CODI: Cornucopia of Disability Information

Integrating New Physical Realities with Old Self Definitions

Integrating New Physical Realities with Old Self Definitions:
A Challenge for Survivors

Karen Donovan, M.S.W.
Therapist; Polio Survivor

with the assistance of 

Casey Patelski
Polio Survivor
Leader, Anaheim Post Polio Support Group

__________________


Donovan: Let me tell you a little bit about myself first. I'm a
clinical social worker in private practice as a psychotherapist in
Westwood. I see people with disabilities almost exclusively in my
practice. I've had polio since I was four and a half. For most of my
life, I was one of those people who "passed" and did not want to
identify as a person with a disability. I would say it's been only in
the last 15 years, with my own personal work on myself and being
involved with the Independent Living Movement, that I have come to
identify myself as disabled. Since then, I have immersed myself in
disability issues, particularly in the mental health field. I might
have some things to say that will be controversial. I have a strong
bias about the traditional mental health worker, which you'll hear
about. Casey Patelski will be assisting me today. Casey, why don't you
tell us about yourself?

Patelski: I'm a recent post-polio syndrome person. I had polio about
45 years ago, in 1946, and made pretty much a full recovery except for
one leg that's had a full leg brace. I graduated from the university,
became an engineer and did very well, never once letting it slow me
down. In fact, people never realized I was walking around with a full
leg brace, because I never showed any fatigue. Back in 1985, I was
working as an engineer in the oil fields of Arabia, out in a 120 degree
desert, walking in the sand. The engineers I was working with were
laying out a pipeline across the desert. They said, "Casey, we gotta
slow down, we're getting tired." I said, "Hey, I got the bad leg; when
I get tired, you'll get tired."

Well, I pushed all my life. It was only about 10 years ago that I
started having a little trouble. I had no canes then, no external
support except one leg brace. I'd go on a business trip with a
briefcase in one hand, suitcase in the other, step up to the curb,
walk in the parking lot, go out to the airplane, get on, no problem.
All of a sudden I had a little trouble getting up to a curb. So I went
to the doctor. "You've got no problem; you're just getting older. You
need to start exercising. We at the company here have an executive
physical fitness gym, so I suggest you build up your legs." The doctor
prescribed a set of weight-lifting exercises for my leg plus riding
the exercycle, walking at night very fast and building up a good
sweat.

Furthermore, he said, I ought to start walking up twelve flights to my
office. So I not only did that, but eventually I went two steps at a
time up to the twelfth floor. The more I did this, the weaker I was
getting. Nothing had come up about post-polio. Finally, someone
suggested that maybe I ought to think about the polio effects. My
wife's sister was a nurse, and through her I got to see Dr. Perry. She
immediately diagnosed the problem as post-polio syndrome. But I didn't
slow down one bit.

Then it happened. I was launching a rocket out of Cape Canaveral. When
I got out there, I could walk to the launch pad, climb up, and get
back down again. But by the second week, I could hardly walk out
there. By the end of the month, when we finally launched the rocket
and I came back home, I couldn't walk at all. I was in total pain.
The doctor said, "You've been overdoing; take a couple of weeks off."
Six months later I was in the wheelchair. I went from almost no
problem walking to a wheelchair within six months. That was a total
surprise to me and everybody else. In this last two-year period that I
have been in a wheelchair, I have learned a lot about disabilities and
about not realizing that this could happen to you.

Donovan: Casey's story speaks so well to what June Kailes was talking
about at lunch, that we need to be out there, and we need to be out
there now, spreading the word about the long-term effects of
disability. You got wrong information, and I got wrong information,
and it's affecting us, and much worse than if someone who was
enlightened had been out there like these doctors that we're seeing
here at the conference.

I was very much touched by what June was saying about the young
people. I feel the same thing when I see young people thinking it is
so wonderful to be standing and walking. Yes, that's true, but the
problem is that society has pushed these myths about standing and
walking on all of us, and we have exerted ourselves to the point where
now most of us are in wheelchairs way ahead of our time. I too was
pushed and I talked just like Casey, proud: I can climb Mt. Everest
with one crutch. Everything was about the pride I had in overcoming,
and it's taken its toll on my body. I think we bought into something
that hasn't served us at all well.

