CODI: Cornucopia of Disability Information

Aging While Disabled: Personal Perspectives

Aging While Disabled:  Personal Perspectives

Patti Strong
Polio Survivor
Chairperson, Rancho Los Amigos Medical Center Post-Polio Support Group

Arthur Gottlieb, Esq.
Stroke Survivor
Long Beach Chapter of Stroke Association

__________________


Under the Magnifying Glass:  A Polio Survivor's Perspective 

Strong: During the last year, it's been my pleasure to serve as a member of
the planning committee for this conference. One of the many things the
committee did was to adopt the conference logo shown on the cover of your
syllabus. You probably have already figured out that it represents polio and
stroke seen through the magnifying glass of aging. For indeed, aging does
seem to magnify many things, including the issues of our disabilities. During
the next two days many medical professionals will lecture about the physical
conditions that we face. They will be speaking to the linear, logical,
language-oriented, and detail-oriented left-brained side of ourselves. To do
this, they will no doubt show charts and recite percentages and demonstrate
findings. So they should.

Magnifying Glasses I Have Known

But meeting the challenges of aging with disability requires more than just
medical resources. Each of us is faced with a lifelong challenge that
requires the excellence of our whole person. And inasmuch as this is a
conference dedicated to the whole person -- body, mind, emotions, and
spirit -- I will proceed differently from the medical experts. I will speak
to the right side of our brains, that intuitive, imaginative, emotional, and
relational side of ourselves, which sees the whole of things rather than the
mere details. To do this, I will tell you a story, my story. Surely, there
are differences in details between your story and my story, but in essence we
struggle with many of the same issues and we must marshal essentially the
same resources in order to age well. By hearing how I meet the challenges in
my story, I'm convinced that you will be helped to meet those in your story.
So sit back; let me tell you a story.

Magnifying glasses have actually played a major role in my story. The one in
the logo which represents aging is only the most recent magnifying glass that
I have known and loved. The very first glass that I remember, I saw when I
was six, which was only three years after I first had polio. I was in a
kindergarten playground. There was a light snow and I was enjoying looking at
the snowflakes falling against the dark blue sleeve of my teacher's coat; but
not until she raised her magnifying glass and I peered through it was I able
to marvel at each flake's overwhelming beauty and startling uniqueness.  That
humble hand lens had opened to me a whole new world, not only of snowflakes
but of feeling, and it was the world of wonder.
 
As I grew up, I admired Sherlock Holmes. When he was armed with his trusty
magnifying glass and his dedication to ferreting out clues, he could solve
even the toughest of mysteries. How? Just by paying attention to details that
others ignored. Through the magnifying glass of Sherlock Holmes, I learned
the indispensable value of curiosity.

Later, while in college biology, I wrinkled up my nose at dissecting a frog,
perhaps partly because I myself had felt the dread of being coolly analyzed,
you might even say of feeling dissected, by so many doctors who examined me
when I was a little girl with polio. If I focused on my feelings, my
compassion, it didn't do the frog any good. He was already dead. And it
certainly didn't do me any good either, for it clouded my intellect. I needed
all my intellect, all my concentration to solve the problem at hand, which
was getting a good grade and understanding that stupid frog. So the
microscope and even the lowly magnifying glass in that situation helped me
understand the value of keeping a cool head while doing analysis.

Finally, it was as an art historian that I most often used the magnifying
glass. As you might expect, admittedly sometimes with curiosity and often
with wonder, I frequently used a magnifying glass to analyze an object. But
the glass could teach me more than that. It could teach me about
authenticity, for scholars in the history of art are constantly challenged
with issues of real identity. Is this work a masterpiece by Rembrandt or is
it just a good copy, an honest copy, or is it maybe a dishonest forgery? Now,
while it is true that every painter has a kind of signature brush stroke, a
little detail with which he can be identified, this can be forged by a very
skillful person. What can't be duplicated is the overall sum of the parts,
for each artist imparts to his work an elusive feeling, a presence if you
will, a certain je ne sais quoi that cannot be duplicated anywhere in the
universe. As an art historian, thus, I learned that to discover true
identity, one can focus on the details all right, but that looking at the
whole picture is where one finds undeniable authenticity.

