Kathryn Voight will miss the feeling of her forehead touching her husband’s when they fall asleep.
Most of us don’t spend time thinking of these things. Most of us have the luxury not to.
Kathryn and Jerry Voight were enjoying their lives. In 1998 Kathryn was a 62-year-old woman enjoying her career and her children; life was going well. And then she tripped. Actually, she tripped several times while she was on vacation. Jerry was concerned, but for a year, Kathryn minimized the problems.
The following year they went on vacation and, as Kathryn was about to get off the plane, she looked up at Jerry and said, “I cannot walk.”
They were referred to Penn’s Neurological Institute. The diagnosis confirmed their worst nightmare: Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease.
There is no cure for this disease that affects 30,000 people in this country. Typically, the onset of ALS involves muscle weakness, spasms or stiffness. There is almost inevitably progression of muscle atrophy and paralysis that moves up the limbs. ALS affects vital functions such as speech, swallowing and breathing, but rarely the mind.
Kathryn and Jerry both felt crushed when they received the diagnosis. They described the shock, then terror, then confusion, then tears… and more tears. Fortunately, they have supportive and compassionate friends, all of whom have experienced suffering. With their care and support, Jerry and Kathryn made a decision to live with this disease as well as they could, for as long as they could.
In the four years since that diagnosis, she has regained, then lost, the ability to walk. Kathryn spends her days in a motorized wheelchair.
Now that she is more dependent, she says daily life is easier than it had been. For the last year, she had difficulty leaving the house because it had steps. When she did get out, driving was difficult, as were transfers from the wheelchair to the car.
Now, her attitude has caught up with her disability. She has given up trying to walk. She has had wheelchair ramps built in her home, and she purchased a van adapted for her to drive.
In many ways, she considers herself fortunate. Her husband is retired and very devoted to her. Between their insurance, Division of Vocational Rehabilitation, the ALS association and personal resources, they have been able to buy most of the equipment Kathryn needs. And they had the foresight to purchase long-term care insurance.
Even so, both are pretty frightened about the future. According to the ALS association, the cost of care could be up to $250,000 a year. The Voights’ long-term care policy will cover only $45,000 a year.
And the relentless progression of the disease adds to Kathryn’s anxiety about the future:
“Although I can still feed myself, I drop things frequently and can no longer open cans. I can almost see the motor neurons dying in my brain.”
According to the ALS association, the average life expectancy of an ALS patient is two to five years after diagnosis.
Despite these facts, her daily life is manageable – even joyful on occasion. But her mind frequently wanders to what might be a dark and difficult future. Her blue eyes look sad when she says: “Thinking about the future is the most difficult part for me…. I hate to admit this, but I am jealous of the decades I probably will not see.”
Because of her anxiety about the future, she is frustrated that she cannot fully experience her life in the present.
“It is a constant struggle to live in ‘the now.’ For example, one of my great joys is swimming in the ocean. The last time I went in, it took two people to carry me and I thought, ‘Is this the last time I will be in the ocean?’ I understand that this is realistic thinking, but when my mind goes there, then all I could do is feel anxious or sad about the future and I was unable to enjoy the ocean that day. So any pleasant experience I have is polluted by my fear that it will be the last. The issue of living right now becomes more important every moment, because I don’t know how many moments I have left.”
More than death, she fears losing human contact. She said that some people with ALS are able to communicate their emotions through their eyes until the very end. But many are not. Her fear is that she will no longer have a way to communicate with people she loves. Death makes her feel sad, but losing connection with loved ones is her ultimate nightmare.
I wondered if, despite her many losses, there was a positive side to having this disability. She answered quickly, as though she had been thinking about it for a long time.
“Yes,” she said. “I can listen better. There was a period recently when my voice became very weak. Since most with ALS eventually lose their ability to speak, I thought this was the beginning of the end for me. But for some reason, there was some improvement – it could have been just a cold. However, during that period, when I thought I lost my own, I became amazed at the beauty of the human voice. I became enamored with not only the spoken human voice, but singing, music – almost everything.”