Make the Most of What You Have
“Three years before we met, Jason was diagnosed with ALS at age 28,” says his wife, Annie Walker. “I was working at a local pub, and Jason and some friends came in. We talked that night and he explained he had a disease that affected his muscles.”
Even today Jason Walker is perfectly healthy, other than the fact he has been living with ALS for the past 14 years.
Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig’s disease, is a disease of the nervous system that weakens muscles and impacts an individual’s physical function.
After realizing they shared interests and a good sense of humor, they began to form a friendship. Jason’s form of ALS is slow progressing, so the couple decided to see where their relationship would take them.
“We hung out and would go on friendly dates,” explains Annie. “As time went by, it began to grow into something more.
“We were together for almost six years before we got engaged,” says Annie. “Jason proposed to me at a bed and breakfast in Tuscany, Italy. The following year we got married on a beach in the Bahamas.”
About four months later, Jason’s ability to breath normally became an issue, and the newly married couple had their first major decision to make.
“We could either bring in hospice and wait for the end of Jason’s life, or have him receive a tracheostomy and begin to use a ventilator,” she says. “The moment Jason chose to live with a ventilator, we knew he would go from being mostly independent, to needing 24-hour care.”
Eighteen months ago, Annie and Jason received a precious gift, their daughter, Eloise (Ellis).
“She’s our joy and our reason for living,” Annie says. “Jason’s situation has been her reality from the beginning, and she knows no difference. Our job as parents is to teach her to be a kind person, and through our special circumstances she has already learned what true love and compassion are.”
The Walkers are grateful for every second they have together as a family. “We aren’t able to get out and do some things other families do,” she adds, “but because of our situation, we spend most of our time together.
“I watch Ellis and Jason interact. She has learned how to climb up in his chair with him. When they share kisses and cuddles, Jason will close his eyes to soak every bit of it in. A great day for us is filled with those every day moments.”
Since his diagnosis, Jason has been working with the ALS Association through fundraisers and support groups.
“We heard of a talent agency that was looking for people with ALS,” Annie says. “Jason was interested but didn’t know what was going to happen other than they were filming public service announcements (PSA) for ALS.”
After being chosen to participate, the film crew came to the Walker’s house to capture them in their everyday setting.
“It took about 12 hours to complete the filming,” says Annie, “and they made sure to accommodate Jason’s needs during that time. Ellis was a bit distracted by everything going on but she did very well. The greatest part about doing this PSA is now we have it to share with Ellis when she is older.”
When Annie’s not at work at State Farm® in New Albany, Ohio, she’s the primary caregiver for Jason. “I have a crazy life but I try to live normally. Coming to work every day is my escape,” she says. “It’s nice to have a change of pace and to have normal conversations with agents and co-workers.”
Jason went through some dark times after receiving his diagnosis. And although he has every right to be angry at his situation, he remains positive.
“Something like this could happen to anyone, and it’s important to stay positive and make the most of what you have,” says Annie. “We see this as a gift of sorts. Our time together is precious and we know to be in the moment and enjoy everything no matter how little.”