Chiari Warrior – Going Viral

This is the storyof Kayln Blacklock; her life will inspire you – click here:  Chiari Warrior.

Since days ago, a lot has happened.  Her story has been re-blogged and shared on Facebook and Twitter and the interview about her incredible journey received over 2,500 hits.  ABC-TV and FOX News are pitching her story to air on TV.  I’ve nominated her to become a CNN Hero.

Nine (9) months ago she was in a wheelchair from Chiari Malformation, a rare disease where the brain seeps into the spinal chord*.  After two brain surgeries to treat the disease she got cancer.  Today she is not only walking, but ran the Tough Mudder Race 5 days after chemo and is currently training for a bodybuilding competition.  She has three years to live.

She means to live.

This is part II of my interview with her in my car outside Metroflex Gym where we train together on an all women’s bodybuilding team called Mel’s Machines:

“A lot happens in three years.  I didn’t think I would own a gym,”  she laughs.  The smile reaches her eyes and they crinkle.

“How did that happen?”

“I was in a wheelchair, then a walker, then used a cane.  No one would train me, except my now-boyfriend, Chris.  Through diet and exercise I was able to walk again.  The minute I didn’t have to use my cane I was hooked on fitness!  I’m a dream maker.  I go out of my way to make people’s dreams come true.  Chris wanted a gym, so I helped him.”

Their gym is named F.U.E.L. Fitness.  The acronym stands for everything they believe in and the characteristics they live by:  Fortitude. Unity. Effort. Love.   It takes each of these to have a healthy mind and body. Their mission statement: “To help people find the best version of themselves.”

When she’s not doing chemo, raising awareness about Chiari Malformation through the non-profit Chiari Warrior Foundation*, raising her seven-year-old son or working on her bucket list, she is busy running her marketing firm, OSS Consulting.

“How do you have time to do everything!?! Some days I’m lucky to get the kids to school on time.”

“I love what I do.  Also, I have to work.  I was dropped by all insurance companies and have to pay for my own chemo.  It costs $22,000 per month to pay for it.  I make the minimum payments each month.  Every paycheck I make goes to medical bills.”

“How were you dropped?  I thought Obamacare fixed that?”  I’m confused.

“Obamacare fixed pre-existing conditions.  I have two terminal illnesses*, so the insurance companies were able to drop me.  I got a letter from Blue Cross explaining it.”

Now I’m angry.  I shake my head in disbelief.  “Did you consider moving somewhere like Canada where there is socialized healthcare?”

“My ex-husband and I share custody of my son.  I need to be here in Austin for my son. It’s better for him this way.”

“What about Medicaid?  Can you ask churches for help?”

“No one will insure me.  I pay over $600 per month with the Texas Health Risk Pool just for a doctor to look at me.  We joke that it’s the insurance option for the walking dead. ”

She looks out the window for a moment before continuing, her voice softer.  “I don’t feel right asking for money.  Look, I make a good living.  Think about all those people with five kids or a minimum wage job. ”

“And what happens to those people?”

“They die.”

A car pulls alongside us.  A bodybuilder steps out of the car and walks into the gym.  He is the picture of health, muscles bulging.  I glance at Kayln.  She is the picture of health.  Her white fitted jacket is off, exposing her ripped biceps covered in tattoos; each representing a goal she accomplished off her bucket list.  How deceiving a picture can be.

To break the tension I ask a lighter question.  “How do you like training for the Phil Heath Competition?”

“I’ve worn bikinis on the beach before, but nothing like a posing suit.  It’s like butt floss that you have to glue on yourself!”  We both laugh.  “Mel has been great.  When I met her I told her doing a bodybuilding competition was on my bucket list.  I told her about the chemo and that I wouldn’t be able to hold down much food or eat any solids, but she worked with me anyway.  I should probably work harder on my training.”

FYI – we do a team booty camp together on Sundays and I can barely keep up with the girl.  She puts me to shame!

“What do you want to say to people who have just been diagnosed with an illness like Chiari Malformation or cancer?”

“Do your research.  Doctors don’t have time to tell you everything.  Become the expert so you can ask the right questions.  Ask for help.  This was really hard for me to do but finally I broke down and said to my mom, ‘Hey, can you help me clean the toilet I’ve just been puking in all day?’  It was hard.

My boyfriend, Chris, is so helpful.  He loves me and takes care of me when I’m sick.  Mel and the girls from the team are super helpful.  Sometimes you’ll just need a hug.  If you are terminal sometimes you have to say to yourself, ‘This does suck, but you’re not alone.’  Prayer is so helpful.  If you don’t believe in a higher power you can feel very alone and isolated, so you need to surround yourself with a support group.  I talk to God every day, sometimes throughout the day.”

Last October her timeline was overwhelmingly packed.  On October 1 she launched her non-profit, Chiari Warrior Foundation, opened F.U.E.L. Fitness and started chemo.  Five days later she ran the Tough Mudder race.  Since starting the foundation she helped to raise $78,000 and funded three patient surgeries.

“What are you going to do next?”

She sits up abruptly, excited by the possibilities of the question.  “I have a sense of urgency, a need.  People say three years is a long time; it’s not a long time.  I want to get the word out, make Chiari Malformation a household name.  I need to leave a legacy for my son.  No matter what you hold the cards to your life.  You dictate your life.  You are in charge.

I want people who have been diagnosed with a terminal disease to know that a death sentence is a life sentence.  Anyone get walk in the street, get hit by a car and die tomorrow.  When you are terminal you are given a time-frame others don’t have.  You know you have three years to live your life urgently and design the life you want to live.  Embrace it.  It’s ok to have some down moments, just get back up as soon as you can.”

Kayln’s dream is to raise awareness about Chiari Malformation.  Can you help be a dream maker too?  Please consider sharing her story with your friends on Facebook, Twitter and/or your blog.  Let’s make Chiari a household name so doctors and scientists can find a cure.

Click here for more information about the Chiari Warriors Foundation.

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.)
• 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

Thank you,

Lisa

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