A story of Michael Bell: A family lets go

April 03, 2011|BY TIFFANY ARNOLD |
  • Michael Bell with his daughter, Mikaylah R. Bell.
Submitted photo

Loved ones filled the hospital room at Meritus Medical Center to say goodbye to Michael Bell, who was on the verge of death.

His long fight with amyotrophic lateral sclerosis (ALS) was nearing an end.

"I didn't know how to feel, how to think, because I'm standing here watching my son die," said his father, Charles Bell Jr., who held his son's hand in the hospital room.

It was a difficult predicament.

The longer Michael Bell lived, the more time family had to spend with him — and the more likely the disease would compromise his remaining organs, preventing him from fulfilling a final wish to be an organ donor. ALS is a degenerative neuromuscular disease. It had already destroyed most of his muscles and had compromised his lungs. He told his family that he didn't want to lose any more organs to the incurable, fatal disease.

He wanted to leave something behind.

A cocktail of anti-anxiety medication flowed through his veins. At Michael Bell's request, doctors removed the machine that had helped him breathe. Michael's brother, Charles Bell III, placed a hand on his head.

"He was breathing on his own for six to seven minutes," his brother, Charles Bell III, said. "And then I just watched his heart beat. The number went down, down, down ... "

Michael Bell, 35, of Hagerstown, died Monday, Feb. 21.

He is survived by his 1-year-old daughter Mikaylah R. Bell, six sisters and one brother. He is also survived by his parents Charles Bell Jr., of Hagerstown, and mother Connie Bell-Winston, who lives in South Carolina.

"He was a good son," said his father Charles Bell Jr., 68, of Hagerstown. "You really had to know Michael, know what a good guy he was. He was my son and I loved him."

Since Michael's death, family and friends have said they've felt compelled to share his story.

"Life is too short," said Candace Ingram, 34, of Hagerstown, who became his full-time, live-in caretaker before he was hospitalized.

Between sobs, she quoted what Michael Bell said to her throughout his ordeal. "Life is too short," she repeated. "But really, that's the way I have to live the rest of my life. I hope people will learn that from me. You can't waste one minute because tomorrow's not guaranteed."

Michael donated his kidneys and liver through the Living Legacy program. Charles Bell III said he was told by representatives from the organization that two men and a woman received his brother's kidneys and liver.

"I think what my brother did — I think he's a super hero," said Charles Bell III.  "As many people as I can tell, I'll tell."

A young man stricken

Michael Bell, a middle child, grew up in Hagerstown and was a graduate of North Hagers-town High School.

On Sundays, Dad raced a 1969 Dodge Coronet at the Mason-Dixon Dragway, east of Hagers-town. It was a family affair.

"Me and my brother would change the tires, get the car ready to race," Charles Bell III said. "Then my dad would race. We would put on the street tires, then drive home."

Michael took to racing more than his brother, his father said. But the racing stopped when Michael got in trouble with the law in the late 1990s and served some time in prison. His father said Michael vowed to start racing again, to do the right thing.

"He stuck to his word," his father said.

In 2002, the Michael and his brother rebuilt their dad's car — dad had blown the motor and stored it in a garage. Michael raced in Maryland, Delaware, Virginia and the Carolinas. His dad said he thinks racing is what kept Michael out of trouble.

But in 2006, something strange happened at the races.

"You could see his muscle twitching in his hand," his brother said. "He had injured it before and we were thinking it was something to do with that."

Eventually, Michael lost the use of his hands, and, later, his arms. "Then it worked down his body, to his legs, until those were rendered useless,"  his brother said.

Michael Bell couldn't drive anymore.

After about a year's worth of tests, it was determined that Michael had ALS

ALS is often referred to as Lou Gehrig's disease, named for Henry Louis Gehrig, a Hall of Fame baseball player for the New York Yankees who died in 1941 due to complications from the illness. The Centers for Disease Control and Prevention estimates that 20,000 to 30,000 people in the United States have ALS. Though the U.S. Food and Drug Administration has approved a drug that slows the progression of ALS, the disease has no cure.

