A.S. Faces Hurting But Never Losing Hope

What does Hope mean to you, what does it mean to any of us.

We all hope to live a normal, happy and productive life.

A life that you can look back on and say I did the best that I could with what I had.

Those of us, who live with Ankylosing Spondylitis, it means so much more.

We hope for a cure…

We hope to be heard…

We hope to be understood…

We hope to be validated…

We hope for awareness…

We hope for research funding…

We hope for a normal life…

We hope for the simple things…

Like being able to get out of bed, walking across the room, being able to sit down, or look up to the sky.

For some of us, the idea of hope is more powerful.

They hope to be relieved of their pain.

They hope to never wake up.

For some it is the hope of never losing hope…

The day I was given the diagnosis of Ankylosing Spondylitis, I was told it was nothing to worry about and I couldn’t do anything about it. So I walked out thinking okay, I am going to have to learn to live with the pain. It would be seven long painful and lonely years before I began to realize I couldn’t do this alone anymore.

My new doctor suggested I reach out to the Spondylitis Association of America and join their support group.

There I began to interact and connect with people who had Ankylosing Spondylitis. Even after all this time, I still had no clue! Talk about the ostrich in the sand syndrome! I had taken on the same attitude that my previous doctors had, no big deal, learn to live with it, nothing you can do, ect.

That became my reality until one day I read a post with the headline. “Who here goes to bed at night, hoping not to wake?” (Something I had wished for on many occasions.)

That question was posted by a young man named Stuart, several months after posting that question Stuart would be discovered dead at his computer.
Stuart was a bright young man who lost his battle with Ankylosing Spondylitis, he is the driving force behind my vision to make Ankylosing Spondylitis a house hold name.

Eventually like a lot of people I moved on to Facebook to connect with the Ankylosing Spondylitis community.

A friend of mine named Jennifer posted a link asking for prayers for her friend Sara, who also had Ankylosing Spondylitis and was under hospice care.

Hospice care? Ankylosing Spondylitis?

I was honestly stunned to learn about her and learn about her I did. She was one of the most beautiful spirits that ever walked the earth. I read her blog and was just amazed at how she had made something so beautiful out of something so ugly. She inspired me, my heart echoed with her words.

The sad truth was I had no real understanding about Ankylosing Spondylitis. I simply had no clue to the reality of this disease and the possibilities.

I found myself wishing I could do something as powerful and positive, but I was still only a spectator in the world of Ankylosing Spondylitis advocates and supporters, feeling that I honestly had nothing to contribute to the “cause”.

One evening I decided to write a thank you post to those who work tirelessly despite their pain and struggles of Ankylosing Spondylitis to raise awareness. I wanted to remind them the reason that they work so hard, was for the Stuart’s and the Sara’s of our community. The post ended up causing the opposite effect that I had desired and people became very upset over it.

-“The worst of life’s storms create the most beautiful rainbows.”
-Janelle Gingrich-Caudle

That beautiful quote is the truth about “The Faces of Ankylosing Spondylitis.”

Because of that one post, I became aware that we and the world needed to see our reality, the good, the bad and the ugly, but most of all the beauty and the hope of our community.

I met Kevin Andrews that night, and we became friends. I am ashamed to admit that I still was in the dark about Ankylosing Spondylitis, until I seen Kevin’s picture.

I had no clue that was possible.

I sat and wondered about my future and the future of others and wondered why my first doctor never told me of the possibilities. Did he not know? Did he not care? I was mad, but then I realized I had NO reason to be mad at him, I should be mad at myself, after all I was the ONE with Ankylosing Spondylitis not him! It was my responsibility to learn as much as I could and fight for a better quality of life. I had failed myself.

In a conversation with Kelly Christal Johnston, I said we will never make a difference as long as we continue to keep our selves hidden behind the blue ribbons. We will never be taken seriously if we don’t find a way to make people aware of the reality of Ankylosing Spondylitis and the possibilities of what could happen.

I said we need to put a Face to Ankylosing Spondylitis.

She said Then DO IT!

Me? Are you kidding?

I finally got the courage to have the “talk” with Kevin and doubted that anyone would be willing to put their self out there for the world to see. I wasn’t sure if I would be able to and it was my idea.

Bless his heart; he never hesitated, now that my friend is TRUE courage.

He said my mug is yours.

So now I had Face 1, but now what?

Well you see where we are now; I am getting ready to post Face 900.

We have Faces from all over the world, close to a half of a million views, and we have a permanent home on the Spondylitis Association of America’s website.

The quote for me that most represents the AS community the best is..

Hurting but hopeful…

By Kelly Christal Johnston creator of ASAP: Ankylosing Spondylitis Awareness Project.

It shows how strong we are, that even in our darkest hours we never lose hope.

But even after all this I still didn’t know what Ankylosing Spondylitis was capable of doing, until I met our newest Face.

Hurting but hopeful, that is me,

but what would it be like to be

Hurting but never losing HOPE.

How would you feel to be trapped in a body that doesn’t move?

How would you feel to be trapped in a country that has no means to help you?

How would you feel to be trapped in a society that doesn’t care?

How would you feel to know that the only thing in life you have is HOPE?

Please take a moment and read Face 900, he is a person who is all of these things but Hope he does have.

He has the Hope that one day…

He may have the means to support himself.

He may have the means to receive medical treatment.

He may have the means to have the surgeries he needs for a better quality of life.

I hope that one day Faces of Ankylosing Spondylitis will bring a better understanding and awareness not only to those who live with this disease, but also to those who don’t.

I hope that we are able to make a difference in this mans life and the lives of others.

Please join me in Welcoming Our Newest Face…

Face 0900

May he find comfort in knowing he shared his story to make a difference.

One Response to “A.S. Faces Hurting But Never Losing Hope”

  1. Brilliant read – thank you so much

    Kevin Miller said this on August 27, 2013 at 2:18 pm | Reply (edit)

    Kevin, Thank you so much for taking the time to read it and for the kind words.

    Cookie Has A.S. said this on August 27, 2013 at 4:22 pm | Reply (edit)

    Wow! Dearest Cookie, i had no idea how your vision began. Thank you, thanks to ALL of you!

    Jacquie said this on August 27, 2013 at 6:46 pm | Reply (edit)

    I wanted people to know how Faces began, Thank you so much.

    Cookie Has A.S. said this on August 28, 2013 at 11:07 am | Reply (edit)

    Cookie, this is so beautifully written. Thank you for moving past your initial insecurities to create such a place for the Faces of A.S. Your dedication to this project and with encouraging others is evident in all you do. Thank you for your dedication to Ivanhoe! Ivan’s Hope (Ivan, Missy and I) appreciates you so very much.


    Elle Caudle said this on August 28, 2013 at 5:07 am | Reply (edit)

    Thank you so much for your kind words.

    Cookie Has A.S. said this on August 28, 2013 at 11:07 am | Reply (edit)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: