Kelly Christal Johnston
1,000 Faces in 1,000 Words or Less
When I first met Cookie, I thought she was really weird. She “spoke” (everything was typed in online forums to start) differently than any other person I had ever met before. She would say things like, “ comes over and pulls up a chair, how are you today Kelly?” Her uniqueness was a breath of fresh air. So I’m hoping you will pull up a chair of your own, grab a cup of coffee, and settle in for a story about the infamous Cookie Monster (who is probably pretty mad about now, since she said this story was supposed to be about me, but I would much rather talk about her!)
Before Cookie arrived, the Spondylitis community was missing a LOT. It consisted of the SAA forum boards and that was pretty much it. There was a core group of us, and we talked, debated, researched, mused, laughed, fought…..but we had nowhere else to go, and we were constantly worried that the world did not know or care about AS. I knew that if AS awareness hadn’t kick started by then, that it wasn’t going to launch itself…so we started scheming (all innocently of course.) We decided that awareness had to be raised for AS and its related diseases, and that the job to raise it was most likely going to fall in the patients hands…meaning ours. Which of course meant Cookie and I had to volunteer for the job!
Soon after our plotting began, we both moved over to Facebook, and invited our friends…I did my best to connect every AS patient that created a Facebook account, until I had a network of about 50 AS patients. By this point I realized the public did need to know about Spondylitis, and I had an idea of how to teach them. With the help of my “network” of AS patients/friends, I launched ASAP. Ankylosing Spondylitis Awareness Project was launched in December 2009, after I tossed the idea around within my core group of friends. It was decided that we needed to educate the general public (and some not so general, like drs, and patients, but I digress), that we needed to reach out to fellow Spondylitis patients and their families for support and to educate them and to help those misdiagnosed/undiagnosed, and that we needed to support as many Non-Profit Organizations dedicated to AS/Spondylitis/Arthritis that we could find, starting with the SAA. ASAP took off like a rocket, and has been doing great ever since. We have over 7000 fans, and we have successfully partnered with many non-profits like Wego Health, the SAA, Faces of AS, the AF, and others. ASAP is completely 100% run by AS patients…and one of the best decisions we made was the one to bring Cookie on as Admin.
Cookie was always involved in ASAP, as far as being a sounding board, and major support system for me, but she didn’t become directly involved until she created the Faces project two years ago. I knew she would reach her goal, but I also knew she needed a platform for posting her faces. What better place to showcase Faces of AS than ASAP? The rest is as they say…history?? Cookie did exactly what she said she would do even though she dealt with personal illness, tragedy, stress and she did it all while working her “real job”. I wasn’t discouraged when I heard her goal of 1000 faces….nor was I worried when any of the other obstacles got in her way…I just thought to myself, “you better get out of her way, she’s coming through, whether you like it or not!”
The rest is pretty much history. Cookie has accomplished so much, she has brought together so many people, taught so many about AS, supported an entire community. One woman, who considers herself bent and broken, yet she is able to mend families, rebuild bridges between friends, and move mountains when it comes to getting things done for others. If someone needs her, she is there. “Consider it done,” she will say. I’m not sure what is in store in the future for Cookie, but I know whatever it is, it will be amazing. ASAP is a better place because of her, the SAA is a better place because of her, and the AS community is a better place because of her. Cookie has helped move the Spondylitis community into this generation, and out of the Stone Age. She has given hope to a community that was once hopeless, and joy to many who are joyless. Cookie is a breath of fresh air, and I am proud to call her my friend. She is perhaps the best thing to happen to this community, and on behalf of the entire Spondylitis community, on behalf of ASAP, I would like to say, thank you Cookie Monster, for everything you have done for us. We love you, and we THANK YOU! CONGRATS!!!
Now for the true reason of this project…
Hurting But Hopeful
I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS it doesn’t have me and I am very blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 15 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husbands parents passed away recently as well. It is hard raising two kids, while having a disability, and while not having a large family for support. I am blessed to have my father here with us, and he is a wonderful grandfather to my babies. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS advocate, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls.
