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Disability Empowerment

How the Pandemic Gave Us A Perspective on Life for ALS Patients

Robert Paulson

Muscular Dystrophy Association Patient Advocate

As Americans struggle to adapt to various forms of isolation, I live and breathe my own imposed form of isolation every day. I am an 82-year-old who has been living with ALS for the past 27 years.

I live with a life-support ventilator, a stomach feeding tube, a tracheotomy, and a coughing machine. Since 1998, I have spent all my waking hours in a wheelchair unable to move my legs, arms, hands, fingers, and neck. 

ALS is a neurological disease that affects voluntary muscles that control movement, speech, swallowing, and breathing. On average, people with ALS, once diagnosed, live for three to five years, when the disease reaches the muscles that control a person’s lungs.

There is, however, a silver lining: the disease has no effect on the brain or eye muscles. Eye-responsive software, which allows one to control a computer with eye movements, can bring the ALS patient back to the world. 

The computer has become my voice — it has given me the ability to write and communicate via email, and it has given me access to the internet. 

Still, in a social setting, the computer becomes a barrier to greetings like a handshake or embracing. Just being confined to a wheelchair makes conversation awkward enough, requiring the other person to lean over or crouch down. 

My face being blocked by a computer is hardly a conversation starter. In group settings, I am usually alone with my thoughts or just listening to others speaking. 

From a distance

This pandemic, with its attendant limitations on everyone’s way of life, has forced everyone to confront a level of deprivation and isolation not unlike what I experience daily. Just as those with ALS have a sense of being locked in, now all Americans, in reality, have experienced what it’s like to be isolated from one another, without touching, without shaking hands, standing six feet apart, faces covered, also locked in their own bodies.

People living with ALS are ultimately denied the ability to give or receive comfort or love through the basic experience of human touch. Communication itself becomes constrained. For the person with ALS, that loss is replaced by a computer screen. For those socially isolated because of the pandemic, it’s eerily similar as they, too, must communicate via disembodied screens.

Just as a person with ALS may move through pedestrians in a wheelchair, not able to meet the eyes of those who pass by, practicing social distancing also means no longer walking freely among fellow pedestrians; it means diverting one’s eyes and concentrating on keeping a safe distance from others.

There is one striking difference between the novel coronavirus and ALS: The majority of people who contract the virus will recover. ALS is a life sentence. 

For me, I will press on to my last breath. I have family who are dear to me and a wide circle of devoted and supportive friends. I have a lot to be grateful for. Thanks to technology, unlike Lou Gehrig, I am living a long life.

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