Teen shares pain of losing dad to ALS
It began in autumn 2016 with a slight slurring of his speech. “Fishing” became “fishin’,” “going” became “goin’.” Nothing big, but enough that Sandy Campbell thought her husband, Lance, was just getting lazy with his enunciation.
Within a few months, though, other signs of trouble arose. Lance developed a limp, then foot drop. Numbness in a thumb. His health rapidly deteriorated, including loss of speech and near-total loss of movement, until his death April 8, 2018. The strapping former wrestler and longtime coach had withered to just 90 pounds.
The couple’s 12-year-old son, Daniel, shared his painful observations of his dad’s declining health in a poem titled “ALS.” As in amyotrophic lateral sclerosis. As in Lou Gehrig’s disease. As in the illness that in barely a year of being diagnosed (April 5, 2017) had killed Lance Campbell, a history teacher at the alternative-education East Stanislaus High School in the Oakdale Joint Unified School District.
“I saw my father lose his ability to eat/I saw him lose his ability to speak,” Daniel, who recently turned 13, wrote. “I finally saw the monster that is ALS, was finished destroying our life. I saw the life leave his body.”
The poem (read it in full below) is a work in progress. Daniel is being mentored by Wendy Angulo, a poet in the New York City borough of Queens, through an art-therapy program called ALSO US. It takes its name from ALS, a disorder that affects the function of nerves and muscles. There is no cure for ALS and no effective treatment to halt or reverse its progression, according to the website of the National Institute of Neurological Disorders and Stroke.
Wendy said she’s been working with Daniel for more than two months. In an introductory call, he shared with her his story and an initial poem he’d written. He did that piece as a class assignment. Thing is, the teacher had asked students to share something lighthearted, and when she got Daniel’s poem, she sent it to Sandy, saying she needed to see it. While other kids wrote about silly or fun things, like playing the video game “Fortnite,” her son’s topic was his dad’s deteriorating condition.
No remission, no hope
Daniel, sitting with his mom on the patio of their home, explained why he strayed from the assignment. “There were no lighthearted feelings during that time. It was all taking care of my dad, or … .” He paused to choose his words. “It was just not fun in general. I didn’t really have a lot of those feelings anymore.” So he put into the poem the feelings he did have: sadness and anger.
His sixth-grade year was awful, Daniel said. Not school, but home life. “Every day, my mom (also an Oakdale Unified teacher) and I had to come home and take care of my dad, but we couldn’t really do anything to help him. The cycle exhausted us, mentally, physically and emotionally. It just screwed us up.”
Her husband’s ALS affected the way his brain processed information, Sandy said. During the summer months after being diagnosed, he actually cranked out two books: one a Western tale that long had been in his head, the other an autobiographical work titled “It is What it is: One Man’s Story of Life Before and After ALS.”
He no longer could speak, and could move only his thumb, so that’s how he typed. His mind was clear, though. But all too soon, his personality began to be affected, his wife and son said, and he no longer was himself. “He lost who he was,” Daniel said.
When Lance died, Sandy was able to focus on helping her son heal. “I went looking for help because I had a little boy who needed something.” She learned about Hope Loves Company, a nonprofit whose mission is to support children who’ve had a loved one battling ALS. That in turn led her to ALSO US and Wendy Angulo, who got involved with the group after a close friend was diagnosed with ALS.
The goals she and Daniel have with his poetry, which he wants to perform as spoken word in a video and in live presentations, are to feel part of a community, to share his story to help other youth who are going through the same thing and to personally heal from his pain and grief.
Because while Daniel said he’s in a better place than when his dad was sick and when he died, he believes he’ll always be “emotionally scarred.”
“It is what it is”
The title of Lance’s autobiographical book is taken from the first words he uttered when he received the ALS diagnosis, Sandy said. “That’s the way he approached his illness: ‘We’ll move forward and do the best we can,’” she said. The five words are engraved on one side of a silver pendant Daniel sometimes wears. On the other side is his dad’s thumbprint.
But a determined spirit was no match for the ravaging disease, and its toll was by no means just on Lance.
When not taking care of his father, Daniel allowed himself to get lost in video games. “That way, I didn’t have to deal with the outside world. But there wasn’t a lot of enjoyment around that.” It was just a way of passing time.
The boy who’d found happiness through wrestling (coached by his dad) and theater (he performed with Sierra Repertory in Sonora) became more isolated. “And then when his dad passed away,” Sandy said, “he had a hard time because none of the other kids knew —”
“— exactly how to deal with me, my loss,” Daniel said, finishing his mother’s thought.
“He felt like his friends didn’t care, but it was more like they didn’t understand,” Sandy continued. “You’re in a place they haven’t been.”
Helping people relate to what ALS families are going through is some of what Daniel wants to accomplish through ALSO US. Gillian Wegener, an Oakdale Junior High teacher and former poet laureate for the city of Modesto, helps present spoken-work performances at venues including the Barkin’ Dog restaurant in downtown Modesto and the Carnegie Arts Center in Turlock. “She said when Daniel is ready to read his poem, she has an audience for him,” Sandy said.
As he was dying, Lance Campbell expressed some things that were important to him, including that Daniel continue his wrestling and that his family help keep a spotlight on ALS. Daniel hasn’t been able to honor the first request. He competed in one tournament and could endure no more. “I miss his presence,” he said. “Now that he’s not there ... it kind of just brings sadness.”
To fulfill the second request, Lance’s son is doing his best. “He wanted to spread awareness,” Daniel said. “In the beginning, he knew he would probably never be cured or even helped, but making people aware would bring more help to us and to others.”
What follows is the poem Daniel Campbell is working on with Wendy Angulo of ALSO US:
I heard my father speak with a slight slur.
I saw my father limping.
I got the news that my father had ALS.
I saw my father with a cane.
I saw my father with a feeding tube because he couldn’t eat or swallow.
I saw my father couldn’t go upstairs.
I saw my father use a walker.
I saw my father in a wheelchair because his legs could no longer function.
I saw my father in an electric wheelchair.
I saw my father unable to stand without help.
I saw my father unable to leave the house.
I saw my father lose his ability to eat.
I saw him lose his ability to speak.
I finally saw the monster that is ALS was finished destroying our life.
I saw the life leave his body.
I see myself changed by the experience.
I hope that no one else will experience it.