En español | The caregiver edges closer to her frail loved one, a physically diminished figure of greatness whom she continues to admire, cherish and forever share with the world. Steadfast and selfless, Lonnie Ali has towered in her husband's corner for many long, challenging years. At this moment, a butterfly-shaped cardboard piece designed to enhance fine motor skills gets the best of the man who once stung like a bee, the incomparable Muhammad Ali. Now 72, and in the third decade of a courageous fight against Parkinson's disease, Ali grips the colorful butterfly with a slightly gnarled right hand and tries to aim a string through a hole.
As Ali sits in his motorized brown-leather chair at home in Paradise Valley, Ariz., his legs appear thin but his forearms are smooth, tan and steelworker-hard. So is his resolve. As happened often in the ring, this once-graceful, powerful man refuses to capitulate, no matter the odds. Eventually, with Lonnie's help, he catches the butterfly just right and threads the hole.
"Parkinson's has taken away a lot from this man — a lot that would put people in bed, make them cover their heads and never look up,'' Lonnie explains later. "He has a lot to be depressed about. The adjustment [has been] terrific.
"But I think he is secure in who he is, and about his place in history. That's not to say Parkinson's hasn't changed him — it has. But he still has enough sense of self and dignity that he maintains."
The Ali caregiving story is about love, companionship and devotion. It is the story of a brave, spiritual couple joining hands and going the distance in a difficult fight against an insidious disease. And of a smart, tough, resilient woman serving as the voice, guiding light and conscience for an all-but-silenced superstar athlete and civil rights activist.
It is also about faith.
"We are on this journey for a reason, I know that — whether it was to bring attention to this illness [or] whether it was to save his mortal soul," Lonnie says. "Muhammad is a very spiritual person. Lord knows this has made him more reflective and pensive."
In many ways, minus the Ali family's fame and financial wherewithal, the story line is similar to what millions of caregivers endure every day in America: the guilt and loneliness, joy and exasperation, frustration and anxiety, and the challenge of learning how to accept what Lonnie calls a "new normal."
"The hardest part for any caregiver, whether it is a child, parent or spouse, is the relationship change," Lonnie says. "The relationship changes over time with the illness. Physically, [patients] are not as mobile; they are not able to do things with you like they used to. The medications might affect their cognitive ability. They may not be able to speak as well. … That is where you [transition] from a wife or a husband to a care partner or caregiver."
The biggest potential danger, Lonnie cautions, is that caregivers "must guard against becoming bitter because you feel like your life is being robbed from you. And to not let the person you are caring for become bitter in the sense that they feel guilty — 'I am robbing you of your life.'"
"That just makes [the] depression even worse," she says. "To be honest, I can deal with Parkinson's all day. Depression is scary. It affects everyone differently. Trying to get past that slippery slope, and getting them out of that hole, is not easy."
The death of his mother, and the passing of archrival Joe Frazier in 2011, "really affected Muhammad," Lonnie says. "For some reason, I think Muhammad felt better when both he and Joe had space on this earth. I just didn't want him to get depressed thinking about his own mortality."
It was 50 years ago in February when cocky, young Cassius Clay first defeated Sonny Liston to become heavyweight champion of the world, then announced he was converting to Islam and changing his name to Muhammad Ali. For decades, he was one of the world's most famous and admired figures — not only as a boxer, but also for his stands on racial justice and religious tolerance. But Ali has become increasingly private in recent years as his ability to speak has deteriorated.
On a refreshing spring day, optimism is in the air. Lonnie grants a rare interview at the couple's desert home in an exclusive, gated Phoenix-area subdivision. Two expansive palms and a blooming mesquite tree frame a rectangular pool. Colorful flowers enliven a peaceful setting that includes singing birds and a small fountain.