One month after the birth of his son, Steve Saling was diagnosed with amyotrophic lateral sclerosis, known as ALS.
Saling, working as a landscape architect at a top design firm in Boston, was given three to five years to live. Despite his diagnosis, Saling said he was determined to not let it become a death sentence.
“From the beginning, I was determined to live another 38 years,” he told CNN.
ALS damages the nervous system as those suffering from the condition lose the ability to speak, control their bowels and even swallow, with the muscles in the diaphragm and chest wall eventually begin to break down, affecting the ability to breath. The mind and senses remain intact.
Patients are faced with the eventual decision of whether to undergo a tracheostomy to be connected to a ventilator. An estimated 10 percent of patients in the U.S. go through with the procedure, while 90 percent of people with ALS opt against it.
“Our society treats prisoners with more dignity and respect than the chronically disabled, kept alive but with no life,” Saling said. “I knew that I had to work quickly to avoid their fate.”
There is no cure for ALS, and there are few treatment options, some which are extremely painful and have mixed results. Six months after his diagnosis, Saling was walking with a cane.
Saling met Barry Berman, the CEO of the Chelsea Jewish Foundation, an assisted-living facility in Massachusetts. Berman was in the process of developing a new kind of nursing home that he called a GreenHouse that specialized in the care of young people with disabilities, particularly ALS and multiple sclerosis.
Berman and Saling made an immediate connection, and Saling moved into one of Berman’s assisted-living facilities. Berman said Saling was the natural choice to help with the house’s technology.
“As we got to know Steve’s ability with technology and his knowledge as an architect, it just became a natural progression that he would provide the expertise and knowledge to get all the technology in the house,” Berman said.
Saling designed an electronic automation system called a Promixis Environment Automation Controller, or PEAC, with a $500,00 grant from Berman. The system uses a wireless signal to allow Saling and other patients to open and close doors, call an elevator and operate TV and lights all with small eye movements or by using brain waves.
The Steve Saling ALS residence opened in Chelsea, Massachusetts in 2010. The facility is the only one where people on ventilators can get out of bed daily and leave the building. Saling even designed the garden with a reinforced layer so wheelchairs wouldn’t damage the lawn.
Saling’s goal was to make the facility feel like home. The residence allows family and friends to visit at any time.
“They are encouraged to come and have their meals and stay overnight and be an integral part of the house; it’s part of the GreenHouse philosophy,” Berman said.
Saling has given hundreds of tours to people from all over the world and has started an organization, the ALS Residence Initiative, to encourage the development of similar homes nationwide.
Saling said he’s well aware of the mental and physical challenges of ALS, especially when it comes to developing a normal relationship with his son, who is now 10 years old. Saling recently made a presentation for Finn’s fourth grade class about disabilities, a proud moment that reminded him how happy he is to still be alive.
“Don’t make the mistake that all of my doctors did and assume that because I am 100 percent dependent on the care of others for the rest of my life, that I don’t have a quality of life,” Saling said. “I can’t imagine enjoying life more.”