A story of hope after a bleak ALS diagnosis

LUBBOCK, TX (KCBD) - Most of us think of ALS as a fatal disease. My cousin, Sharon, died from it 15 years ago. I know there are countless families coping with similar tragedies. But the fact is, no one can explain why some patients outlive all the rest.

The outlook for Joel Harragan looked bleak when we told you his story three years ago.

It's time for an update:

"Shall I tell you what it's like...dying?" That's a heartbreaking line from the movie, "Tuesdays with Morrie".

It's a best-selling book and a movie, the true story of a young sports writer who learned the most from his favorite teacher while that teacher was dying of ALS, or Lou Gehrig's disease.

Joel Harragan, also a former educator diagnosed with ALS, came to this class in Lorenzo to share his life lessons after the class studied that book about Morrie.

In the movie, Morrie says "You know anything about this disease I've got? Lou Gehrig's disease? It melts you like a candle."

In the Lorenzo classroom, Joel tells the students, "Right now, for the most part, it's in my lower torso, my legs."

Joel came to the class after going to Houston for a second opinion, and getting the same diagnosis - ALS.

It's a neurological disorder which causes 'progressive muscle weakness.' The average life expectancy is two to five years.

Joel talked to that class three years ago.

Today, you'll find Joel strumming a guitar and singing his heart out.

He says, "I haven't used a walking stick in months. My leg stopped shrinking. I've stopped losing muscle mass."

So how could that be?

The ALS Association says that five percent of patients will live 20 years.

The current movie, "The Theory of Everything," tells the story of physicist Stephen Hawking, who is paralyzed but still alive today after more than 50 years with ALS.

Another unexplained fact from the ALS website: in a small number of people, the symptoms of ALS have reversed.

Joel says, "I know things are better and I can't explain why. The biggest thing I can say - my attitude changed."

Joel says his diet has also improved, and he takes vitamins and medicine for his tremors. But, two years ago, a childhood friend walked back into his life… and they fell in love.

"Think about it," he says. "How many women would marry somebody they knew had ALS?"

The lady sitting across from him on a piano bench says "It's been good for me, too."

Mary says at first in their relationship, she had to do all the chores and the lifting, but not anymore.

She says, "Now, he can get down and dig holes and use a shovel and do anything any man can do, just not for as long. He gets tired."

Together, Joel and Mary have made their back yard their haven, with beautiful flowers and tomato plants in the alley.

Mary says, "He hasn't gotten worse. He's gotten better."

Joel adds, "There's really no explanation."

There is a boat waiting by the back porch for another kayaking trip because they enjoyed it so much last summer.

But Joel understands the reality or possibility that comes with his diagnosis. He says, "I'm not over it. My right foot turns in. My toe wants to drop. But from what I'm experiencing right now, it's like I've won the lottery."

Mary agrees as she opens a closet door to reveal a cane tucked into the corner.

She says, "We put this sucker in here and don't use it anymore."

Morrie shared the same positive attitude with his former student in the movie, "Tuesdays with Morrie."

He says, "I'm a lucky man. I still got time to learn, time to teach my final course. Not about dying, about living."

That's a lesson Joel and Mary are living every day. As Joel sings and plays the guitar, Mary plays the piano.

They both want to make the best of whatever time they have together.

Mary says, "You think about the future, it's frightening. But you just have to stop and do today. Let's make a memory today and worry about tomorrow tomorrow."

Joel smiles and says, "It wasn't luck that Mary came into my life. God gave me Mary."

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