MyStory

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CF Blog…. Goal for 2013
I’m putting it all out there…
tired of feeling like my story is only mine.

January 2013
My name is Jeremy Thomley; I am 31 years old. I have an amazing lung disease called Cystic Fibrosis. Now wether you think it is amazing or not will depend on your momentum… You see, for me and another 30,000 CFer’s- this is a battle of will. Will I slowly allow myself to drown while my friends and family watch? or Will I use every power I have to fight for my life. If this sounds dramatic to you…there is an empty chair beside my hospital bed at UAB for the next few weeks, you can come tell me how mediocre is good enough and that being so ‘extreme’ is not the best way to live. I don’t start this blog to say “my way” is the right way to manage Cystic Fibrosis. I have kept quiet, even hid my disease for fear of appearing ungrateful or being pitied. No more.
I am a sculptor: I use steel to share a slice of my story. I don’t pretend that its wise to weld anything with a lung disease, and while I have fans and brain to keep me out of harms way… sewing would have been a safer outlet for creativity. My passion for climbing and sculpture drives me to meet many amazing people. They seem to hide in obscure places with wild tales of adventure. Climbers are literally the people who have fallen between the cracks. I love the friends and the culture we have created as we explore the gifts of the outdoors. Iv’e never had much in common with artsy people but i have learned to appreciate their madness and sacrifice. Most of my art work revolves around imperfect materials. I have found appreciation for my own flaws and for the flaws of others. A character worn car door from the desert has so many more stories to tell than its flawless counterpart. I take great interest in mending or celebrating the ‘broken’ and breathing new life into it. It has brought me closer to my Heavenly Father and helped me understand why sometimes the flawed or quirky can be beautiful.
My childhood is an emotional one… It is sacred to me & key in understanding my life.
In the interest of brevity I will not explain this as my Mother would. Instead I will pick up where I began to remember for myself. I was born of goodly parents who love me still. My mother being the principal caregiver and notorious authority on CF was a force to be reckoned with anytime we came near a doctor. Her love for me was overshadowed only by the vicious instinct to never give up. I was raised in this way, to never give up. In 1982 relatively little was known about CF. I can remember angry doctors who wanted to treat me, but my Mother refusing to send me to a hospital. Instead she being armed with a high school diploma and a library card began to treat me with herbs and enzymes. I began to grow and get strong. My stomach was my main issue as with most children back then with CF. I was not anticipated to live until age 5. I would obviously continue to live past all their deadlines. I remember growing up expecting each summer would be my last. I kept waiting for that heavy hammer to fall knocking the breath from me. Every birthday was and still is a celebration! My family’s prayers have somehow managed to hold me to this earth like strings on a balloon threatening to blow away.

There were many weird things about me that came from thinking “you will die soon.” Perhaps I was too afraid to say it out loud or ask my mom, she being so against it…somehow I embraced it (death that is). Perhaps because every other kid I knew with CF was nearly dead or gone. Especially at the CF camps they would send us all to, that was back before they realized our germs were communicable and we were killing each other. I grew up wild. I wasn’t meaning to rebel as much as refusing to live for anyone else. I was not particularly great at sports, I just remember them saying I wouldn’t develop as a man. I would be robbed of puberty by insufficient nutrition and an overall pessimism from doctors in Jackson. Once again my Mom was right, I was a late bloomer and allergic to all kinds of things but I made it.

