“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.
“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.
“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!”
“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.”
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 Kalyn’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 Kalyn 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 Kalyn’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. Kalyn 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
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