The Challenges of Post-Polio Syndrome

Well, so much for my story. What are some of the challenges which the
magnifying glass of aging brings to my life as a disabled person? First and
foremost, the physical. When I was young, I used to say "I got polio in my
right arm" because with its visible paralysis, that was the only part of me
that seemed to have been affected. As I've aged over the past ten years and
experienced post-polio syndrome, I've learned both from listening to my own
body and from reading about post-polio syndrome that my arm didn't get polio.
I got polio.  And it affected nearly every part of my body.

Now my left arm is so weak that most of the time I must wear a brace to
support it, I can no longer walk long distances, my neck is weak. Sometimes
it seems like even my most important organ, my brain, is getting flabby too!
In many ways, I'm simply old before my time. The constant fatigue, pain, and
inability to do things that I once took for granted often challenge my
emotional life as well. There are times I don't think I can face another day,
at least not while I'm still saddled with these ugly feelings. My new
feelings of fear, anger, guilt, sorrow, and envy are, in and of themselves, a
major challenge. I don't like my new feelings, any more than I like my new
physical limitations. I sometimes feel like a grocery bag just overflowing
with emotional garbage.

As you yourselves no doubt are already experiencing, aging magnifies
challenges in relationships as well. I am grateful, now that I am no longer
able to work, for more time, more time to spend with people, but my constant
fatigue and pain often prevent me from realizing and taking advantage of
those opportunities for new relationships. In addition, my physical
limitations often prevent me from doing the activities that people usually do
together when they are out having a good time. So that's why I say my social
life is in the slow lane.  As for the financial side of my story, I just wish
I could say that aging magnifies my income! Not only has my capacity for
earning been decimated, but my expenses have gone up dramatically, too. Money
I would like to spend on small luxuries now must go to hire people to clean
my home, to do my laundry, or to make a meat loaf. You might say that I am no
longer troubled by pretensions of being a Yuppie.

I need to be careful not to let the combination of all these challenges
deliver a mighty assault on my self-identity (I can no longer be a full-time
art historian). Well, on what should I focus my self-identity? On my skill at
needlework or my ability to always "be there" for my friends? Even those
things are now beyond my power. Now that I am so limited in what I can do,
who am I to be? Am I, in the poignant words of Michigan polio survivor Sonny
Roller, am I just a "crippled cripple"?

Marshalling Personal Resources

Finally, aging with a disability has at times magnified deep spiritual
issues. Why me? Why should I be one of the ones to experience all this new
loss on top of existing loss? What is the purpose? Is there any purpose? If a
cosmic donation of suffering is being collected, don't you dare knock on my
front door. I already gave at the office. Don't ask me a second time.  It's a
tremendous challenge not to lose faith, not to be bitter.

So much for some of the challenges in my story and, I suspect, in yours. What
about meeting those challenges? To live as fully as possible as I age with a
disability will be the most demanding work of my life. Recuperating from the
acute phase of polio, being mainstreamed into an able-bodied society, getting
an advanced college degree, working in the academic world -- none of these
things demanded as much of my whole person as what I face now -- aging with a
disability. That's where my earlier lessons from magnifying glasses can be of
help.

First of all, I've learned to be Sherlock Holmes, searching for every scrap
of medical information that I can put my hands on which might magnify my
well-being. That means, for me, being a participant in the Rancho Los Amigos
Post-Polio Support Group, subscribing to newsletters from other polio support
groups, reading articles in medical journals, keeping my ear open for
breakthroughs in other neuromuscular diseases which might help me later in my
life, if not today. I don't know how many of you saw today's issue of USA
Today but on the front page is an article, "Treatment for MS, A Giant Step."
And so I read that, rejoicing not only for those people but thinking in the
back of my mind, maybe there's something there for us polio survivors.  I
have also learned that the cool detachment of a biologist, which I scorned as
a young person, can actually be of help to me. As I listen to my body's new
distress signals, it does not pay to over-react. Wild emotions just add more
fatigue to my already overworked body. Besides, if I can view without
blinking what often seems like the harsh reality of gradual decline, my
intellect will still be able to function and help me meet the challenges that
lie ahead.

But compassion has its role in my arsenal as well. Not only compassion toward
those around me who are affected by my new decline but also for myself. When
I give myself permission to feel my new grocery bag of feelings, to be less
than the perfect homemaker, or friend, or Christian, I am often enabled to
feel differently and to actually be better.
  