When you live with an invisible illness, you learn to live with constant pain and defeat. No one knows you are sick, surely you couldn’t be sick, when you don’t look it…right? Wrong! Imagine this scenario : You are perfectly fine one day, then the next your entire body hurts. The pain is so bad, you go to the ER, crying, begging, and screaming for something to take the pain away. But instead of the ER helping you, they look at you suspiciously and they don’t believe you. They tell you the pain is a figment of your imagination, it is not real, so they discharge you with an antidepressant and a script for therapy. What would you do? Continue on in the scenario…after the ER you decide maybe you really are imagining the pain, but you decide to go for a second opinion…this pain is overwhelming and controlling every thought and movement you make…only when you get the second opinion the doctor blows you off again. You look fine, it is depression tricking your body into thinking it hurts, says the doctor. How would you feel?
That scenario is my life. I was told for 3 years that nothing was wrong with me, except that I was depressed. I was a hysterical woman, with “drug seeking behaviors”, never mind the fact that I had never even taken narcotics before. I was hopeless. Until a little piece of hope trickled into my soul. A rheumatologist finally listened long enough to do an MRI, and he finally knew where my pain was coming from…I had Ankylosing Spondylitis, and the pain I felt was REAL. Invisible to others, but constant to me. I was terrified to learn I had a chronic and lifelong condition that has no cure, but I was also hopeful because now I had a name for my pain, I wasnt making it up! I had solid proof, I was no longer walking around aimlessly trying to find answers. If I knew what I had, then I could try to fix it. Another glimmer of hope entered my heart. Once I was diagnosed I had a lot of questions; did everyone with AS hurt this bad? What treatment would be best for me? Did anyone else get told they were depressed before figuring out they actually had AS? When I was diagnosed, there was only one place to go to get answers from other ASer’s, The Spondylitis Association of America. I began to frequent their forum boards, trying desperately to connect on a personal level and to find the answers I was looking for. That is when hope seemed to seep into my soul all the while it created infinite ideas in my head.
I NEEDED to raise AS awareness. I needed people to understand how I felt. It began to consume me, with each step bringing me more hope. You see, there are approximately 33 million people world wide that have Spondylitis, approximately 2.4 million people with Spondylitis in the USA, and there are more people with Spondylitis than those with MS, Cystic Fibrosis, and ALS COMBINED. Let me stop for a second.
Have you heard of MS before? (Are you nodding your head yes?)
Have you heard of Cystic Fibrosis before? (Yes again, right?)
Ok, well what about ALS? Have you heard of it before?
I am going to assume you answered yes to all the above questions….because I answered yes to them. That is when I really got curious. I couldn’t understand why the disease I have is more prevalent that those three illnesses combined yet no one has ever heard of it before.
The big question is, have you ever heard of Ankylosing Spondylitis? (Yeah I didn’t know what it was until I was diagnosed too.) How can a disease afflict more than 33 MILLION PEOPLE around the world, yet no one has ever heard of it? I had to fix this problem. I had to bring hope to others with AS. That is when ASAP was founded. Remember I knew some people with AS from the SAA forums, and some of those people had friended me on Facebook. We all kind of tossed ideas around, knowing that if anyone was going to fix this problem of awareness it was going to have to be someone with AS. So in December of 2009 Ankylosing Spondylitis Awareness Project was founded by myself and Sean Ryder, a good friend with AS. We began as a group on Facebook, which has turned into over 7000 fans, a website called http://www.hurtingbuthopeful.org, multiple community projects, and the goal to support the SAA. But mostly, ASAP has been my hope. It is hope that one day so many people will know about Spondylitis that the SAA will have enough donations to fund the research for a cure . It is hope that every person in this world with AS will know at least one other person with AS to lean on. It is hope that my pain isn’t all in vain. I know that having Ankylosing Spondylitis is painful, and scary, but it has given me a purpose, and I am passionate about teaching others the hope they can find after they are diagnosed with AS.
Texas, United States of America