A Life-Changing Diagnosis
In 2001, Alan Alderman began noticing a few unusual symptoms. “I started noticing that I was having trouble speaking. My voice was a lot more monotone. I was slurring some words,” Alderman says. “Also, I started having trouble swallowing.”
Alderman tried to shrug off the symptoms for six months, until he finally realized he needed to see his doctor. That one checkup led to dozens of visits with pulmonologists, speech therapists, neurologists, and other specialists over a three-month period.
“It all culminated on one fall afternoon in late September when, after running a few tests, the doctor . . . sat down on the little round stool that they have in their examination rooms, pulled right in front of me, put his hands right on my knees, and said, ‘Alan, I believe that you have ALS.’ . . . When he said [those] words, that changed everything,” Alderman says.
At that moment, the 40-year-old father of three was told he had only two to five years left to live.
“I was in a career that I loved. My wife at the time and I had just bought a brand-new home in South Jordan [Utah] and moved our family from Southern California. My kids were young; they were 9, 8, and 5 at the time. And everything seemed to be going great,” Alderman says. “Here this guy was telling me that I had a disease that was going to rob me of my ability to move, eventually kill me, and that there was nothing that he or any other doctor could do for me. My whole world turned upside down in that one moment.”
For weeks, Alderman wrestled with the diagnosis, his faith, and his Heavenly Father. “I was angry. I was discouraged. I felt hopeless. I felt helpless,” Alderman says. “For months after my diagnosis, I remember pleading with my Father in Heaven, ‘Don't let this be ALS. Let it be something else. Let it be something that they can give me a shot for or a pill.’”
Alderman now recognizes this struggle as an experience shared by humanity—the pleading and seeking to know why, the shrinking from the road ahead. “Even our Savior—the only perfect being who has ever walked the earth, the literal Son of our Father in Heaven—even He was overwhelmed with the physical and emotional challenges. What did He say in Gethsemane? ‘Father remove this cup. Nevertheless thy will be done,’” Alderman says. “I am not comparing myself to my Savior in any stretch of the imagination, but I have said those words plenty of times over the years.”
And through his pleading, praying, and faith, Alderman has come to know that the Lord can bring light and hope even into our darkest challenges: “I was in a dark spot for a while. But then I decided, ‘Alan, it is what it is and you have a choice to make. ALS will probably take your life, but whether or not it destroys your life is up to you.’ I decided it would not destroy my life.”
Defying the Odds
Alderman’s doctor’s prognosis was wrong. Eighteen years later, Alderman is still living a life filled with challenges, the grace of God, and beauty that he could have never imagined before.
“I have this very rare form of ALS, and it is slow-progressing,” Alderman says. “No one in the medical or scientific field can tell you why I am alive right now. But to me, the only reason is that my Father in Heaven still needs me here and there is still some work for me to do.”
In addition to traveling the world raising funds for ALS, Alderman spends his time mentoring and supporting others who have been recently diagnosed with the disease.
“Every day is a gift, and the sooner that we realize that, the better off we will be,” Alderman says. “If everyone in this world lived their life like they had a terminal illness, then this world would be a lot better place. The reality is, we all have a terminal illness, and that terminal illness is called life. . . . When you live with [a terminal illness staring you in the face] every day, I think that you realize what is most important in life and you put more emphasis on that.”
Before being diagnosed with ALS, Alderman had three pillars that sustained him: faith, family, and friends. Now, he has added a fourth “f” to his list: Finding a cure for ALS.
To the families he mentors, Alderman tells them, “ALS is not the end, there are many wonderful experiences in store for them if they will just choose to see them. . . . There's more to life than just living—it's living well, it's helping others, leaving your mark in a positive way whether that mark is just a pin dot on a piece of paper or as big as the whole world. . . . All that you can do is all that you can do, but all you can do is enough—that's the gospel according to Alan.”
This same fortitude, resilience, and optimism is what helped Alderman and his teammates across an ocean.
Finding Joy in the Journey
During those first few weeks on the open ocean, high winds and high seas created 25 to 30-foot waves that would occasionally crash across the boat. Sometimes waves flowing perpendicular to each other would meet near the boat so that when Alderman looked up all he could see was an impenetrable wall of water towering above him. “It is a little terrifying or nerve-wracking in the beginning,” Alderman says. But, with his characteristic optimism, he adds, “One of my favorite things was to feel the boat surfing down the front of that wave and then to also feel the rush when you drop down the back side of the wave. Really fun—better than any rollercoaster that I have been on.”
To help pass the time, the crew often played music, and Alderman loved listening to John Bytheway and other faith-promoting material.
“I was the only LDS person on the boat, so my teammates did not always enjoy listening to them,” Alderman says, noting how he still gets teased about his audio choices. “But they got a little bit of religion, whether they wanted to or not.”
Radioing other boats as well as calling friends and family over the satellite phone once a week and on Christmas also helped break up the monotony. But the best entertainment on the open ocean was nature.
One night the crew caught a mahi-mahi fish that made a delicious feast. Dolphins, sea turtles, and whales breeched near the boat, luminous rainbows stretched above the boat every day, and Alderman says “we always had at least one bird flying above the boat. We started seeing that bird as our guardian angel.” The crew named the bird Jack after Captain Jack Sparrow.
“The nights on the ocean were very, very lonely,” Alderman says. “My favorite part of every day was sunrise. It made me think about how sometimes in life we have those proverbial nights when times are hard and we think that the sun will never come up, but it always does. And when the sun rises, it’s a beautiful new day and a new opportunity to live life and learn and have fun.”
Alderman is all too familiar with those proverbial nights in his life.