Formal Presentation

So let me start with my formal presentation, but don't worry about
interrupting. How many of you are really new to disability? I mean in
terms of an initial recovery with very little disability, but now your
residual capacity is wearing out, leaving you with significant
disabilities traceable to polio.

A woman: On the good side or the polio side? My good side never gave
me trouble, it bore all the brunt.

Aha, I see. Maynard, who spoke this morning, has a wonderful paper out
about the different kinds of polio survivors. He has broken them down
into three groups: passers, minimizers, and identifiers (for
reference, see Maynard, 1989, under Plenary #8). In my work with
people with disability, they are very different. When I have someone
in my office who has been disabled and has not been able to do as much
as he would want to, and has been identified with polio all his life,
he is a different breed than the one who has felt all along that he
could do everything but is now having to wear a brace or get into a
wheelchair.

Whether the experience of illness with polio was just a blip in your
memory, or a traumatic event, or somewhere in between, it had some
role in shaping your personality. For most of us, the illness and
subsequent rehabilitation brought us in contact with medical personnel
and institutions that, to put it mildly, were not tolerant or
understanding of the psychology of children. We don't need to go into
the war storiesÄthe hospitalization, what a role it played in our
emotional make-up. Did a lot of you have to go through
hospitalizations? Long-term ones probably?

Patelski: I had a great experience. I was in the hospital at 18 years
old; it turns out all the student nurses were also 18 years old. So I
got one hell of a lot of special attention from the gals.

Well, most of us were hit earlier in life. These war stories are
familiar to all of us. There was and had to be a varying degree of
relinquishment of our autonomy. We were made to feel that expression
of our individuality through words like "I don't want that surgery in
the summer" or "Why three times a week physical therapy?" was an act
of betrayal against our parents and doctors. To be accepted, even
loved, required that we give up our own personal freedom. Even in the
most benign situations, there was awareness of how much was being
sacrificed for you, financially, physically, and emotionally.

How many of my clients speak about the parent who felt so bad, so
tired, so sad; the word burden is so often heard in my office.
Everything called for you to conform; it was a matter of psychic
survival. The goals of the medical profession, the parents, were, if
you had a full brace, that you get to the half brace; if you had the
half brace, that you walk; that you get rid of the crutches. Their
goals became our goals. We were children, and we knew of no other way
of surviving. To rebel, to complain, brought only reprimand; you
weren't treated very well by the nurses. You were left in rooms with
no bedpans; things like that. Now dependency could have had profound
effects on the emotional life of the person. Recovery was all about
rejoining the mainstream. That was the goal.

Now I'm not saying that all this was bad. All of us here are a
testament to what we achieved by this effort by our parents and
doctors. But I want to talk about what we might have given up along
the way. We learned to deal with all these impingements, but by
denying or pushing down our own needs.

Having experienced the vulnerability, the helplessness and even the
terror made worse by environmental impingement, we needed to
experience our wishes and needs for dependency. The toddler, the young
child constantly testing out his capacity for independence, aggresses
against people, the environment, and then withdraws and demands
protection, holding, love. In this way, he is trying to achieve a
sense of who he is, of realness, and a good enough mother will get a
feel for what a child wants and needs and respond to that person's
instinctual life.

The child who got polio early, from zero to age four, was especially
vulnerableÄeven those who weren't hospitalized.  While everyone
else was playing outdoors, there was physical therapy for us, or there
was rehab. Maybe Mom didn't know how to be very creative about putting
you out there in the sand box to play, and then picking you up after
the play was over.

Our Dependency Needs Were Suppressed

We didn't really get a chance to know who we were. We took on the
wishes of others and suppressed our personal needs and emotions.
Having personal needs became a sign of weakness. To avoid the feelings
of powerlessness, experienced because of the early loss of our body
integrity, people with polio often express a strong need to be in
control and a fear that any relinquishment of that control will bring
them to a complete stop, and will bring rejection by others.

Now, you might be saying, "But this is a very young age."  However,
you can take it along the developmental level, zero to four, or you
can take it into an older child level. It has different effects, but
there is still the inability to feel, to give voice to emotion, and to
feel free about who we are.  The people that I have seen often speak
to this need to overcompensate, to be constantly busy. Activity
replaces thought; thought is frightening and scary. Parents would
often say, "If you keep working, the brace will come off." But all
talk of how we felt was pushed down. When people come to my office,
they don't know how to express these feelings; they think they're
feeling sorry for themselves. They think, "I'm not doing enough." In
Dr. Campbell's presentation she reports that those who had polio
earlier in life and more severely have a higher incidence of
depression. She attributes it to the fact that those people are now in
their 40s and struggling with career and children and life crises. And
I'm sure that is true.  But I think that depression has been there all
along.

