The Stuart inside of  each of Us.

Today Is Your Day!


12 Responses to “A Vision”

  1. Such a wonderful post. The entire AS community has helped me tremendously! I’m so thankful for all the questions answered, information given, and tears and laughs shared. (only to be understood by fellow ASers) I too am working on my “face of AS” story… I am relizing that it is the “sharing” that is a very important part of living with this disease, and learning to embrace all that comes with it. I want to thank YOU and all the others mentioned in your post… you all do make a difference!! THANK YOU!!

    • Dear Tucker,
      Thank you so much for your kind words. It is the sharing of our stories, learning that we are not alone that makes us stronger and gives us hope and courage to make the best out of our lives.
      I look forward to adding your story along with others.
      Sincerely Cookie

  2. Thank you for this Cookie it is very well written and I agree with every thing you say. I am honored to be a part of this and really hope my story helps others to love themselves for who they are and not be ashamed of there body’s. The body is only a shell that carry’s the person no matter what your body looks like ie tall and slim, short and fat, or bent and ugly like mine its whats inside that matters. The majority of people I have met with AS have been very loving caring people who support each other and live life to the full. If a person cant see past the way you look and get to know the real you they are not worth knowing.

    Love to you and all posters on The faces of AS.

  3. Dear Kevin,

    Thank you so much for your kind words, I am doing my best to make it perfect. It has been so heart warming doing this and I can’t wait till we are over the 1000 mark. I am so blessed. Thank you for being my friend and trusting me with your story!

    Sincerely Cookie

  4. Sean says: Thanks to everyone who has shared their story so far. I love this project. I respect you all for being so brave.

    Cookie says: Thank you Sean. I am simply amazed and humbled at the response so far, I love it too.

    Kelly says: I have to say I am pretty impressed .Cookie Monster came up with the most successful AS awareness project of all time..and is practically doing it all by herself! She is a one woman miracle worker, and I am so very very proud of her! You keep up that hard work and I tell you so much good is coming your way! Love you Cookie, Great job, keep it up!!

    Cookie: You are too kind Kelly, Thank you, we have had over 13,000 hits so far yesterday was the best yet 1876 views 7 stories isnt it amazing!

    Jackie: Absolutely Kelly, she is a force of nature xxxx

    Cookie: Thank you Jackie you all bring out the best in me!

  5. Wow, what are the chances. My sons name is Stuart Ray. He is eleven. He is showing signs of this disease. Wish I would have had the chance to meet him. May he rest in peace.
    I have been reading Saras blogs. She was an amazing woman. What an aweful, tragic disease to take her so young. May she also rest in peace.

  6. WOW! An incredibly touching post Cookie. I too felt humbled when viewing the images of The SCAR Project. Breast Cancer is without question, about more than pink ribbons. You are an incredibly inspirational woman to have endured what you have and to dedicate so much of yourself to helping others. I was inspired to see that so many people blog about AS. I too started blogging very recently, sharing my knowledge of natural remedies and ways of living a healthy lifestyle and its impact on AS symptoms. I also share many positive and encouraging messages to help in maintaining a positive outlook, in spite of living with chronic illness. This is actually a goal that I’ve had for quite a few years, and I’ve come close to launching an AS blog several times, but could never get past the initial post. Being quite busy running a business and taking care of family, made it quite a challenge to make blogging a priority. However, after continually being notified via FB of Faces of AS stories being posted, over what seemed like a month or more. Through subliminal messaging, I was moved to also share my story and the burning desire to continue speaking about AS hasn’t stopped. Thank you for being inspired to begin this project, thank you for inspiring me to share my story and thank you for giving us such a unique way of showing support for our fellow AS sufferers.

  7. Hello,
    I would LOVE to help you all in your cause, but I do not have AS, I have USpA – Undifferentiated Spondyloarthropathy. The main difference is mine started in my hands not my back but I still carry the genes and still have the pain. I was wondering if I could be one of your “faces”.

  8. […] touched so many. There is really no better way to describe her project than how Cookie has, on her Vision page of Faces of AS (which you should read in full – it’s beautiful and gives some shout-outs to fellow AS […]

    • Dear Amanda and Wego Health,

      Thank you for the hard work that you do and for bring awareness and recgonition to the work that health activist do. I for one, as all the other AS Activist I know appreciate more than you will ever know.
      Sincerely Cookie

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