Humor is one of my favorite resources because it is so tough and hardy and
resilient and because it often shows things in a totally different
perspective. One thing that I really enjoy when I become so exasperated with
my old clunker of a body is to pull out from my drawer a little button I
bought once in a stationery store. It makes me giggle. It lifts my mood. It
says, "My other body is in the shop."

In the dark moments when I wrestle with my identity and whether I have become
just a crippled cripple, I am comforted by the lens of authenticity. It
prompts me to look deep inside myself. It is there that I can see beyond the
issue of my disability and truly know that I myself am a work of art that was
once created -- and still remains -- infinitely more than just a crippled
cripple.

But the resources of curiosity, equanimity, compassion, authenticity, and
even humor are insufficient for me without adding the additional source of
wonder. There have been times in this course of post-polio syndrome when I
have been so devastated that nothing in the entire world seemed wonderful.
By working at wonder, by disciplining myself to concentrate on the softness
of rose petals, or the aching beauty of a flute concerto, or the familiarity
of a Vermeer painting that I long have loved, by concentrating on these
things, I have found that wonder worked its way in me. I could again begin to
see the whole of my life. I could see that I have been greatly loved, that I
have had many opportunities to learn and to feel, that I have been able to
work, to marry, to travel, and that I remain, at least for now, a
middle-class American, which means, among other things, that I have one
fabulous privilege that many people in the world long for -- indoor plumbing.
By working at noticing the wonder of my world, I again am enabled to feel
wonderful myself.

__________________


My Stroke of Luck

Gottlieb: My first mistake of the day -- following that lady [Patti]!

I have written out the first part of my talk because the "right hemi" [a
person with right CVA] just goes crazy if you give him a chance. My problem
for several weeks now has been to figure out a way to inform some of you
about the very special kinds of loss which may result from a right hemisphere
stroke without having it sound like a medical laundry list. I decided to tell
you a true story about one of my early encounters with a doctor, a doctor who
needed to be educated.

Early Encounters with Doctors

My right hemisphere hemorrhagic stroke, which occurred on January 28, 1982 at
about 9:23 in the morning, left me in such a confused state of mind, I could
no longer be an attorney (no attorney jokes). I applied for early payment of
Social Security benefits based on my being too disabled to work again. The
reviewing neurologist was a favorite in the government's stable of disability
examiners. Why? Because he was waiting to take his boards. He needed the
money badly, and therefore could be trusted to certify everyone he examined
to be fit for work. He was in a different, borrowed medical office every
weekend, and hired someone to type his dictated tape-recorded notes. I'll
call him Dr. Descartes, because his reports always ended with a statement so
similar to the philosopher's "I think, therefore And so, for now, this
concludes my progress report on how I meet the challenges of aging with a
disability. I offer it as my gift to you in hopes that in it, you not only
heard some of your own story, but that you get a better focus on some of the
tools you can use to magnify your own well-being. You undoubtedly know and
will soon learn more tools than just these that I mentioned here today. I
look forward to hearing someday your progress report on how you meet the
challenges of aging with a disability.  Thank you.








I am." "Mr. So-and-so is breathing, therefore he is
employable." Or "Mrs. So-and-so can still blink her eyes,
therefore she is employable." And so on and so on. After
giving me a thorough neurological examination, about 30
seconds' worth, Dr. Descartes decided to dictate into his tape
recorder that I was fit for work. The early paralysis of my
entire left side was gone; ergo, I could resume being a
lawyer. Sadly, the dear man didn't know his right hemisphere
from a hole in the ground. (I had something else in mind
there, but I won't say it.)

I had studied about the disturbances which could occur when
one had a stroke, especially the problems associated with the
right hemisphere, because I had to know why I was behaving so
strangely and driving my wife crazy. So I decided to test him
and have some fun at the same time. "Tell me, Dr. Descartes,
why is it I cry all the time?" "Because you had a stroke when
you were so young and you are depressed." "Ah, thank you,
doctor." "And tell me why is it by midday every day I'm so
tired I need to go to sleep for at least an hour?" "That
definitely is depression." 

"And what is it which causes me to misinterpret my wife's
facial or vocal expressions so that I fight with her every
day?" "That too is depression." "I don't believe what others
tell me, I overestimate my ability, I have trouble solving
problems, I get lost all the time, I can't remember things, I
can't balance a checkbook." 