You take the zero to four-year-old child; it's the time when a child
attaches, learns to separate, learns to know it's OK to separate. Most
of them had a disruption in bonding with their moms because they were
so severely disabled, so they were hospitalized longer and there were
more impingements. By impingements I mean not just surgeries; I'm
talking about medical personnel, parents, all kinds of things that
disrupt the feeling that you're OK. With a severely disabled child in
the most important years of development there can be some really tough
times. The overcompensation, the activity is always there to keep from
dealing with the underlying depression.
 
When Old Feelings Return

Now take what's happening to all of us, even myself. I don't think I
have PPS, but I'm certainly tireder than I used to be and I have this
wheelchair to help me get around, and to carry things. With the new
disabling situation, the new pain, all of these things get
reactivated. Those old feelings comes back.  But we're in a different
climate now. We know about advocacy groups, we know about activism, we
have support groups, we can call up lots of people and they know what
we're talking about.  The groups help so much. Being in the disability
rights movement, I have found, is very, very empowering.

But there is still some difficulty in dealing with feelings of
failure, of inadequacy. I see people being able to express themselves
very easily in groups like this. But I find in my practice that it's
more difficult; or that there is some difficulty with the
relationships at home. My central thesis is that our own discomfort
with our dependency and needs makes it hard for us to be interactive
with others. I'm talking about the difficulties of the emotionally
dependent.  Dependency is an important thing in intimacy. If you can't
be interrelated, it's hard to feel intimate or close. That's still a
struggle for some of us. This emphasis that we put on autonomy and
self-sufficiency makes it hard to rely on the other people in our
livesÄfriends, spouses, children. So much of what we learned from
society we just took in and didn't work it through so as to make it
our own. We just kind of accepted it and tried to be as normal as
possible, get that college degree, get that job, get that husband, get
that wife, whatever.

But there is a sense I have about some people who come to me that they
don't feel very real inside, although I'm sure it's not representative
of the entire polio population. Realness comes from the ability to
feel, to bang up against others, to find out who we are and not have
it thrown on us. I think that therapy helps a great deal in finding
that realness, that genuineness, that part that says, "I hate this.  I
really don't want any more of this."

Participant: I didn't get polio until I was 21. [At Kaiser] there were
quite a few of us. One woman that got it was 45.

It is different when you are older. But the message was still the
same, wasn't it? That you had to return to normalcy, and not to would
feel like failure. So many people say that there was an expectation
put on them to get better. If you just did more physical therapy,
maybe you'd get better. I think that behavior can act as a cover-up
for painful feelings. Doing takes the place of feelings, which are
scary. And it can be difficult if you don't have an acceptance of
feelings; if you're not convinced that you won't die, you'll make it
through.

A woman: A mask is put on from the time you had the polio and you
never take it off.

A participant with cerebral palsy: For 24 years I did all the right
things. I went to college, graduated summa cum laude, and was ready to
start my career . . and they said, "You need one more surgery." Well,
that was four years ago and I've had 37 surgeries now and I am no
longer walking. Now I'm fighting to get back in and my doctors keep
saying, "Let's just take off the leg and we'll teach you how to use an
artificial leg."  They push you from one surgery to another.

The medical profession is pushing on her different kinds of procedures
and she's not feeling that she has a voice in it.  We have to learn
that it's OK to say, "Whoa, no more, thank you, no more!" But it's
hard to know that you have that right.

Woman with cerebral palsy: Yes, you say to yourself that the doctor
has more training; you do what he says.  Maybe I did myself a
disservice.

Patelski: Well, you very well could have.  When I was 19 or 20, my
right leg started getting weak, so they recommended surgery. They were
going to strengthen my knee by a muscle transplant, transplant the
hamstrings from the back of my leg to the front of my leg. When I was
in the first year of college, I didn't use any braces, just had a weak
polio leg. But after that surgery, I had to go to a full leg brace,
and it's been giving me problems ever since. The worst problem with
that leg is in my mind. I have to pull it back to make the leg step
forward. I walk backwards with one leg and forward with the other.
It's a heck of a thing to get used to.

