Men and women stood in a circle and held hands Saturday as they prayed to open the monthly meeting of the Sickle Cell Support Group.

"Bless everybody that's here and their parents," said member Mary Medaries, who has an adult daughter with the disease. "Bless the patients."

The group brings together patients and families of patients from around the area, who gathered on folding metal chairs in a room at 2600 West Muhammad Ali Blvd. There are about 50 members, but many don't attend all the meetings.

Carl and Valicia Starks told me they try to go whenever they can, but their plans are often upended by the unpredictable nature of their son Terrell's illness. Terrell had a difficult time this week, Valicia said, and they ultimately weren't able to make it to this meeting.

But the others who were there said they draw comfort, and get needed information through the group. They share stories, commiserate and hear from speakers on issues such as disabilities in school.

"It's really a listening session and an info session," said Stacy Sowell, president of the group.

Sowell and Medaries said the group is like a family. Members call each other when a patient is hospitalized, send cards, offer words of encouragement or advice. Medaries said she has tried to offer support to Valicia in recent weeks, as her son struggles through the last stages of the disease.

Saturday's meeting featured two speakers -- on disabilities in schools and on protecting the rights of the disabled. But much of the discussion among members focused on their desire for better care for adult sickle cell patients. Several people pointed out that medical professionals often view sickle cell patients as drug-seekers because they go to various doctors to find the one best at helping them deal with their pain. Medical professionals have admitted to me that this misconception is common among their ranks.

Members also said they'd love to see a doctor in the Louisville area start a center for adult sickle cell patients -- or even just devote all their time to these patients and become the local expert.

And even beyond the medical community, they said, the disease is something everyone needs to care about.

(Photo: Leslie Jones, right, a senior staff attorney with Protection & Advocacy in Frankfort, speaks during a meeting of the Sickle Cell Support Group in the West End of Louisville.
(By Sam Upshaw Jr., The Courier-Journal)
Mar. 20, 2010)

Terrell has told us a couple of times how he gets exasperated by people who don't appreciate or take advantage of the opportunities they have.

During one visit, he recalled a high school classmate who decided to get a GED instead of graduating with the class "because it was easier." Terrell's voice rose with emotion as he remembered what he thought at the time: What's stopping you from graduating? You slammed a door that's open to you.

For Terrell and Dominique, reaching the milestones of youth required persisting through pain. So everything was much harder for them than for so many others blessed with good health.

For Terrell, graduating high school was a goal that spurred him on -- a light shining past the pain. He pushed his body almost beyond its limits to reach that goal.

"I got my diploma," he said, "but instead of partying with everybody, I went to the ER the next day."

In the first video we shot of the Starks family, they recalled Dominique, who died of sickle cell disease five years ago today at only 17 years old.

Valicia talked about holding her daughter until her grip grew weak and she slipped away. Valicia remembers the exact minute -- 3:31 a.m.

"I miss my Dominique a lot," Valicia said, her voice breaking with emotion.

Valicia shared with me a poem she wrote as she sat beside her daughter's hospital bed in 2003. Valicia traced her hand and wrote, in part: I am your hands. My hands will hold you up. The touch of my hands will soothe your pain, my hands will guide you, dress you and feed you. I just wish my hands would heal you...

Dominique also wrote a poem to her mother that year.

Mom
She's my heart
She's my soul
She's the glue that keeps me whole
She's my eyes that let me see.
She's my spine that keeps me alive.
She's my skin that keeps me in.
She's my queen, my everything.
She's my life...my entire life.
For she's my mother.
My dear mother.
There will be no other...
My beloved mother.

When I visited the Starks family this past weekend, Valicia told me she doesn't want people to read her family's story and feel sad or sorry for them.

Instead, she wants them to learn from her family's experiences -- about sickle cell disease and about making the most of "a horrible situation."

"I don't want people to look at our story as a tragedy," she said. In many ways, she said, it's about adapting to anything and somehow finding joy -- a lesson her children have taught her many times over.

Although some readers have said they were saddened by the family's story, almost everyone has told me they were also inspired by the way the family is coping, finding strength and drawing close every day.

Terrell Starks laughed and reminisced with his family Sunday as he munched on his dad's famous nut pancakes. But eventually, the simple acts of eating, talking and breathing exhausted him, and he laid his head on a pillow on his mother's lap.

Terrell, his parents and his brother Cortez gathered at General Butler State Resort Park in Carrollton, Ky. for what they consider their last trip as a foursome. They rented a cottage on the Kentucky River, where Terrell's dad Carl could fish. And while Terrell mostly stayed inside, he had a perfect view of the river, the woods and the cloudless, deep blue sky.

The family didn't dwell on the future; they just spent time together talking, laughing, watching movies and playing dominoes. But Terrell's mother Valicia couldn't ignore the non-verbal cues that her son was in pain, such as the way he brought his knees up to his chest while waking up. Valicia has also noticed how a certain pain medication isn't working so well lately at relaxing him and helping him breathe more comfortably.

But Terrell was doing his best to stay awake and engaged despite the pain.

"He wanted to do this so bad," Valicia told me. "He said, 'This is it. This is the last trip.' ...He is really pushing himself. "

As Terrell lay on the couch looking out at the river, there was a sense peace in his eyes. "It's good," he said. "We found a really great place."

"Couldn't have worked out better," Carl added.

A little later, Cortez helped Terrell get off the couch and led him back into his bed to sleep.

(Photo by Sam Upshaw, Jr.)

Pain is a constant part of Terrell's life, and sometimes that pain can be excruciating.

During a recent visit to his home, Terrell told me that on the previous day, his pain was a "10" on a scale of 0-10. On such days, he said, "I try to distract myself from it." If he can't, he curls into a fetal position, which seems to help and lets him drift off to sleep.

Doctors and nurses have told me that people generally underestimate the pain associated with sickle cell disease. One nurse said that some sickle cell patients manage to hold down jobs and raise families while suffering from pain that would send healthy people to bed.

But no one can function normally with level 10 pain. Patient education literature from the Mayo Clinic describes "0" as "no pain," "5" as "moderate pain" and "10" as "worst possible pain" on an intensity scale. Mayo experts suggest that patients describe their pain to health care providers. Is it stinging, penetrating, dull, throbbing or achy? Such descriptions can help doctors prescribe medications or suggest other pain management techniques such as deep breathing, visualization or prayer.

Terrell, who has suffered the pain of sickle cell disease for most of his life, has gotten help from doctors and nurses in dealing with it. But he's also learned to push through it much of the time and just keep living.

Terrell Starks told me that his own struggle has given him empathy for others as they deal with their own challenges.

"Never make light of another one's problems," he told me recently.

I've been thinking a lot about those words. It's often difficult to know how well people are able to cope with hardships, even those much less serious than what the Starks are facing. Some people have better coping skills or the sorts of personalities that help them rise to whatever challenges come their way. But others struggle mightily.

Terrell's words reminded me that we need to have compassion for everyone.

As for the Starks, they have extraordinary coping skills. They are able to laugh and maintain perspective through pain that would break most other people. And I get the sense that they didn't know this until sickle cell disease forced them to cope with losing one child and facing the loss of another.

"You never know what you can deal with until you deal with it," Carl said. "This is a life lesson -- that's what I call it -- a life lesson."

I keep getting comments from readers about how the Starks family's story -- and the overall package of sickle cell stories we ran a little over a week ago -- opened eyes about a disease some people knew little or nothing about.

A few people have told me that they knew the disease existed, but didn't know it could be disabling or deadly.

In the interest of opening more eyes, I thought I'd share a great list I found on the Web showing 10 things people should know about sickle cell disease.