"Depression, depression, depression, depression, every one of
them." "Well, is it also depression when I act inappropriately
in social situations?" "Hm, yes. I believe that too may be
depression." "How about my constant babbling without making
any sense whatsoever?" "Could be depression." 

"And how about my putting my pants on where my shirt belongs
or my shirt where my pants should go and not being able to
find my left arm and leg?" "Let's see, I believe those
possibly are related to depression also." "Thank God," I said,
"I can't wait to tell my doctor that you have discovered the
answer to all of my problems. Perhaps you have heard of him.
He's a very famous neurologist -- Dr. Smith." "Is that Dr. John
Smith?" Descartes said a little warily. "Yes, he's the one who
is the head of the certification board for neurology in this
county." "Oh, my God," he said, "I'm beginning to feel a
little depressed."  

I know what that feeling is, doctor.  It's known as the first
sign of medical humility. 

Well, that's the laundry list. Now a few words about how some
of that laundry can be ironed out so we can get through the
rest of our lives fitting in rather than being bent out of
shape. My wife said I needed a good segue.  

The Whole Grab Bag of Stroke Disability  

Communication disturbance; it is written up in the book so I
won't repeat the words. But I'll give you a good example. Part
of the disturbance is just talking too damn much and not
making any sense whatsoever. Attorney joke, right? But a good
example of that is in our stroke support group, where Lenny,
who is a left hemisphere strokee or stroke survivor, which
means he had language problems, and I with a right hemisphere
stroke, which means I had a lot of other problems --  you've
heard the laundry list -- were very very close. And Mel started
talking. Well, Mel was a right hemisphere and he babbled like
crazy and never made a bit of sense. One day, after Mel had
gone on for about six or seven minutes, Lenny turned to me and
said, "Do you understand what he is saying?" And I said,
"Every word."  

But the problem that the right hemies have is when you are
talking to a good friend and the eyes of the friend begin to
glaze over. And all of a sudden, the friend looks at his watch
and says, "Oh my God, I've got to make that appointment. See
you, Art." And then you realize that you really need to be
very conscious of the fact that you've got a little hole here
somewhere [pointing to the head], that makes the mouth go too
much; so your eyes have to help that hole.  

Then there are interpretation problems, and I really mean
that. The old joke about you get up in the morning, and your
wife says, "Good morning." And you look at her and you say,
"What the hell did you mean by that?" It's not a joke, it's
true. I see some heads nodding. Those are all people who are
familiar with stroke survivor problems, especially the right
hemisphere. So what do you do? It's been tough. For eleven
years Shirle has had to put up with my idiocy, in terms of
constantly misinterpreting what she says. And what she says is
almost always for my own good, almost.  

Then there is the simple problem of overestimating your
abilities. For those of you who have heard this, I'll repeat
it anyway. For the first year that I spent with the United
Stroke Foundation in a stroke support group, as a right
hemisphere, I thought I was being the greatest help in the
world to everyone else until the end of the year, when the
leader of the group walked up, patted me on the back, and
said, "Art, you are doing so much better."  

Then I have listed the whole terrifying grab bag of stroke
disability. Depression, fatigue, lability (that's easy
crying), selfishness, anger, frustration, paralysis,
paresthesia, aphasia; a tremendous number of problems. I was
very lucky, I came off without motor loss. All the loss is
here [pointing to his head].  

But just to give you an example of what can occur, especially
in a stroke support group, the love that can pass around the
group, I'll tell you about Al and Bob. Bob I call 4-5 because
four and five are the only words he has. Four-five, four-five,
four-five. That's all he has except for the curse words which
are a part of every stroke survivor's vocabulary, even those
who have no 


language whatsoever, and I won't use those here. At any rate,
one day Bob was talking and he said "four-five-six." And Al,
with all the love and the humor that we all need and we learn,
ran across the room, grabbed Bob's hand and said, "Bob,
congratulations. You just increased your vocabulary by one
third." And, at first, Bob was 


__________________



Plenary #3.  Aging While Disabled:  
      Personal Perspectives

      Under the Magnifying Glass

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Register C (1987). Living with a chronic illness:  Days of
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Strong M (1988). For the well spouse of the chronically ill.
Boston: Little, Brown & Co.

      My Stroke of Luck

Be stroke smart. Newsletter of the National Stroke
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