‘There is life on life support’

‘There is life on life support’
Matt White won’t let Lou Gehrig’s Disease deny him of his passion for fishing on his 23-foot boat.
BY SUSAN COCKING
scocking@MiamiHerald.com


Matt White, with wife, Shartrina, uses a fiber-optic laser module attached to his sunglasses that engages the electric reel on his spinning rod when he blinks.CAPE HAZE — Matt White can neither breathe nor eat on his own. His air comes from a ventilator and food through a tube in his stomach. He can’t swallow, so his wife, Shartrina, puts a suction tube in his mouth every couple of minutes.

White, a former golfer (9 handicap) and college track star, no longer can move his arms, hands, fingers or toes. His speech is slow and garbled, so Shartrina translates.

But White — diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s Disease seven years ago — goes fishing on his 23-foot boat. He attends the theater and sporting events, and reads and writes. He and Shartrina, both 40, recently celebrated their first anniversary.

White insists it’s great to be alive.

”There is life on life support,” White said, with Shartrina translating. “I’ve caught everything but a tarpon and a shark.”

The key to serenity, White said — when you can’t scratch an itch, hug your wife or attend to your own personal hygiene — is to focus on the things you can do.

”I make a point not to miss things I gave up,” he said. “I just had to deal with what I could do and forget about what I couldn’t do.”

Since retiring to southwest Florida from Indianapolis in 2004, White spends a lot of time fishing in Charlotte Harbor and on the dock behind his five-bedroom Cape Haze home, with the help of Shartrina and neighbor Richard Leydon.

The dock is equipped with a personal watercraft davit that lowers White and his 600-pound wheelchair onto the wide-open deck of his Carolina Skiff. The boat manufacturer modified the console and transom to accommodate the wheelchair and the batteries and spare parts for his ventilator and suction machine.

On board are the fisherman’s usual hodgepodge of rods, reels and tackle boxes. A livewell in the transom holds shrimp, crabs and pinfish.

REAL COOL REEL

Because White cannot use his hands, he came up with an alternative for reeling in fish — a fiber-optic laser module attached to his sunglasses that engages the electric reel on his seven-foot spinning rod when he blinks. The rod rests in a holder built into his wheelchair.

”He used to move two fingers, so we could put a switch to that, but he lost that last week,” Shartrina said.

On an outing last week in Charlotte Harbor, Leydon motored the skiff out to Cayo Palau and anchored in the shallows. Shartrina baited White’s hook with a live shrimp and cast it. The fishing line had a Styrofoam bobber so White could see the strike.

Less than a minute after Shartrina cast, the bobber disappeared beneath the surface. White blinked to engage the reel and brought a struggling catfish estimated at 10 pounds to boatside. Leyden carefully removed the hook and released the fish.

”How many paralyzed people have caught a catfish?” White said.

He reeled in a couple more that day, along with a small spotted sea trout. An attempt at tarpon and snook near an old railway bridge was unsuccessful. But White insisted he has caught snook, redfish and kingfish on previous trips.

”Matt has taught me a lot about fishing,” Shartrina said.

The couple first met on a blind date when they were 15 and living outside Indianapolis. After high school, they went their separate ways — Matt to Butler University in Indianapolis, where he majored in radio and television; Shartrina to Purdue for a degree in education.

White graduated in 1989 and became general sales manager for an Indianapolis radio station. His income enabled him to join a country club and pursue a lifelong passion for golf. He partied with his college fraternity brothers and followed Pacers basketball.

About eight years ago, White noticed weakness in his hands. His golf game went from a 9 handicap to a 15. He ran a minimarathon in Indianapolis and felt ”wiped out” afterward.

His uncle, Dr. Marv Eastlund, noticed the problem and encouraged him to see a neurologist. In 2000, the diagnosis came: Lou Gehrig’s disease, an incurable disorder affecting the nervous system that’s usually fatal within two to five years.

White’s response: total shock, followed by a plan to go on a worldwide golfing odyssey with his closest friends while he could still swing a club.

They played St. Andrews, Pebble Beach, and even Augusta National.

”I was able to say goodbye to golf in a really nice way,” White said.

