Chiari Warrior

Kayln pregnant

Kayln pregnant

“My son was five weeks old when my legs gave out.  We were at the hospital for his five week old well baby check-up when I collapsed in the hospital and dropped my baby on the floor.  My legs gave out and I couldn’t pick up my son.  That was my first sign of  Chiari Malformation.”

My jaw dropped open, a vivid picture in my mind of the baby dropping.  He’s fine – he’s seven years old now.  But my friend, Kalyn Blacklock, is not.  She has Type 2 Chiari Malformation, a rare disease.  Her doctor gave her five years to live; that was two years ago.

Kalyn is a little spitfire, barely five feet tall and 98 pounds soaking wet, and she is on my bodybuilding team.  Tattoos cover her shoulders and arms and she only has a little bit of hair she keeps in a ponytail at the top of her head.  Her laugh is infectious; her personality exudes joy.  We are sitting in the warmth of my car outside the unheated and locked Metroflex Gym, where she will be practicing her poses for her figure competition with our trainer, Melissa (Mel) Merritt.

“What made you want to do a bodybuilding competition?” I asked.

“It’s on my bucket list,” she smiled.  “Five years ago, after I was diagnosed with Chiari, I was in a wheelchair.  Then was able to use a walker.  I wanted to exercise but no one would train me.  That’s when I started working out with my now-boyfriend, Chris.  Through diet and exercise I was able to get from a walker to using a cane to now training for a bodybuilding competition with Mel.  I’ve only been fit for 9 months.  I started last June 7.  If it can make me lose my cane and walk, I believe in the power of exercise!”

“You’ve only been walking for nine months?” I’m shocked.  She looks to be in perfect health, except for the large scar on the back of her head where her hair is barely a centimeter long.

Kayln at F.U.E.L. Fitness

Kayln at F.U.E.L. Fitness

“Chiari is basically when the brain seeps into the spinal chord.*  My tether chord snapped and I was paralyzed from the waist down.*  After collapsing in the hospital it took me five weeks to find a doctor who could diagnose what I had.  The condition is so rare some doctors haven’t even heard of it, and it usually only occurs in young children.  After five weeks of searching I found a neurologist who could treat me.  At the time I was the oldest known living survivor of Chiari Malformation.*  The doctor had only done one surgery on one three-month-old baby but I said, ‘I’ll take ya!’  Two weeks later I went in for brain surgery.”

“What caused this condition?  Is it genetic?  Were you in a car accident or did you experience some major trauma?”

“I had ovarian cancer at age 13.  They think my pregnancy triggered the disease due to the increased hormones.  No one else in my family has this.  I had tunnel vision, memory loss, numbness.  After two brain surgeries my ovarian cancer came back and I had to stop treatment for chiari and do chemo.”  She shrugs her tattooed shoulders and smiles brightly.

I’m awestruck.  “Oh my God!  Some people fall apart at the seams if the lady at Starbucks doesn’t say hello and you have two major illness at the same time and are the most positive person I know.  How is that even possible!?!”

“It’s been a crazy year.  I had a hysterectomy in February, went into remission July 12, got diagnosed with Lymphoma on September 27, started chemo and opened a gym with Chris on October 1 and then ran the Tough Mudder on October 6, five days after chemo.”

My hand is over my mouth now as I shake my head in disbelief.  A truck passes by the road behind us bringing mundane noises and a brief moment to pause in her storytelling.  I can’t even begin to comprehend what this woman has gone through yet how much she has, and continues to accomplish.

Chiari Warriors - Tough Mudder Run

Chiari Warriors – Tough Mudder Run

“Some people get diagnosed with a terminal condition and say, ‘why me?’ I say, ‘why not me?’  I have a great family to lean on and own my own company in addition to the gym.  I have a very large family of choice who encourages and supports me.  The girls on the (bodybuilding) team, my friends.  So many people help.  I guess I have the Napoleon Complex.  I want to conquer the world and I’m not going to let some disease stop me.  My attitude is f*** cancer.  F*** Chiari.  My cancer spread into my bone marrow.  It’s in 70% of my body now.  I’ve been given three years to live from the cancer.  At least they share the same death path and my time isn’t sped up any.  That would have made me sad.  I have things to do.  I want to leave a legacy.”

