One night in July of 1989, he woke up in the middle of the night
with a strange sensation in the biceps of his right arm. The muscles started twitching, and it continued. This would mark
the start of his battle with Lou Gehrig’s disease.
In October of 1989, as his muscles continue to deteriorate, he consulted various well-known doctors in the United
States, who gave him their services free of charge. After a series of tests, the result was that he had a fifty-percent chance
to have contracted what is called Amyotrophic Lateral Sclerosis. Upon hearing this, he asked, “Is this disease life
threatening?” The doctor told him the usual period of time was three years.
HIS DISEASE WITH HIS NAME ON IT
Msgr. Al recounts: “I was in the car with Bill Vita
(Bill Vita is his brother-in-law and in-charge of his fundraising operations at that time). I said, “Can you believe
it? This disease ALS has my name on it.” Frequently, I would sign my name ALS. in place of Al Schwartz.
Apparently, we two — that is, amyotrophic lateral sclerosis (ALS) and yours truly, ALS — were destined for each
HIS BATTLE WITH ALS
ALS brought him
many sleepless nights, as sleep disorder is one of the frequent problems of ALS patients. He would wake up in wee hours after
a mediocre sleep not from tossing and turning all night because tossing and turning are luxuries which are denied the ALS
patients, but from pain in his arms, legs and all over his body.
He would also
suffer bad falls trying to help himself stand.
As the disease is described as “terminal”
and “very cruel and demeaning”, he writes, “Right now, I have very little
control over my environment. I have lost all independence and so-called dignity. However, I do not find this all that devastating.
I think of Jesus, Lord and Master, who had all power in heaven and earth, yet He deigned to become a small infant. He entrusted
Himself totally to the Virgin of Nazareth.” Msgr. Al became totally dependent on the help of others and so he considered
the Sisters who were taking care of him as his angels of mercy.
In officiating Mass, flies landing on his nose or his forehead added to his agony.
Also at Mass, he had to struggle to keep his head erect to avoid having it fall down on his chest. If so, a Sister would come
to lift it back again.
He also became extremely sensitive to cold and heat. But, what struck Msgr. Al the most in his sickness is that
it kept him from running, the only secular diversion that he loved.
STAGES … THOUGHTS ON LIFE-SUPPORT SYSTEM
As the disease progressed, his health deteriorated
and declined. He writes about his thoughts on life-support system.
normally, an ALS patient, in the final stages of illness can no longer speak. However, the eye muscles are never affected
by the disease. In the last five or ten years, technicians have developed sophisticated computers with voice synthesizers
which can be activated by simply winking and blinking your eyes. The good news is that, even if you are on life-support systems,
breathing through a tube in your throat and eating through a tube in your stomach, you can still communicate with the outside
world. I personally feel a certain revulsion at the thought of being hooked up to these life-support systems. The idea of
lying there, totally paralyzed, breathing through a hole in your throat, eating through a tube in your stomach and speaking
through a computer by winking and blinking your eyes, holds little appeal for me. My gut instinct at this point in time, although
it is quite possible that later I may change my mind, is to let nature take its course and to accept death without trying
to outwit it by any extraordinary means.
Some ALS patients who are on life-support
systems are held up as heroes. They are spoken about as models of courage, determination and as having the will to live. This
is one point of view.
An equally strong case can be made for the opposite. It can be argued
that it is just as courageous, heroic and noble to accept death with calm, dignity and serenity as it is to accept a prolonged
illness and disability with the same calm, dignity and serenity.
those closest to me, namely, the Sisters of Mary, all seem to feel rather strongly that I should hang on to life as long as
possible, even though I am hanging only by my fingernails. They even make me feel, at times, that to choose a different course
could somehow be interpreted as being a coward.
of the issue, however, is not what I want nor what the sisters want nor, for that matter, what anyone else wants. The real
question is: what does the Lord want? In this spirit, St. Paul writes, 'Whether I live, I live for the Lord, whether I
die, I die for the Lord. Whether I live, whether I die, I am the Lord’s.'”