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Living and learning with death at the door

Kat Tillman

Kat Tillman, 17, attends classes at Central New Mexico Community College. Attending the school was at the top of her list of things to do before she dies. Because she has sudden arrhythmia death syndrome, she could die any minute. (Dean Hanson/Albuquerque Journal)

ALBUQUERQUE, N.M. — Kat Tillman rattles off the names of her friends who died.

Sarah died two years ago. She was 17. Shelby died three years ago. She was 18.

On and on, Kat recites the names and ages of her friends who, like her, were diagnosed with sudden arrhythmia death syndromes, or SADS, an umbrella term for a variety of genetic heart rhythm conditions that can cause sudden death among young, otherwise healthy people.

Kat forged these friendships at Le Bonheur Children’s Hospital in Memphis, Tenn., where she and the others were treated or tested for SADS. Since most of the kids live in different cities – the Tillmans moved from Mississippi to Albuquerque in late 2012 – they stay in touch through Facebook.

“This group of kids bonded so quickly because they live life like everybody ought to, like it’s their last day,” said her mother, Leigh Tillman.

But the group is dwindling.

“They’ve watched each other pass away,” she said.

At 17, Kat is now the oldest in the group. She expects she will be the next to die.

“I can feel it,” she said without trace of pity, bitterness or fear. “It will be soon.”

Leigh Tillman knows it, too. Physicians have told them so. There is no effective treatment, they say. A pacemaker installed when Kat was 15 failed to stop her seizures and her heart arrhythmia. Tillman estimates she has personally had to shock her daughter’s heart back into beating with the use of an automated external defibrillator 12 or 13 times.

Each time takes its toll. The heart muscles weaken. The body tires.

“Kat’s oldest friend died on her 18th birthday,” Tillman said. “That’s reality for her. Kat’s goal is to live one day past her 18th birthday.”

Kat’s birthday is July 30.

So a decision was made to let Kat live the way she wants to for as long as she has left: no more long hospital stays, less medication, no more tests. Take chances, move out of the protective bubble, live, do.

“We look at quality, not quantity here,” said Tillman, a pragmatic woman whose status as a colonel in the Marines keeps her on task and out of tears. “You get to a point where you realize your kid is going to die and how do you want to let them live? So you start letting them do things that are risky, but you decide, OK, let them live for 18 years happily as opposed to 20 sad.”

Kat, a wisp of a girl who favors beanies and an oversized Insane Clown Posse hatchet man sweatshirt, is perpetually weary, always cold because of her low blood pressure and poor circulation. She has brittle bone disease. Every time she passes out, she typically breaks a bone.

She has a bucket list. Last August, her mother fulfilled an item on the list by marrying longtime partner Lani Tillman. Kat also went to Walt Disney World with her father, went to prom last year with her boyfriend at Cibola High School. She went surfing in the Pacific Ocean. She longboards, much to her mother’s chagrin.

Still on her list: riding a Ferris wheel at the State Fair, snowboarding and seeing Carlsbad Caverns.

At the top of the list is her desire to go to college, to walk the graduation line with cap and gown and diploma.

“I’d rather die having knowledge of the world than die not having knowledge,” she said.

But since the first time her heart stopped at age 11, school, like most things, has been complicated. Kat cannot over-exert herself, cannot stress herself. If she feels faint or her heart stops, immediate treatment is required.

“It’s unbelievable what you can and can’t do, what makes her condition worse, what triggers attacks,” said Leigh Tillman, who has a milder, treatable form of SADS, as did her mother before her. “But the biggest drawback to her condition is there is usually no warning. It’s like, ‘I’m fine, and then, boom, I’m not.’ ”

Kat had briefly attended Cibola but ended up finishing her high schooling at home and received her GED. But Tillman was determined to find a college willing to take a chance and take precautions.

Central New Mexico Community College took that chance. In December, Kate Rogers at the CNM Disability Resource Center convened a meeting with staff and faculty to devise a plan to allow Kat to attend spring semester.

“We were told this student had a very scary heart condition and that we would need to work together to keep her safe,” said Kris Roush, Kat’s psychology instructor. “We were told she had a 90 percent chance of dying next year. I was amazed that this is how she chose to spend potentially her last year. How many of our thousands of students take education for granted? I couldn’t wait to meet this amazing soul.”

Kat is on track to earn at least a B in Introduction to Psychology, Roush said. Kat is also doing well in her sociology and studio arts classes. There have been no major health incidents on campus.

“I am so proud of CNM and its staff for stepping up like this,” Roush said. “Mostly, I am so proud of Kat.”

Kat shrugs off the compliment. She’s just living her life, she says.

“I know I’m going to die,” she said. “So I can either stay in bed or not. And sometimes I do stay in bed. I do get scared. Sometimes I think about it too much. It’s always there. But the way I and my group of friends think of death is this: We hurt every day. When you die, you’re not hurting anymore. So when one of us dies, we say, ‘At least they’re not hurting anymore.’ It works.”

Kat is expected to walk the line in cap and gown during CNM’s graduation ceremony May 3, qualifying for that honor because of her GED. She is also signed up for two summer classes at CNM, but both Kat and her mother are not sure she will make it that long.

Kat said she doesn’t think much about what happens after death. She is focused right now on living each day as if it were her last. Because it might be.

“It was such a great life,” her mother said, a tear finally inching its way from her eyes. “It is such a great life.”

UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg. Go to abqjournal.com/letters/new to submit a letter to the editor.

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