Some diseases may not be curable, but with a positive, can-do attitude, patients still derive plenty of joy from life.
For some, life may seem to end the moment they’re diagnosed with a terrible disease such as cancer, AIDS, or heart disease. Others, though, have an uncanny ability to buffer negative feelings by keeping life’s tragedies from spoiling the good stuff.
Healthy Living was fortunate to find three such people. Despite enduring Parkinson’s disease, cancer, and multiple sclerosis, they continue to see silver linings rather than give into hopelessness and despair.
They’re living proof that the power of positive attitude helps patients with chronic illness live life rather than merely exist.
Multiple sclerosis = Multiple activities
For Steve Gaines, falling out of his wheelchair from leaning too far forward or trying to maneuver down steps is no big deal.
He just laughs.
“If I’m not bleeding and I’m not hurt, then what else can I really do but laugh about the accident?”
Laughter has been a valuable tool in helping Steve, a resident of The Villages, to successfully navigate life with multiple sclerosis. For him, the disease has become progressively worse since he was diagnosed in 1995.
When he moved to The Villages in 2002, he could still play golf six times a week. Today, he is confined to a wheelchair, has no use of his left arm and left leg, and requires assistance for mundane tasks like taking a shower or entering and exiting a vehicle. But there’s no time for throwing daily self-pity parties. Instead, Steve chooses to be an eternal optimist.
“There’s no reason not to be excited about life,” he says. “I’m happy with each new day, and I have a wonderful caregiver and group of friends.”
The caregiver is his wife, Barbara, and his group of friends comes from the Multiple Sclerosis Village People, a 185-member group designed to support both patients and their caregivers. Steve and Barbara joined the group 13 years ago.
Members enjoy occasional outings that include visiting Orlando theme parks and dining at local restaurants. The benefits of the group are twofold. It allows Steve to forge strong friendships and serves as a reminder that he is not alone in his struggle.
“Those of us in the group are upbeat and try to live our lives the best we can,” he says. “Plus, some people in the group live with daily pain, and I’m fortunate that I have no pain. Why be depressed when there are others worse off than you? It makes me learn how to be more thankful.”
He’s equally thankful for the wealth of opportunities available in The Villages. Each Wednesday is poker night with a group of neighborhood friends, while Fridays are reserved for card games at Laurel Manor Recreation Center.
“Playing cards allows me to get out of the house and be a normal guy,” he says. “There are plenty of things to do here, and if I just sit in the house it’s my own fault.”
Knowing Steve is participating in those activities is comforting to Barbara, his wife of 37 years.
“I don’t have to worry about him not having a good life,” she says. “When he’s playing cards, I can enjoy mah-jongg and scrapbooking. This is an inconvenient disease, but we do our best to work around it.”
Putting Parkinson’s in park
Parkinson’s disease casts a dark shadow, but as a caregiver, Ed Baxter makes it a thin veil.
Ed sees right past the disease that leaves his wife, Anna, with limited mobility and persistent fatigue. His eyes instead penetrate right to her heart, a constant reminder that she’s a fully alive human being.
Life has been a wild ride since Anna was diagnosed in 2003, but the Baxters do not allow the disease to always steer their lives. In fact, the Leesburg couple, who married in 1994, continue to travel, attend Sunday church services, dine out once a month, and go to Southern gospel concerts.
“It’s nice to get out of the house and get away when we’re able to,” Ed says. “We don’t let the disease control our lives all the time. We make sure we can do things that we like doing as a couple. But I always remind her that if and when she doesn’t feel like doing things, we’ll scale back or not do them at all.”
While he maintains an upbeat attitude, Ed does not downplay the reality of his wife’s life-limiting condition. Anna suffers from loss of balance, cognitive dysfunction, and lack of stamina. A “pill alarm” goes off periodically to remind Anna to take one of her eight daily pills.
“The disease is progressive,” Anna says. “Every year there’s something I can no longer do that I could do the year before.”
Fortunately for Anna, traveling is not one of them. In fact, the Baxters spent several days in June seeing the picturesque sites at Colorado’s popular Estes Park. Two months prior to that, they visited both the Ark Encounter and Creation Museum in Kentucky.
“When we were in Kentucky, I called ahead to secure a wheelchair, and I ended up pushing her around the facilities,” Ed says.
One of Anna’s favorite destinations is Siesta Key, where the couple enjoys an annual beach getaway in July. A beach wheelchair with large wheels allows her to soak up some rays.
“Whenever I’m at the beach, I feel like I’m home,” says Anna, a Sumter County native who spent 38 years as a teacher and guidance counselor.
When Anna is not traveling, she finds inner peace by helping others cope with life challenges.
“God is in control and has a purpose for everything,” she says. “I’m always looking for opportunities to encourage and minister people going through something similar. The Lord can use you to do good things even if you’re not 100 percent physically or mentally.”
Gotta have faith
Never give up and never lose hope.
That was the lesson Jim Boliek learned when he watched a dear friend valiantly battle cancer. The friend, Randy Jones, had melanoma and was given six months to live. He survived for five years before succumbing to the disease in 2011.
“Randy never once lost his faith in God,” says Jim, a resident of Fruitland Park. “What a great witness to God he was. I have a short hero list and he’s on it. I told myself then, ‘If I ever come down with a disease, I hope I’m just like Randy was.’”
That opportunity came in November 2017 when Jim was diagnosed with gastrointestinal stromal tumor (GIST), the most common type of sarcoma of the gastrointestinal tract. He would need to muster every bit of faith he could to survive what has been an emotional roller-coaster ride with cancer.
He was misdiagnosed on two occasions—first with non-Hodgkin’s lymphoma and then stomach cancer. Then, a scheduled surgery was halted in the middle of the procedure when the surgeon realized Jim’s tumor was much larger than expected. The operation left him reeling.
“I had very little appetite and lost 25 pounds,” he says. “I couldn’t even get up the stairs in my home without help from my wife, Linda. My energy level was low, and I just wanted to sit in the chair. That was my refuge.”
A second surgery was scheduled at University of Florida Health Shands Hospital in Gainesville. However, it was canceled when oncologists determined he had GIST rather than stomach cancer. That turned out to be a godsend.
“Had I gone through that surgery, I probably would’ve had my stomach and the lower part of my esophagus removed,” he says.
Today, Jim is taking a pill designed to specifically target melanoma. He feels “as close to normal” as he has in many months. And despite the ups and downs of his cancer battle, he has never wavered in his faith. That—and the power of prayer—has helped him get through tough and confusing times.
“I have people in five states praying for me and a wonderful support group that includes my immediate family, church family, and extended family I don’t know,” says Jim, a member of Heritage Community Church in Fruitland Park. “Will I be disappointed if I’m not healed? You better believe it. But will I keep my faith and trust in God? You better believe that, too.”
Jim hopes his cancer battle can positively impact others just as Randy’s battle affected him.
“If I come in contact with 1,000 people and only one reaches out to Jesus Christ as his or her savior, then having cancer was all worth it.”