PatientsLikeMe ™

My name is Steve Saling and I have ALS. I cannot speak. I cannot walk. I have no functional use of my arms or hands. So, maybe you can understand the skeptical looks I get when I tell people that I have never felt more vital and fulfilled. My secret is that I don't put all of my hopes on someone finding a cure. Don't get me wrong. I really want a cure to be found but my happiness doesn't depend on it.

My life's story wasn't that unusual before my diagnosis. I had been a successful landscape architect for 13 years. My specialty was in designing urban public spaces such as plazas and historic streetscapes. Ironically, a big part of my job was making sure that all public spaces were fully accessible to people with disabilities. On a whim, I decided to relocate from my native Atlanta to Boston in the fall of 2005. I found my dream job working at a high end design firm overlooking the historic Boston Common. About that same time, I noticed a peculiar weakness in the grip of my left hand. In the beginning, it was only once or twice a week when the pencil would drop out of my hand when I tried to write. I spent months with different doctors dismissing my symptom when I was finally referred to a neurologist in the spring of 2006. After exhaustive testing, I was diagnosed with ALS. It was a Friday, the 13th of October, 2006, one month after my 38th birthday.

ALS is a progressive neurodegenerative disease that destroys the nerve cells responsible for voluntary movement. I had already researched the prognosis of ALS when I got my diagnosis four years ago. I knew that as I slowly became paralyzed and my speech deteriorated, my breathing would inevitably become compromised.

Despite the grim words upon my diagnosis, I instinctively knew that ALS would not be the end of my life, just a change in its direction. From the beginning, I have accepted that I will one day require chronic ventilation support to sustain my life. The thought of letting myself die by suffocation was never a consideration. I just had to secure a way to provide for my care. I have met people like me who have become wards of the state, bed bound in a chronic hospital because they have no option to stay home. They are "sentenced" to living in a chronic hospital once their breathing is compromised. I use the word sentenced intentionally as they have given up their freedom for the privilege to live. I was determined to find a way to live my life with no bars.

ALS does not HAVE to be fatal. The medical cure may elude us, but I am here to tell you that there is a technological cure and it is on full display in our nation's first ALS Residence open now in Chelsea. I first met my partner, Barry Berman, in the spring of 2007. He ran a traditional nursing home and wanted to do something radically different. Our first discussion was about the possibility of having a dedicated ALS Residence within his proposed GreenHouse project called the Leonard Florence Center for Living. He needed help to make his ALS Residence a reality and here I was, an architect, specializing in accessibility, and a keen interest in technology who actually has the damned disease. It was truly fate that brought us together.

The past four years has been an amazing journey. I have worked shoulder to shoulder with the architects to design a $38,000,000 building and my new home. I was given free rein to design the most elaborate automation system that I could dream of and then was given almost a half million dollar budget to build it. My whole life has perfectly prepared me to be right where I am today. I was a very good landscape architect and I am proud of my professional achievements but my most important work will be done after I got ALS.

I could have withdrawn from life and spent the last four years depressed and no one would have blamed me. I could have listened to my doctors and gone home to prepare to die. I could have, but I choose to accept my life the way it is. As a result, I am as happy as I have ever been and will contribute more than I ever would have if I'd remained healthy. Lou Gehrig may have said it first over 70 years ago but I am the luckiest man on the face of the Earth.

Why so lucky? Unlike most who choose to die because they fear living on a ventilator, I am living in the most technically advanced home of its kind. With only a twitch or a blink, I can independently turn off my bedroom lights, open my door, propel my wheelchair through the house, down the elevator, and out to the garden adjacent to the cafe and deli. I can send a text message to the cafe for anything on the menu that I might like. After a nice afternoon outside, I can return to the living room, still completely independently, and socialize for a while. When I return to my private room, with no assistance, I can drop the window shade, turn up the air conditioning, dim the lights, and watch a movie on my flat screen TV. If there is something that I cannot do for myself, I can use the same controller to call for help. I would never have this kind of mobility and independence living at home.

The sad fact is that there are only 10 people able to live in the ALS Residence at any given time. That is why we have created the ALS Residence Initiative (ALSRI) as a national effort to duplicate our project nationwide.

Before any national effort can be launched however, we must prove to the world that this model of care is successful and sustainable. I'd be lying if I didn't tell you there are a lot of people who think we are well-meaning but naive. There are those who think we will fail within the first year. These aren't mean people who want us to fail but they lack vision and are jaded by the status quo. We have been meticulous in building the finest team of caring and compassionate people to work at the Leonard Florence Center for Living. The staff and volunteers have come together with the residents to create a family. This is not a place to come work. It is home and it is the honor of a lifetime to be involved with this paradigm-shifting venture.

The Leonard Florence Center for Living will show everyone that a vented life can be a quality life. Most of what ALS takes away, technology can give back. The ALS Residence offers unprecedented automation that provides unparalleled independence and productivity. To do anything less, is to do less than we are able.

Thank you for your time and remember, life is good.

visit my website - www.facebook.com/smoothsaling

Have faith in yourself - I hope to meet you...

All pix post-ALS