“What do you want to do?”

Everything.  I have a bucket list with 108 things on it.  I add to it all the time and cross it off and date it when I’m done.  I get a tattoo each time I finish a goal.”

“Oh, that’s why you have so many tattoos!”

Kayln and Chris

Kayln and Chris

“Part of Chiari’s side effects is that my memory keeps fading until eventually I will remember nothing.  Did you ever see the movie Memento?  The main character has short term memory loss and writes on himself to remember things.  I want to remember everything I’m doing, so I get a tattoo to remind myself.  One of my goals was to celebrate New Year’s Eve in Times Square.  I did that and got my wrist tattooed just before the ball dropped.”

Pulling back the sleeve of her white jacket she shows me her wrist.  The tattoo says, “You must be the change you wish to see in the world.”

She wants to visit every beach in the United States.  She wants to ride a motorcycle to the Sturgis rally.   She wants to walk on stage in a bodybuilding competition.  She wants to get into the Guinness Book of World Records for anything.  Each tattoo represents a goal she achieved.  The dragon on her back represents her son.

“And your legacy?  What do you want as your legacy?”

“I want Chiari Malformation to be a household name so more research is done about it and they find a cure.  I set up a non-profit foundation called the Chiari Warriors Foundation.  We launched it in October and we have almost 4,000 likes on Facebook.  We’ve raised $78,000, funded 3 surgeries and educated two hospitals about the condition.  We set up Chiari Warrior teams to raise awareness through extreme sports and people have joined in Cairo, Australia, Singapore, Rio and all over the U.S.  I want awareness to be my legacy to the world.”

Her eyes begin to well up the only moment in our hour long conversation as she reflects on her son.  “I take him to the hospital with me.  He’s very educated about my diseases; it helps him stay brave.  My son tells people, ‘My mom’s dying, but lives life more than anyone I know.'”

“My son is seven years old.  He has never known a time when I wasn’t sick.  I want to leave a legacy for him.  I want him to know that no matter what: you hold the cards to your life.  You dictate your life.  I want him to know no matter what, Mommy never gave up.”

Chiari Warriors

Chiari Warriors

If you would like to learn more about this disease or how to join a mud run team to help raise awareness, click here:  Chiari Warriors Foundation

If you are a blogger reading this, please consider re-blogging; if you are reading this on Facebook, please consider sharing it.  The goal is to get the word out and raise awareness about this disease.

7/7/13 Update from Lisa:

There has been a huge response to this interview, most of them pertaining to Kayln’s positive attitude in dealing with Chiari and cancer.  There have also been comments from people within the Chiari community who wish to clarify some of her statements.  Please keep in mind that Kayln was speaking to me about her illness as one friend to another and not as an expert or a doctor.  That said, it’s important to get accurate information out, so below are some notes/corrections about the condition:

  • Chiari is a chronic condition, but typically not a terminal one.  In Kayln’s case she also has cancer, so that has caused complications.  Each year a few Chiari patients die due to complications from the condition or complications from surgery, but this is a low percent.
  • “Chiari is when the brain is herniated (or squeezed down into) the spinal canal, not spinal cord.  The spinal cord lies within the spinal canal; they are two different structures, one within the other.”  (Source: Sonja Young, Chiari Program Coordinator, Beaumont Hospital Royal Oak, Department of Neurosurgery, under the Medical Direction of Dr. Holly Gilmer, Pediatric Neurosurgeon.)
  • Correction to “my tether snapped and I was paralyzed”.  “The spinal cord is supposed to hang loosely in the spinal canal, attached to nothing, so the person can bend without yanking it.  When the spinal cord is tethered it means that somehow it is attached somewhere along the cord (usually at the bottom end of it,) so when the person bends, the cord can be yanked and stretch, which is painful and damaging.  Spinal cord untethering surgery is where the neurosurgeon frees the spinal cord from being tethered down.  Kayln may have a tethered spinal cord that is being yanked, but when you say it “snapped and was paralyzed” it implies it was severed.  A severed spinal cord causes permanent and irreversible paralysis, which she obviously does not have.  Damage due to tethering can cause temporary paralysis.  (Source: Sonja Young)
  • Correction “at the time I was the oldest known survivor of Chiari Malformation”.  “Perhaps for that one doctor she was the oldest known living survivor of CM, but certainly not within whichever state she lives and certainly not within the USA.”  (Source: Sonja Young)
  • Correction “Part of Chiari’s side effects is that my memory keeps fading until eventually I will remember nothing.”  This quote make it sound like Chiari causes progressive, permanent memory loss like Alzheimer’s Disease.  Unless she has more issues than are mentioned, she will not progressively lose her memory.  One of the symptoms of CM is something called “Chiari Fog” where patients have difficulty with cognitive function, focus and memory, but it is not the same as progressive and permanent memory loss.  (Source: Sonja Young)
  • Money raised for the Chiari Warrior Foundation goes directly to The Chiari Institute (TCI) in Long Island and helps those patients.  For full disclosures, refer to the link to their page (same as in article):  Chiari Warriors Foundation

Lisa ;)

Sheslosingit.net (c) 2013 Lisa Traugott.  All rights reserved.  No portion of this blog, including any text, photographs, and artwork, may be reproduced or copied without written permission.

84 responses to “Chiari Warrior

  1. Pingback: Chiari Warrior « The Mommaleh·

  2. What an inspiration! I was moved to tears by her story and pray that she will beat the odds and live a long and healthy life. It puts the small things in perspective! Time to put my big girl panties on and stop making excuses and leave a Legacy! Best wishes to Kayln!

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  4. Reblogged this on Happy, Healthy, Clean… this is me and commented:
    Oh my goodness – this is one of the most mind blowing stories I have ever read. Pass it forward, raise awareness. Tonight I’m going for a run. Training for a mud race? If she can do it, the only thing stopping me is myself!

  5. I have had the pleasure of knowing this amazing women for the last 6 yrs . Infact i was her sons preschool teacher its not hard to fall inlove with him he was exactly like his mom a leader . Kalyn taught me so much as we begin to get close shes a wonderful person amazinf mom and the kind of person after a bad day you always want to be around .
    her attitude about life sets a standard far beyond

  6. Reblogged this on 43fitness and commented:
    I just had to share this inspiring story from one of my favorite blogs, She’s Losing It! I’d never heard of this disease and am astounded by this woman’s courage and strength.

  7. What an amazing story. A true testament that you can allow yourself to wallow in the bad things life throws at you – or you can fully live your life in spite of them. She is such an inspiration (and GORGEOUS, by the way)!

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  10. I shared your story on my Facebook page. Turned out my neighbor saw your story, and shared with me that her sister has this condition, too. Thank you for putting the word out, and opening our eyes. You’re truly inspirational! ~Maria

  11. That’s so crazy, I can’t believe that she eventually will lose her long term memory. I’m also glad she’s found someone who will stand by her through thick and thin. Amazing story, mostly because it’s real.

  12. Inspiring success story indeed. And the disease is quite fascinating, increasing how incredible she got pass it and then became a bodybuilder. I guess staying healthy really is not just for the body, but also for the mind, spirit and other characteristics as wrll. Very motovating. Thanks for linking.

  13. Agreed. Disease has many negative aspects, but it somehow frees us from the social constructs that hold us back. The freedom you’ve found has enabled you to achieve so much success. I hope to follow in your footsteps as I’ve gone a bit soft since December. Thanks for the inspiration.

  14. Reblogged this on Lifting My Spirits and commented:
    I’m sure this woman would trade “inspiring” for “old” in a heartbeat. I’m not going to use that word. I’m going to say that my life is changed because I read her story. I am PISSED off that this is her reality, but humbled that she is choosing to live as a warrior when I get in a snit about – well hell – about anything because nothing that I worry about compares. God bless you for sharing Kalyn’s story.