MOVING TO FLORIDA

As the disease progressed, White was forced to quit his radio job. He relocated to southwest Florida to be near his parents. Soon he was confined to a wheelchair with a feeding tube.

”He really planned to come down here to die,” Shartrina said.

Three years ago, during a routine hospital visit, physicians made a mistake while inserting White’s feeding tube and he stopped breathing. He was put on a ventilator — against his wishes. But during six months of recuperation at home, he took up fishing from his backyard dock and got reacquainted after 20 years with Shartrina, who was director of educational programs at Chicago’s Rush Neuro-Behavioral Center.

Shartrina traveled to Naples on business, and the friend who introduced her to White in high school suggested she visit him. Romance blossomed and the couple married in May 2006. They share their home with White’s parents and frequent out-of-town guests — mostly White’s fraternity brothers and their families.

Besides fishing, White spends his days writing on his computer — equipped with a laser pointer — and raising money through his Matt White Cure ALS Foundation (www.cureALS.org). He said he has raised about $400,000.

On the introduction to his website, he writes: “By sharing the events of my life and my daily struggle to live with ALS, you will learn how I do it, see the fun and interesting things someone in a wheelchair and on life support can do, and maybe you’ll find a way to try or do something you’ve never thought possible.”

Oh yeah — White’s other avocation? Inspiring people.

8 Responses to “‘There is life on life support’”

  1. Tammy Says:

    A very close family friend was diagnosed with ALS a couple of years ago, he lives in Whiteland, Indiana. He is more like a family member, an uncle to my children and a brother to my husband and I. Anyway, he had been insistant on not going on any kind of life support until recently. He is getting more and more immobile, has every reason to be angry, but he still cracks jokes and smiles and inspires me every time I think about him. He has recently decided that he wants to live as long as he possibly can, he has a 16 year old daughter and a 13 year old son. I was upset at first, because I didn’t want him to suffer. One look in his eyes and his words “I would like to see my kids grow” was all it took to convince me that whatever he wants he needs to get. Thank you for helping me realize that our friend will be able to live to the fullest way he possibly can even if he is on life support. I can’t tell you how it humbles me to know him and to read about you, it makes me realize that life is precious no matter what. Problems that we think are life just horrible really aren’t anything at all, and that I need to enjoy every minute God gives me on this earth!!! Thank you so much!

  2. Lily Marrujo Says:

    Hi Mr. White, I’m very inspired by you!
    Well we just found out that my uncle has als just 2 weeks ago he is in his early forty’s and we are completely just shocked that he is going through this now , because he lost his 5 year old son in a car accident several years ago. Is there anything out there that might help? I’m not talking about a cure , just natural supplements ? You are Awesome! Thank you!

  3. Areruncoofe Says:

    Thanks for the news!!

  4. Chuck Hummer Says:

    Matt is amazing to this ALS patient. I was diagnosed in 2004 and moved to our home in Florida, just like Matt, getting ready to die. I am much luckier than him though, while I can no longer speak or walk, I can still use my arms and hands. But unlike Matt I have a hard time accepting the progressive loss of functions. Of course I am almost twice his age so I suppose I should be grateful that I have already lived a good, interesting and productive life, and I am. I hope that someday soon Matt’s courage and positive outlook, or at least a portion of it, comes to me. Thanks for the article, maybe more folk will become aware of the “orphan” disease.

  5. Kent Brower Says:

    What a positive inspiring out look on life. I am amazed at your attitude, and your drive to keep on keeping on! Your precious wife and your family have been so helpful and supportive in your care. I am so excited to see you able to attend the game in Indy. Go Matt!

  6. Max Dziabis Says:

    You are awesome, Matt! I hope to see you again soon.
    Go Bulldogs!

  7. Belin Jenkins Says:

    It’s been so long since I’ve seen you Matt. Patti has kept me in the loop with everything and I have to say that I am SO proud to know you! You really are an inspiration!

    Hugs
    Belin
    (Patti’s lil sis)

  8. Matt White, Still Going For It » Radio Indiana Says:

    […] about since being paralyzed included being escorted for strolls around his neighborhood… and even fishing in the Gulf of Mexico, joking all the while he looked like something from the movie “Weekend At […]


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