Participant: I really identify with what you said about the feelings.
I had always considered myself a person who could not show feelings .
. .

Participant: I'm a physical therapist and I work in the gerontology
service at Rancho. I call myself a patient advocate and a lot of
people don't like me for that. But Dr.  Mosqueda, who heads the
gerontology services, says, "You can't do anything without the
patient's consent." So now we ask, and the patient must agreeÄ to
be transferred, to be discharged early, not to be discharged. But I am
concerned that many times a decision is being made and the patient has
no idea what is going on. And it's very upsetting when someone is
trying to be a patient advocate while everybody else is thinking about
reimbursement and policy and laws.  Patelski: Maybe we ought to have a
group of people with similar problems in consultation with that
patient when the doctor recommends a certain type of surgery. Maybe
they'll support that surgery or say, "I'm not so sure you ought to
have it, having had the same problem myself."

Participant: I'm a nurse from Arizona. We've had just terrible horror
stories with post-polio people who have had operations,
anesthesiologists that aren't aware, etc. So just as a precautionary
measure, if you have to have surgery, make sure the professionals are
well aware that you are post-polio.

If you could go to someone like [Dr.] Ken Brummel-Smith, you would
realize this is what you've wanted all your life. But why have we gone
this long and had such trouble with being comfortable speaking up for
ourselves?

Participant: After being an arthritic for about a year and in the
hospital for two years, I learned very quickly that if you put a smile
on your face, everybody loves you and you are accepted. If you
complain about pain or fatigue, people aren't as apt to pay attention
to you and take care of you. Each of us perhaps learned to put on a
smile in the morning. And we've paid for it.

Other participants described earlier pressures on them to keep smiling
and not to feel sorry for themselves.

Participant: I have found out doctors will listen to you more if you
mention muscle atrophy. Some doctors do not recognize post-polio
syndrome, but they cannot deny muscle atrophy.

Another thing all of us should do is return to our doctors with every
piece of information we get and insist that they know what they are
doing.

Patelski: Remember most of the doctors went to medical school after
the Salk vaccine came into use. None of them really have had any polio
patients. And now they're seeing this post-polio syndrome; they don't
know what it is because it's not in the books. They'll diagnose you
for something else other than post-polio muscle atrophy; I like that
better than post-polio syndrome, by the way. You have to make them
aware of it. If they don't understand, go someplace else.

Most polio patients know more about polio and its problems than most
doctors do. You've got to let them know that. In our support group we
are trying to get a list of family doctors or orthopedists that we can
be comfortable with who at least know how to spell the word polio; you
can converse with them. I finally got my family doctor educated about
polio; he's very sympathetic, and now he has four or five of us
post-polio patients. He had none before me.

A woman: I'm wondering about the polio survivors . . . is it that they
don't have the feelings or that they are so deeply repressed that they
can't come out?

I think the latter, definitely.  The feelings are there but they are
really pushed down. This hard shell that a lot of people with polio
have makes it very difficult to take in other people's concern and
caring. And the more vulnerable part: we are so defended against
feeling. Most people with polio are terrifically independent, except
in terms of their medical world. In that world, they just say, "Here
we are, do what you want."

But in every other area, their strength of independence makes it
difficult for people to get close.  In my limited sample, the person
with disability has trouble speaking to a partner or close friend
about these issues. They are often heard to say, "Why doesn't he know
what I need?" Well, how is he supposed to know? There is difficulty in
saying, "I need you to do this for me," because it's an acknowledgment
of not being totally independent.

One of the stories I tell is about a couple who lived in a
condominium. The husband would always go down and get the mail and one
day he said, "I don't like having to go downstairs and get the mail."
And the wife said, "I can get the mail. I just don't want to get the
mail." The wife really had a lot of difficulty getting down the
stairs. But, as the disabled person, what the wife wanted was for the
non-disabled person to collude.