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  17. I have Chiari, Syringomyelia (caused by the Chiari – it’s in my cervical spinal cord – it’s a pocket of brain fluid that the Chiari blockage forced into my spinal cord causing horrendous damage and every time it drains and fills back up, it causes more pain and more damage.), Reactive Hypoglycemia and was just diagnosed with all 18 points of Fibromyalgia. I know the road Kayln is walking. I’ve had the decompression surgery in Oct 2004 – I’m a Zipperhead, too. I’ve been told I’d be dead by 47. I turn 47 in May. I do not have cancer, but due to being in a family with cancer all over the place (both sides have breast, ovarian, lung and brain cancer), I’m told it’s a “when” not an “if” in terms of possibilities (though I don’t know how they can say that without tests).

    I’ve had 13 major surgeries and yet after each time, I stand up and put one foot in front of the other and I keep walking. Whether I have to use my cane or not, I keep walking. I can’t give up. I’m married, I have a 10yr old son and I have a mission to just keep going til my time is up – on God’s say, not some dr.

    Kalyn has inspired me. Because of the condition of my spinal cord from the Syringomyelia, I can’t lift. I haven’t been able to life my son since he was 18 months old. We learn different ways to live. Kalyn’s attitude is something I needed to read about. To just make a plan and do it. I’ve lost 130 lbs (though I had gastric bypass because of my restrictions), and I’m trying get to a place where the Fibro stops winning battles where I can get on the recumbent bike.

    All this to say, I’m bookmarking your blog. I’m so thankful that you are open about sharing your friend having Chiari and raising awareness. I know that I’ve been really open all over the web about it and the Syrinx because they are so rare. Mine wasn’t discovered til I was 38 – after a life time of memory loss, excruciating pain, falling down, etc. You know the routine of it, Kayln explained it well. They can’t guarantee you’ll get better after having the surgery, but from the Chiari standpoint you won’t get worse. But due to the Syrinx (the pocket of brain fluid INSIDE my spinal cord wreaking havoc) I am only getting worse. But I’m fighting.

    And now I have another example to be encouraged by – and to encourage if needed. I’m Jen, Wife, Mom, Artist, Nutcase, and oh yeah, I have 4 diseases – 2 of them rare, all of them excruciatingly painful. But I don’t give up. If Kalyn needs encouragement or has questions, please don’t hesitate to give her my email : JenAllen516@gmail.com.

    One foot in front of the other….

    PS: http://www.asap.org is a good presence on the web to learn about Chiari and Syringomyelia.

    • Jen,
      I commend you for going through everything you are and still walking and taking it one day at a time. You are a success story. Congratulations on taking measures to get yourself healthy. Thank you for sharing the link and I will forward the message on to Kayln.

      God bless,
      Lisa

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  20. I have Chiari II also, was decompressed in 1992 and at that time was told I was the oldest person in my area with it. I have many other diseases, some rare some not, I am a registered nurse but had to file for disability 2 years ago due to increased symptoms and my body failing on me, I was too unpredictable to have on the work schedule…
    I am a wife and mother and grandmother and have a daughter and a grandson with this dreadful condition as well! It is not fun watching them go through surgeries, headaches, balance issues etc. and blaming myself for giving this to them…But, I refuse to give up as well. There is too much work to be done! Over half the doctors I met have never heard of this, or said they had a few paragraphs on it in med school because is it rare and they would never encounter it, so they didn’t waste time on it! Thank you so much for helping us to raise awareness. The site I refer most to is conquerchiari.org There is a wealth of accurate information, as well as research information, and ways of contacting other people in your area for support. They will have a walk in September called the conquer chiari walk across America, we all walk at the same time on the same day for the same purpose, to raise money for research as well as raising awareness. I think we had participants in more than 40 states this last year. I didn’t get to do it, my grandson was having his second decompression and I was at the hospital with him. Also, there is a walk around the country in June called Unite at Night that is another way of raising funds and meeting other people who understand exactly what we are going through.
    Tell Kalyn she can contact me also if she ever just needs someone to listen that knows, really knows, what it feels like to be where she is!

