Todd Alward’s journey with ALS is approaching its final destination.
He’s excited about his next journey, which begins Monday. His journey to heaven.
“March 13 is the first day of my going-to-heaven journey,” Todd said, sitting in a bed at a hospice home in Byron Center, where he moved on Jan. 20, the day after his 59th birthday.
Without his medicines, oxygen and breathing assistance, and with closely monitored pain control, Todd is expected to slip away. It could take hours, days, a week or more.
He’s ready, he says. Excited, even. Since being diagnosed in 2013, ALS has robbed Todd of his dignity, his muscles, his breathing and soon, he fears, his speech.
“It’s my decision,” he said of beginning the dying process, which will be handled by a hospice doctor. “It was something I kind of knew right in the beginning, when Dr. Twydell told me (the diagnosis).”
On July 10, 2013, Paul Twydell, DO, a neurologist who specializes in neuromuscular disorders with Spectrum Health Medical Group, broke the news to Todd. The three letters that would forever change his life—ALS.
At that time, Todd had been experiencing strange leg pains. He noticed arm weakness when he’d try to pull back the string on his bow. He got cramps during his job as a truck driver for Lumbermen’s. When he tried to mow the lawn, his ankles would give out. Even as early as 2006, he remembers noticing one arm was smaller than the other.
When Dr. Twydell confirmed the ALS diagnosis, Todd remembers pausing, but making a decision right then and there.
“I sat back for a moment and decided, ‘I’m going to do the best I can with it.’ I just kind of said, ‘Keep smiling,’” Todd said during an interview with Health Beat two years ago. “I want to deal with this in a positive way. It’s so important to keep smiling, keep laughing and share smiles.”
And he has. Last week, lying on what will soon be his death bed, Todd still smiled.
He spoke of his future. A happy and soon-to-be gratifying one, he believes.
“In the beginning, I realized when the time came that I couldn’t walk, my arms were about done, not knowing where I would be with breathing or talking, I knew there would be a time I would like to go to heaven,” Todd said, surrounded by his mom, June, sister, Leisha, and brother, Ross.
“As my body wore down, I was just waiting for that right time,” he said. “I was always telling everyone ‘the middle of March.’ I decided I just needed to pick a day. I picked the 13th and I’m sticking with it.”
Family is forever
The tears flow. From Todd, June, Leisha and Ross. They’re meant to. This family has made it a life mission to always be there for one another, to love, support, honor, no matter what.
No matter how much Todd and his family fought, and accommodated his weakening body, first in June’s home with a stair lift and other home modifications, and now at the hospice home, it appears ALS is about to win.
But in a larger sense, they all believe, Todd will.
“I’m happy in my heart and mind, knowing I can change, as in get healed when I go to heaven,” Todd said. “Like it says in the Bible, God promises to make you strong, firm and steadfast. That’s what I look forward to. And of course, seeing Jesus. All that together helps me do this with a smile on my face and a happy heart.”
Dr. Twydell is sticking by his side. He visits Todd at the hospice home. He texts him. He tries to keep Todd’s spirits up with memes.
But Dr. Twydell is crying inside, too.
“It is with great sadness that I must say goodbye to one of the most courageous and uplifting patients I have ever known,” Dr. Twydell said. “Over the last four years, Todd has been an inspiration to others with ALS as well as those around him. I am honored to be able to call him my friend.”
Saying goodbye to a friend is always difficult. Doctors, especially caring ones, are not immune to the pain.
“While, for purely selfish reasons, I don’t want to see him go, his assuredness about his decision to end his journey is one that I believe all of us would like to have at the end of our lives,” Dr. Twydell said. “We certainly have the means to keep people living past this stage of the disease, but he has decided that he does not want to enter that realm of the disease and he is at peace.”
Dr. Twydell said doctors at the hospice center “will most likely give Todd a combination of morphine, a strong pain relieving drug that also slows down his breathing rate, along with lorazepam, a cousin of Valium which reduces anxiety and also sedates him. This combination of medications will allow him to come off of his breathing assistance and, as his breathing slows down and oxygen levels drop, he will slip into unconsciousness and eventually pass away with no pain or suffering. This could take minutes to several hours or possibly days.”
No matter how long the dying process takes, it’s clear Todd’s attitude and faith will leave a lasting impression on the living.
