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As the national labor correspondent
of The New York Times for over 40 years, I always considered
a vibrant, principles union movement a hallmark of American
democracy. My mission, I felt, was to bring together organized
labor, employers, the workers and government.
My most valuable tool, I thought, was making sense of the
turmoil. I was wrong. My most valuable tool is words, the
words I can now use only with difficulty. My voice is debilitated--mute,
a prisoner of a communication system damaged by a stroke that
has robbed me of language.
Individuals who have had a stroke battle
against the twin demons of frustration and depression. Their
recovery period is maddeningly gradual. Some remain permanently
incapacitated and unable to care for themselves. I am fortunate
to have had sufficient recovery that I am physically independent;
my ability to speak, however, demands great effort and is limited
to short utterances.
The stroke happened in September 1990 at
a time when I could take delight in my good health and vigor
as a widower of 80 years young. I had recently met Marjorie
Neikrug, curator of a photographic gallery and the woman who
would become my wife.
On Sept. 29, a Saturday, Marge and I went
to the funeral of a union leader at St. Patrick's Cathedral.
We walked home and had lunch, planning to catch a train for
Spring Valley to visit Marge's daughter. We never did.
During lunch I noticed that my right arm
was getting heavier and heavier; then I passed out. Marge realized
I was in trouble and pushed me back into my chair. The ambulance
took me to the emergency room of New York Hospital, just a
few blocks from home. There a CAT scan confirmed that I had
suffered a cerebral vascular accident--in laymen's terms,
a stroke--caused by an embolism blocking the blood flow to
the main artery feeding the brain.
An experimental drug, Eminase, was administered
and prevented further damage within the left brain hemisphere
in an area that controls speech, reading, comprehension and
writing. The medical term for this disorder is aphasia. An
estimated one million Americans suffer it.
I was shell-shocked and disoriented, unaware
of what was happening to me. I desperately wanted to make
sense of the confusion, but every time I tried to express
myself nothing came out. I was forced to remain silent and
could not follow either verbal or written commands. Words
sounded to me like jargon, as though the people around me
spoke a foreign tongue. I could neither comprehend nor use
language. In addition, the stroke left my right arm and leg
semi-paralyzed. I lay in bed, staring blankly and feeling
helpless.
Over the next few days my doctors recorded
marked improvement in my strength. The most notable and rapid
accomplishment was to walk without any assistance. After long
and tedious hours spend with Marge, during which she rotated
my legs and, most importantly, gave me encouragement, it was
a blessing to be able to walk to her once again.
My understanding of simple conversation
also seemed to be returning. I began to produce what I thought
were words, but the puzzled look on the faces of y audience
showed my that my long-awaited words were nothing more than
gibberish. Then, little by little, people began reacting to
my vocalizations. Imagine my relief at again being able to
express my basic needs with a single word like "eat,"
"drink" or "toilet." Each utterance involved
deep concentration and struggle to produce a somewhat intelligible
word. Each "new" word was received with elation
by my family and friends, motivating me to go on. A baby must
be excited like that when he utters his first "mama"
and "dada."
It is difficult to covey the depth of my
emotional solitude. I did not feel like A.H. Raskin. I now
had a new self, a person who no longer could use words with
mastery. Privately I could do nothing but cry. With the tears
came feelings of anxiety and depression. I wavered between
feelings of melancholy and hope.
The desire to achieve, to succeed, to win,
to regain my confidence manifested itself in the practice
that Marge and I incorporated into our daily routine. Every
night I challenge her to a game. I has become our happy hour
as we play and joke. Whether it's dominoes, bingo or backgammon,
there is one rule: Marge can't win and I can't lose. I'm such
a sorehead.
The speech therapy, which I continued on
a daily basis as an outpatient at the Rusk Institute of Rehabilitative
Medicine, was a laborious and disturbing battle. My body was
nearly back to normal, but I felt that a black hole was swallowing
my speech. Would it be realistic to assume that the complete
physical recuperation would lead to a total re-emergence of
my language skills? Would this daily grind pay off? I persisted
and the therapists pushed my to do more.
My speech clarity was poor because of weak
facial muscles, so I had to focus on improving my articulation
skills. I sat before a mirror with Debbie, my therapist, intently
studying each movement of her mouth and trying to imitate
her with as much accuracy as possible. I was drilled to respond
to word retrieval tasks such as finding opposites, sentence
production and sentence formulation.
Reading was just as difficult. The printed
word at first resembled hieroglyphics. Later, individual words
became recognizable and took on meaning, but I could not decipher
a printed statement. Looking at a group of words was overwhelming.
It was as though the words were catapulting off the page
and I could not make sense of their significance. The therapist
presented two words, three words, four words and more until
I graduated to sentences. I felt mournful and frightened,
then tense, anxious and full of rage. Yet I knew that I had
to get back on that horse.
Initially, when I tried to write my name,
I just scribbled. Slowly, by copying the letters over and
over, it began to come back to me. Spelling was no longer
automatic. I was drilled to put down letters and words to
dictation, finish the spelling of incomplete words and look
for errors in misspelled words. Gradually I combined words
in order to form sentences, although I tended to omit the
articles and prepositions. Verb tense was yet another chore.
I had to re-think all of the irregular and plural forms before
printing it out.
I now realize that my vocation in
life has changed. Now I represent the one million Americans
who cannot speak for themselves. My plight and theirs are
one: to inform the public that those of us who have lost the
ability to invent fluent phrases or sentences have not lost
the ability to think. We retain the skill to communicate our
thoughts and feelings, whether through writing, picture boards,
pantomime or facial expression. We can still speak! We hope
that you will listen with your ears, with your eyes and always
with your heart.
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