    • I’m so glad you wrote this. I’m sorry that your family has to struggle through this disease. I will pass your information on to Kayln. That walk sounds very interesting and perhaps we can join.

      Thank you again,
      Lisa

  21. Hello! I found this blog by chance while searching for a Chiari Survivor Quote for a business card. This was a gift from God more than a coincidence. Kalyn Blacklock is a model to follow. How is she doing ? I can pretty much predict her Chiari symptoms. I am sorry we are meeting this way.
    My name is Maria. After years of suffering different neurological, gastro, and other conditions I was finally diagnosed with congenital Arnold Chiari Malformation II and Syringomyelia at age 38 on April 2002. I was informed that my syrinx ran from C2-C5 and that it was crowding the spinal cord to the point that any sudden movement could make it making me a quadriplegic from he neck down. After several second opinions, On Aug. 2002 it was decided that I needed to undergo a decompression, laminectomy, duraplasty and craniectomy surgery. The outcome of these interventions not only caused my chronic migraines to intensified but it also opened up a Pandora’s box of unimaginable and uncontrollable pains throughout my entire body especially the left side. Physical therapy and other treatments did not alleviate my symptoms which now included GERD, insomnia, mood swings, chronic constipation and a lieu of other symptoms that are part of Chiari and Syringomyelia like tingling, burning, stabbing, vertigo, change in eyesight, unable to sit, stand, lay down for no longer than 10 minutes at a time, voice change, chronic fatigue syndrome, osteoarthritis, poor teeth health, allergy to adhesive tape, restless leg syndrome, chronic inflammation of upper and lower extremities, swolleness of right upper side of the stomach, constant nausea, extreme thirst, dry mouth, rosacea, teary eyes, among many other symptoms. Due to all the above, I was referred to different specialists that prescribed heavy doses of narcotics, meds to control the body inflammation, temper swings, insomnia, urinary and constipation problems. At one time, I was taking over 20 pills a day, seven days a week. I was a zombie falling asleep while I ate or while trying to have an intelligent conversation. Sometimes I slept for over 18 hours a day. It did not matter where I was. I could be at a doctor’s appointment and I could fall asleep while explaining how I felt.
    The short term disability turned into long term disability and then they decided I was disabled and unable to drive due to the syrinx, lack of neck movement and the many meds I was in.
    Before the year was out, I was having surgery again. On June 2003 they rolled me into surgery to implant a VP shunt on my cervical spine. Did I mention that on the first and second surgery I had to have blood transfusions and that they placed a pic line through my heart? I suffer too from severe brain fog. Two weeks after being released from my second surgery, I woke up with a huge lump on the outside of my lungs. I looked like the Hunchback of Notre Dame. I was rushed to the ER where they drained over a gallon of spinal fluid that was leaking into both lungs. They rushed me to surgery where they performed an emergency surgery to extend the VP shunt. I spent another month hospitalized where they continued to drain both lungs while they pumped me with heavy narcotics, antibiotics and many other meds including countless of breathing treatments. I was having out of body experiences.
    I could not believe how my life had changed so drastically and so quickly. I worried about my teenage daughter who was a senior in high school. I worried about my elderly parents who had just sold their business-a small pop/mom corner grocery store. I had just graduated from college after taking a sixteen year old sabbatical. I had to give back the scholarships I had earned to continue with my higher education.
    I used to read often but now I could no longer enjoy it because I could not concentrate either because of the chronic migraines, entire body spasms and pains, insomnia, depression, etc. For a long time I had dreamt that both my daughter and I would go to the university together. She would lived in campus and attend classes the entire day and I would go to classes after work. I also dreamt that we would meet for dinner and she would tell me about her things and I would tell her about mine. In those dreams nobody was ever sick. I had also dreamt of retiring from my job in the commercial lines underwriting department at Fireman’s Fund Insurance Company and that my daughter would be hired right before I retired. This dream was not meant to be either.