“I think many of us could learn from Todd’s unwavering positive attitude in the face of absolute certainty of death,” Dr. Twydell said. “I am amazed by Todd and others who have acquired this disease as I see them accept it and make very difficult decisions as the disease progresses. The loss of function, autonomy, and the physical, emotional, and financial strain on theirs and their caregiver’s lives is immeasurable, and yet they have no choice but to face it. Todd has faced it with great courage and confidence.”
Dr. Twydell, his wife and kids have visited Todd in the hospice home several times. It’s meant a lot, to Todd, and to his family.
“I feel like he’s part of our family,” June said. “He’s been so great and supportive for Todd. He’s been texting little cheerful things.”
June has always been supportive of Todd. Even now. In the face of death. June’s love runs deep. Her tears flow from a well that few can understand. She gave birth to this boy. She was this baby’s first hello. Soon, she will say a final goodbye.
She was there when he took his first breath. She watched over him these last months as his breaths grew shallow and more difficult. She will be there soon, to watch him take his last.
She watched him learn to walk, and she watched in the last few years as this dreaded disease stole his walking ability.
She wants to keep him around. Her son. Her beloved son. But this is not a selfish love.
“It’s just a multitude of emotions,” June said through tears. “I’m so proud of him, yet I feel I could explode. But yet I can’t because I’m happy for him. He’s talked to me about (wanting to die) for quite a while. I guess I kind of didn’t want to listen.”
As any wise mom would do, June has asked him, repeatedly, if he is sure he is making the right decision.
‘It’s still hard’
“We’re supporting him with all of his decisions,” June said. “I’ve asked him so many times, ‘are you sure this is what you want to do?’ I have to feel in my heart that it is right. Yes, it is, I know. But it’s still hard.”
Gut-wrenching hard. The deepest bond of all, hard. The love that never dies, hard.
She trusts, even when he’s gone, that Todd will still be with her. In memories. In smiles. In the way the wind blows. In the stillness and symbolism of nature, where Todd thrived.
He’s always been at home in the woods. It’s no accident his hospice house room faces, and is surrounded by, woods. He’s watched cardinals flit about in the snow.
June has heard something special about cardinals.
“Somebody once told me they were angels,” she said. “It’s kind of nice to think something like that.”
Todd said he recently saw his first robin of the season, signifying spring.
But there will be no spring this year for Todd.
A photo clings to his bulletin board, surrounded by photos of family and friends. Healthier times. It’s a photograph of a tree outside of his hospice house sliding glass doors. The tree trunk has been injured, ravished by disease, lightning or wind perhaps. It appears as if two arms are reaching toward the heavens.
To Todd, it’s an angel, beckoning him, comforting him, there to bring him home.
He’s also finding comfort in a book that hospice staff read to him: “Imagining Heaven,” a story of people’s experiences with the afterlife. He knows he will be there soon, a main character in this book about heaven. Soon it will be real, no longer imagining.
In his short time at hospice, he befriended a woman across the hall. She, too, suffered from ALS. She could no longer talk. She died on March 6.
“Everyone here is saying we’re so similar,” Todd said. “Her plan was to come here to start her trip to heaven. She was happy with it and she was full of smiles, too. It’s so nice we both feel and know we are ready. That helps me even more just to be positive and be happy with the thought. It just makes me feel wonderful.”
He cries, though. He’ll miss so much in this life. His family. His son, Chase. His many friends. His doctors. His caregivers.
He chokes up as he looks over at his mom, sister and brother, silhouetted in the streaming window light. He struggles to take a deep breath. June leaves her chair and hugs her son. She lifts a cup of water and straw to Todd’s lips.
The tears roll.
Todd, June, Leisha, Ross and Set Free minister Dean Vander Mey, planned Todd’s funeral a week before Todd’s journey to heaven was to begin.
Todd picked out the songs: “Give Me Jesus When I Rise,” “Amazing Grace,” “Raise Me Up,” and “Wind Beneath My Wings.”
“It was nice to have a special friend like Dean to help,” Todd said. “That made me feel more comfortable and at ease.”
And Monday, he will begin easing out of life. Soon, a final “I love you,” a final smile and he will be gone, the victim of a disease that may have robbed him of his muscles, but never of his true and abiding strength.