Kate Conklin, who decided to “get busy living,” will be in the Amica Ironman 70.3 Rhode Island, even though she has a rare and painful disease.

The Journal / Carolyn Thornton

One morning about four years ago, Kate Conklin woke up planning to make that day her last.

Diagnosed a year earlier with a rare and extremely painful disorder called erythromelalgia, also known as Mitchell’s disease, the young woman felt she had been robbed of everything.

Once a competitive swimmer, she now could no longer walk because her feet hurt so badly.

Once a CPA, she could no longer work.

Conklin felt helpless and after enduring night after night in sleepless agony, she just couldn’t take it anymore.

“I wrote the suicide note and everything,” she said. “I did not want to scream in bed anymore because I screamed in bed for so long. I just wanted to be dead.”

But Conklin did not kill herself that day.

As she lay in bed, she knew she didn’t really want to die. She just knew that her life couldn’t continue this way.

Somewhere inside, Conklin found a glimmer of hope. Faced with the choice to “get busy living or get busy dying,” she chose to regain control of her life and channel her energy into increasing awareness about erythromelalgia, and letting others suffering with the disorder know that they are not alone and that there is a way to live with the pain.

“I woke up and I just made a decision that I’m going to do this,” said Conklin, 33, who competed in the Cox Sports Marathon in Providence last May and has returned to Rhode Island this weekend to compete in the Amica Ironman 70.3 Rhode Island as a tuneup to next month’s Ford Ironman Louisville. “I’m going to try to help other people. And ever since, that’s helped me. In my mind, this is why I’m here. This is why I have this. That helps me keep going.”

According to the Erythromelalgia Association Web site, this rare disorder — also known as “nerves on fire,” “Man on Fire” and “burning alive” — can affect men and women at any age. Although it is sometimes secondary to various autoimmune, neurologic or blood disorders, in most cases the cause is unknown. Although some treatments have been found to reduce or eliminate the symptoms, a definitive cure has not yet been discovered.

Although Conklin occasionally experienced pain in her feet as a child, she didn’t really begin to suffer from the disorder until she was 28, experiencing her first attack one December night.

“I woke up screaming in pain,” she said. “I thought I was dying.”

Conklin went to the emergency room, but would not learn that she has erythromelalgia until many months and many doctors later. She says a dermatologist at the Mayo Clinic in Scottsdale, Ariz., where she was living at the time, made the diagnosis.

“You’re going to be in pain the rest of your life,” Conklin remembers him telling her. “It’s not going to kill you, but you won’t be able to do anything.”

Conklin likens the pain she experiences to having acid or hot lava poured on her skin.

“It’s extreme burning pain all over your body every second of every day,” she said. “Even your eyes burn, so we’re pretty much burning in this invisible fire all the time, and there’s no cure. There’s no medicine that even touches the pain. The Yale research group is saying that it’s the model of all pain and that if they can cure our disorder, they can cure all pain disorders.”

And so Conklin’s crusade continues. She shares her experiences openly and in great detail on her Web site http://www.kateconklin.blogspot.com, proclaiming: “I have erythromelalgia, but erythromelalgia does not have me!!!!!” and encouraging others with the disorder not to give up.

Conklin, who has since moved to Manhattan and become a certified personal trainer for Sports Club L.A. in Rockefeller Center, also hopes to create more awareness through her marathon and triathlon exploits.

Wearing sports sandals because it is too painful to wear socks and shoes, she completed her first marathon last May in Providence. Her feet left bloodied and blistered, she described the experience as “4:52:50 of pure pain!” but adds that she wouldn’t trade a second of it, saying that quitting simply wasn’t an option.

Drinking in the scenery as she ran, she says she became emotional at times thinking about how none of this would have been possible had she chosen a different path that December morning four years ago.

“Just to be able to participate is huge for us because people with our disorder are in wheelchairs, and the doctor told me I’d never run again or walk again,” said Conklin, who will be the subject of an ESPN documentary later this summer. “It made me teary-eyed to think that I’m actually doing this. Even though it’s excruciating, I’m still doing it, and that makes me happy.

“I have to say I’m happier now than before I was sick,” she added. “I finally found myself. I enjoy things so much more. I enjoy running even though it hurts, and the marathon hurts. I’m happy and I see it as a gift. I had been such an active person (before being diagnosed). I had so much life in me that I want to enjoy it.”

Now it’s on to the triathlon for Conklin, who will take the starting line at Roger Wheeler State Beach in Narragansett along with the more than 1,500 other competitors participating in Sunday’s Amica Ironman 70.3 Rhode Island.

“I am excited about doing the Ironman 70.3 to see where I am in terms of training and racing,” said Conklin, who is using the 1.2-mile swim, 56-mile bike and 13.1-mile run as preparation for when she attempts the full Ironman distance in Kentucky on Aug. 31. “I am also a little nervous about it because I know how much pain it is going to be for me. It’s hard to mentally prepare yourself for excruciating pain for six to seven hours or so. I just have to focus on why I am doing the race, and that helps me deal with the pain. It might be hot, as well, which adds another challenge to the race. But I will do my best and hope to inspire and bring awareness for EM at the same time.”

Just as she was waiting for Kate at the marathon finish line, 92-year-old Helen Conklin of Warwick will again be waiting for her granddaughter when she finishes Sunday’s race in front of the State House.

“It’s pretty emotional, I’ll tell you,” Helen Conklin said. “Because I know what she’s been through and what she goes through. You can’t help but be very proud of her. Four or five years ago, she was hitting her stride and the rug was pulled out from under her when this disorder hit. She went down about as far as you can go.

“But it’s all falling into place now. She’s found something that she’s passionate about, and no matter how badly she’s hurting, she’s bound and determined. And you can’t tell her she can’t do it because she’ll do it.”

cthorn@projo.com