A.S. Face 0026 : Jeannette Anne Hays

As many others with ankylosing spondylitis, I’ve become passionate about helping raise awareness. It’s my hope (our hope) that future generations will receive early diagnosis and treatment before permanent damage is done to the body, less pain, and better yet … a cure.

Four years ago my stress levels greatly increased. It was like an avalanche hit me and my family. In the span of a year I was diagnosed with ankylosing spondylitis, psoriatic arthritis, mixed connective tissue disease, neuropathy, ”awake” seizures, osteoporosis (lost 1 1/2” of height), carpal and cubital tunnel, fibromyalgia and vasculitis. Inflammation affected my entire body, including my vascular system. My blood vessels were bursting which greatly frightened me. My immune system attacked everything including my heart, lungs and kidneys. I lost hearing in one of my ears for about a year, but am very happy to say that I’ve regained most of my hearing.

My story begins at a very early age. I was diagnosed with chronic inflammation of the lungs and allergic asthma when I was only 2 years old. I grew up sick, hospitalized a couple of times a year, so I knew nothing different. The joint pain started when I was around 16, but I remained silent about it as I had learned to hide my illness as much as possible for the sake of being able to participate in the activities I loved. Over the years the pain steadily increased. I made excuses and put it out of my mind as much as possible. I worked and went to college full-time, got my degree in graphic design, and continued to push myself for the future I had planned for my life. I’ve now come to realize that for the most part I lived in the future. Most tasks revolved around a long-term goal. That wasn’t much fun and I was riddled with anxiety about whether or not I was on ”schedule” with that plan. People aren’t trains. We each have a different path to take on this journey. Finding that ever-so-difficult balance between past, present and future is a great feat and a task that never ends.

Life forced me to confront many issues, head-on and quickly. What does one do when they’ve spent their life working hard, focused on the future, and then that near future becomes questionable? Live in the present, and draw strength from the past, with a beautiful glimmer of the future. Once I stopped trying to figure out who I was, or was meant to be, I became who I am. By truly releasing the past and the future, a total surrender, I was able to free myself to live in the moment and love fully.

Why can’t life remain like a calm stream instead of a rapidly flowing river? Consider the way a river beautifully sculpts the earth. Smooth is easy but also monotonous and uniform. Curves and grooves are provocative and thrilling, but can also be dangerous. Challenge brings about strength through humility and truth, and by recognizing faults and refining good qualities. Obstacles and pressures break down false pride and reveal who we truly are.

My favorite color is a unique cobalt blue – a beautiful, distinctive, deep, metallic blue that comes from Raku fired pottery. Raku pottery is fired twice and reaches temperatures around 1800°F. It’s able to endure this type of heat because it’s made from a special type of clay found in Japan that’s capable of withstanding ”thermal shock.” I mention Raku firing because I can’t help but compare that special clay to people put through the fire of life. It’s such an incredibly difficult process, but the result can be something truly extraordinary and beautiful.

At times I have a passionate dislike for character building events in life, but I know in the end they turn out to be worthwhile. How tormenting and paradoxical life can be while one matures. I sometimes find myself possessing a negative outlook on life just to prepare myself for the worst outcome possible … but never without a mustard seed of faith that a mountain might actually move beneath my feet. Pessimism is a way to spare one’s self, but not entirely. Faith is the key to survival. It’s the acceptance of what is, but also the knowledge, hope, and appreciation of something better, no matter how small the improvement. Life’s calamity builds strength for future trials, and with each new tragedy comes a renewed peace and spirit equipped for the next turn of the kaleidoscope of life.

Forth Worth, Texas United States of America

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13 Responses to “A.S. Face 0026 : Jeannette Anne Hays”

  1. Dear Jeannette,
    As always I love reading your work! I love the way you did your picture.
    Thank you so much for helping me make my vision come true!

    Sincerely Cookie

  2. Simply Wonderful. Thank you.

    Deanna said this on October 19, 2011 at 11:49 am

  3. beautiful story

    Deana Devries said this on October 24, 2011 at 3:20 pm

  4. “My blood vessels were bursting which greatly frightened me. ”

    Mine too, didn’t know it’s caused by inflammation, didn’t know it’s just another gift from AS. I’m glad you mentioned that !
    Thanks for sharing your story !

    Lilith Eden said this on November 13, 2011 at 10:36 pm

  5. Hello Jeannette, I am Luis and while reading at your statement found that you are graphic designer, just as I am. I just met an A.S. Group in Dallas and I am trying to meet more people like us to understand this illness, I was diagnosed last year in May. As soon as I have some free time I will post some of my history here. Regards and have a week free of pain. 🙂

    • Thank you Luis. I’d love to meet with other ASers in the area! I’m sorry this reply is so late. Until today I didn’t realize there were comments on my story.

  6. I am in Frisco TX. Not too far from you. I grew up in Rochester NY. I recently got diagnosed with AS. I love your picture of this beautiful cobalt blue and how you compare it to our lives. I would like to share it with a friend that is going through an autoimmune process. I will give her the link to this page. Thank you so much for sharing these encouraging words…..

  7. Jeannette, your story was very hypnotic, much like your picture and the blue drawing. I’m not an overly deep person, but you seem to be an extremely good writer with an amazing ability to express herself. I particularly liked your “passionate dislike for character building events” comment, so true…

    I work in Fort Worth. From some of the comments you’ve received and some of the other faces, it looks as if there are quite a few of us “AS” folks around the Metroplex….quite possibly we’ve walked by each other many times, trying to stand tall as we pass on by while disguising our real pain.

    Thanks for sharing your story.

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