    When I became disabled, my parents had to start working again. One as a butcher at Publix and the other one in the maintenance department at a local elementary school. Life continued for everyone while mine remained the same. I started losing “friends” since I could not attend the parties, get togethers, vacations, impromptu get togethers. Only a handful of true friends and family members have stayed true throughout this journey. They have been there just like my family has. They have tried to keep away all those stressful experiences, situations and decisions. They are always thinking of ways to make me comfortable, pain and stress free. I do not know where I would be without them. My daughter returned her college scholarships and left college after two years to take care of me full time after I was diagnosed with Fibromyalgia. She drives me to all my appointments and comes with me to speak to the doctors and nurses. She keeps tracks of all the medications I take, at what time and their doses. She also keeps track of all my doctors, therapies and procedures appointments.
    When I decided to stop communicating with American Syringomyelia Alliance Project’s digest after two years of daily participation, she recognized I needed to communicate with similar people locally. She then found a Chiari support group in town and signed me up for their first meeting. From there she also found another group that had been conducting for three years an annual rally at a local park where they had been raising awareness about Chiari and raising funds for Conquer Chiari education and research for a cure projects. She not only signed up our family but she also got some of our friends and the people from our support group to join as well. We just celebrated this past September 21, 2013 our 6th Annual Tampa Bay, Florida Conquer Chiari Walk Across America at Al Lopez Park where we had over 450 participants and numerous corporate and private sponsors who donated money, food and items for a raffle. All this was possible due to the hard work and diligence of our Chiari organizers Serenity Alfifi Harper and Brittany Riggs who not only organize and direct the walk but who also run our local support group after the original support group organizer left town.
    Due to the pain and the inability to control my body temperature, I had to leave this year’s celebration while walking with Team Maria’s Angels. Thanks to a police officer that was checking on the walkers, I was able to return to our Pavillion on his patrol car and thus avoiding getting hurt. Even though I was disappointed for having to leave the celebration early, I was happy with myself because the year before I had to leave the celebration right after arriving in the parking lot due to the same symptoms.
    We are very proud that our support group has grown from about four or five participants to some twenty plus participants in just three years. The same goes for our annual fundraising which keeps growing each year in leaps and bounds. This is also happening with the other nationwide groups participating in the same campaign.
    We feel grateful and fortunate that not only our City of Tampa’s Major Bob Buckhorn has proclaimed September as Chiari Malformation Awareness Month but also our Florida State Governor Rick Scott has cited September as Chiari Awareness Month.
    Our goal is to be able to make September a Chiari National Observance Month with the help of our local, national and international coverage of newspaper, radio, television, cable and web coverage.
    I will not allowing my health to stop me from raising awareness for our cause. We are in desperate need of money to fund the cure projects for not only for Chiari, Syringomyelia, Fibromyalgia but also other related neurological conditions. Thanks to this blog and to the Chiarians and non Chiarians reading this blog we are spreading awareness and teaching others about our plight.
    If you would like to learn more about Arnold Chiari Malformation and Syringomyelia, please join us at http://www.conquerchiari.org.
    If you live in the Tampa Bay, Florida area and you are considering joining a ACM/SM support group come visit us in our Facebook support group “Chiari Friends Supporting Each Other!”. We meet every first Saturday of the month at Mimi’s Cafe in Brandon, Florida. Mark your calendar for next year’s Conquer Chiari Walk Across America. It will fall on September 20, 2014. Wear anything purple every Friday in honor of all of us living with Chiari and in honor of the Angels that have passed on while waiting for a cure. Each September also remember to decorate your Facebook/Pinterest/Blog/Twitter status page with a Chiari Awareness Logo.
    We thank beautiful Kalyn for this opportunity to learn about her story and for allowing us to reach others as well. I pray to God that her cancer disappears and that her Chiari, Fibromyalgia, brain fog along with her other symptoms also disappears as she wins each day’s challenges with the love of her son and her Chiari Warriors.

    • Hi Maria,
      It’s heartbreaking to hear all that you have gone through. It’s inspiring to hear that you have taken charge and are participating in activities to raise awareness. Good for you and good luck to you! Thank you for sharing your story.

      Lisa

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