The cause of ALS is unknown.

People with ALS don't lose thier mental capacities. Michael Bell's family and friends said it was as though he were a prisoner, trapped inside his own body.

"To see somebody that you know is still the person you grew up with, yet he just had to lay there, I wouldn't wish it on anybody," Charles Bell III said. "It's terrible."

Michael's muscles continued to deteriorate. He lost the ability to walk, talk and eat. He communicated via a machine that tracked his eye movements. He suffered from two respiratory failures and was put on a ventilator. He was hospitalized thereafter.

"He and I had always talked about what he wanted," Ingram said, "and that what he wanted wasn't to be living on a ventilator. He didn't feel like that was living."

Michael's decision to end his life was hard for Ingram and the family to accept.

"We all were against it," Charles Bell III said.

The family tried to talk him out of the decision — "There's still a few more moments you could spend with your daughter," Charles Bell III said was one of the rationalizations the family tried to use.

But Michael's mind was made up. He was an organ donor, and his liver and kidneys were still in good condition, his family said. He felt he was doing the right thing, ending his life to preserve the lives of others. "He knew he could still help other people," Charles Bell III said.

A gift

The Rev. Richard W. Bower, director of pastoral care at Western Maryland Hospital Center and a chaplain at Meritus Medical Center, got to know Michael Bell throughout his illness.

"When people are watching over their cardiac unit for the next 'blip,' they never say, 'Oh I should have made more money, I should have had a bigger house,'" Bower said. "There are three things people usually talk about: Who loves me, who do I love and what have I done that made my life worthwhile?"

He said there was something unique about Michael.

"He recognized how important it was that a person's life is not measured by what they have or how much power they have or what position they are, but what can they do for others to make others better," Bower said.

Bower, a retired colonel chaplain for the U.S. Army, gave Michael Bell his challenge coin — an individual act of gratitude typically performed amongst military personnel.

Bower's coin is about the size of a 50-cent piece. It doesn't have an official title and, as is the case with all military coins, is not officially distributed by the military.

Bower said he gave Michael Bell the coin as a citation for "valor and Christian love."

Bower said that in his 30 years of military service, he has given the coin to as many as 25 soldiers and veterans. It is the only time he as ever given his coin to a person who had never been in the military.

Bower said he recognized a "warrior spirit" in Michael Bell, according to a letter he wrote to Michael's daughter, explaining why he gave her father the coin.

"That sacrificial serving that others may live, that others may have a better quality of life, that freedom will continue, for freedom is only lasting one generation at a time," Bower said. "When I saw that in him, it was the very first time I had ever seen that warrior spirit in a civilian."

The day Michael Bell died

Physicians were going to use palliative sedation, according to family members.

American Medical Association supports the use of palliative sedation as a last resort for terminally ill patients at the final stages of illness, according to a policy AMA adopted in 2008.

Palliative sedation employs sedative medications to relieve extreme suffering by making the patient unaware and unconscious while the disease takes it course, according to the Journal of American Medical Association.

Palliative sedation is not intended to cause death or shorten life.

In the case of Michael Bell, the date was set for Feb. 21. His brother said the process took two to three hours.

"You really can't conceive the idea of saying goodbye to someone, this is it, today's the day," said Ingram, who was there when Michael Bell died. "Nobody gets that opportunity. How do you digest that in your mind, that this moment is the last moment you have with this person? I was torn."

Charles Bell III remembered Michael asked him whether he would have made the same choice. He eventually accepted the choice, but he didn't fully agree. "I'm on the outside looking in," Charles Bell said. "I really don't understand the pain he was going through. I know it's constant pain."

But that was before Michael was gone. Now, it's harder to accept.

"The finality of it," Charles Bell III said. "Even though he was in the condition he was in, you could still go down there and watch the game, you could go there and pull some races on YouTube, you could still crack a joke.

Just knowing now that's not possible, that's ... ."

Charles Bell III fell silent, leaving the thought incomplete.

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