I loved the Boy Scouts as a young man and was exposed to all kinds of adventure. The People I met through church and scouts shaped who I am.. I owe them a great deal for never treating me different because of CF. In fact it kind of lead me to keep it a secret or at least I never told anyone willingly. It was like admitting a weakness. After years of not taking enzymes and hurting all the time, I began to want to grow muscle. It seemed pretty lame that I could eat so much and never gain weight. I never had any fat on my body but it was hard to put on any mass. Of course wanting what i didn’t have… I decided to try the medicine again. Enzyme dosage was a tricky thing for me that took years to perfect. After swim team and breakdancing in high school I realized I wanted to serve a church mission for 2 years. This was a real test. To see if somehow i was able to live on my own. Sounds silly now but at the time nobody knew if I could do it. I went in the hospital twice on my mission. Once because my Mom had a bad feeling and the next time because I was sick. The tuneup I had come home for in Jackson had somehow weakened my immunity. Within a month I ended up in University Utah hospital at their gourmet CF center for 2weeks getting well again. I went back and finished my mission strong. FEV1 was at 82% back then. I was blessed.
A year after my mission I married my best friend. Taylor and I seemed unstoppable, we moved to the Florida Keys for 6 months where I began to weld aluminum in a fabrication shop. She was a server in the local restaurant and life was good on Little Torch Key. We volunteered at the sea turtle hospital a few islands away and made all kinds of friends. After months of fishing, scuba diving and catching lobster we came home to finish school. Ha, scuba diving… i drove my family crazy with that one. I have about 60 dives and would love to go again if I was in the right place. To finish school I had a lot of Spanish i needed and very little attention span to learn it in Mississippi. So we studied abroad in Mexico for a summer. Just before my college graduation I had an emergency appendix surgery that left me spinning for weeks. It was not easy coughing and watching stitches stretch and having to lay around till they healed so I could play again. This was the first time I tasted mortality… I saw I wasn’t invincible. It wasn’t long after that that Taylor and I got un-married and I was introduced to a new threat. Stress… this silent killer seemed to smother me and made everything harder. I’m no good at un-loving anybody so that took a lot of time. I have spent that time traveling mostly. I had climbed some before we got married and after getting a divorce I was called to the mountains. I fell in love with a peculiar sport that challenges me in a million ways. Because of climbing I found yoga. The search to control my breath no matter my activity became my credo. The world opened up to me as I met people from all over who loved being outside. My sculpture was impacted immediately, my body was challenged in a way I didn’t know people did for fun. I have shared campfire heart to hearts with many a friend from all walks of life. I breath DEEP all the goodness that has come my way. I am eternally grateful for my roots and the beautiful people I have loved. This story does not end here… In January you can find me at University of Alabama getting a tuneup on my lungs. The rest of the time I might be in my shop, or I might be on the road climbing. Thank you to my ever understanding & supportive family. -Love…. Jeremy Thomley 1/2013

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7 Responses to “MyStory”

  1. March 28, 2013 at 6:17 PM #

    Im so proud of you for sharing your story. Dreams do come Tru.
    Love you,
    Sis

  2. Ying April 21, 2013 at 8:34 AM #

    As someone lnviig with this disease and someone heavily invested in finding funding and treatments, Reading statements like this in the news makes me sick!… “Drug companies do not fund research on Cystic Fibrosis because the disease doesn’t effect enough of the population to create a large enough profit margin.” That means CF research is highly dependant on fundraising such as this.The Cystic Fibrosis Foundation has one of the highest percentages of any non-profit in terms of using raised money towards research and not pouring it into advertising. That’s why CF has not been branded like some other diseases such as breast cancer. The next time these Carleton University Students wake up exhausted from a nasty hang over, barely able to breathe due to drunkenly smoked cigarettes, then maybe, just maybe they can get a feel of what lnviig with this disease is really like.CF aside, isn’t the point of fundraising to help people?

  3. April 24, 2013 at 8:49 PM #

    What an honor to be the mother and a guiding force in the life of my hero and son Jeremy. He had every reason to live a life of despair and emptiness, instead he defied the whole understanding of CF 30 years ago as he does today. Happy Birthday Darling, thanks for being one in a million and having the strength and courage to never let anything stand in your way. Love Mom, You will always be my HERO!

  4. August 20, 2013 at 5:55 PM #

    Somehow stumbled upon you on IG. Amazing story, so glad you shared. You’re a light.

    • August 22, 2013 at 4:31 AM #

      Thank you for your encouragement Janet:) I’d love to help someone if I could, we can talk anytime. 601.467.6959

  5. September 14, 2013 at 9:33 PM #

    Jeremy, I am so grateful to have been in the family when you were born. You have always been a determined young man and as you have grown you are an inspiration. You are amazing and such an example to anyone, not just someone with CF. You are a hero !!

  6. September 1, 2014 at 1:21 AM #

    You are an inspiration, brother! Keep living and loving. I believe in will and the power behind it. I also believe in faith and the collective prayers of all those who love you. You’ve always got a place in my heart.

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