Such a collusion often goes on, because the person with the disability
has trouble saying, "I need help with this." And what happens is
communication breaks down and people get into roles. The non-disabled
partner picks up so much of the work, the world out there thinks he is
a saint for putting up with the disabled person. But he has a great
deal of resentment.  There is great difficulty asking, needing,
depending. And when the disabled person does try to communicate, it
sometimes backfires. She might say to her friend, "I can't go on that
trip because my back won't handle the car ride." And she might find
herself slowly losing friends and feeling more isolated.


Participant: I have three brothers.  We were very much into
basketball. But then I remember I started getting tired, and shaky. I
decided to tell them, and as soon as I did, they said, "Come on,
you're gonna do it." They made me feel like I'm just feeling sorry for
myself, like it's me and not the polio. I didn't know what was going
on. I started thinking, what the heck.  If they don't understand and
if they can't accept it . . .

You're experiencing rejection from your best friends. These guys have
been your best friends, these brothers of yours.  Something has
happened and you're feeling more of the sadness.

Participant: I don't know if it's anger or what, I just want to . . .

Another woman: That's what I was feeling, too, the anger and the
isolation. I worked for the airlines for 30 years, did lots of
traveling, and I was just as good as anybody else even though I used a
cane or crutch. I had post-polio syndrome probably at least 13 years,
but it started out very mild and was not identified until about seven
years ago. I have noticed since then that I haven't been as completely
independent and capable as I used to be; that I have fewer and fewer
friends.  I find I isolate myself more.

I started taking psychology classes in college at night, trying to
figure out what was wrong with me. I also went into psychotherapy, but
we never touched on the fact that my main problem was I had never
accepted my disability. Even though I've always worn some sort of
brace and used at least one cane, I never really considered myself to
have a disability because I was able to keep up with everybody.

Now I'm going through the hardest thing of all because the doctor has
just told me to stop working. And I'm trying to figure out what am I
going to do with my life. I've always had control over my surgeries to
some extent. From the time I was in my early 20s, I have taken charge
of my life, my well-being. But for the first time in a long, long
time, in the last month, I've been out of control of myself. Because I
know nothing about how to become unemployed. . . . . But I'm feeling
much better now because I am taking charge again.

Discussion about being positive followed.

Patelski: I just made a presentation to the Senate Investigating
Committee on Labor and Human Resources. The lawyers and one of the
senators came over and apologized for bringing me all the way to
Washington, D.C. in my wheelchair, and requiring me to go up to the
witness table under TV cameras to testify for health insurance for
retirees.  Afterwards I said, "Don't feel sorry for me, if it wasn't
for the wheelchair, I wouldn't be here. I'd be back home working.
Look at the opportunity I've got." I was able to get to Washington, I
got to see the Senators, got invited to the White House. I looked at
the positive side. All they did was feel sorry for me, a negative; I'm
in a wheelchair, I have problems. But I enjoyed it. It was a hell of a
good experience.

A man: You've placed a great deal of emphasis on how important it is
to connect up with a caregiver. But I think we've been conditioned by
society to look on M.D.'s as God's chosen children. As this lady says,
if you're mad at the doctor, go out and get another one. That's easy
said, not so easy done. To get the doctors to open their ears and
understand would be very helpful to many of us. But to tell a doctor
off, you've got to have a lot of guts. We need guidance on how to deal
with our medical professionals.

Participant: It took me three and a half years to get Social Security
disability.

Another woman: I'm going to do it in five months, I've made up my
mind.

Patelski: Let me tell you about that. In their Social Security medical
book is a definition of post-polio syndrome.  You need to get a
photocopy of that two-page definition. If you don't have it, you can
get a copy from our support group.  There's another article, "Polio
Strikes Back," and a third article about the revenge of polio. I put
all three of them together and stapled them with my form. When they
see a page out of their own Social Security handbook, they can hardly
argue that you don't have any disability. There's a definite
description of the post-polio syndrome, not just polio, but the
syndrome itself. And there's another article or two on the effects of
post-polio syndrome we can give you.

A woman: I'd like you to talk about when our own family members, our
own friends, or those close to us can't accept what's happening and
how that makes us feel.

It's very hard when your family has admired you for your courage, and
when they find that you're not functioning as you used to, they often
make comments like, "Where is the courage?" "You used to have that
great attitude." There's no simple solution but I think it gets easier
when you can begin to feel OK with your own limitations. I think for
some of you, there is still a lot of trouble talking about what's
going on with you.

A participant asked how to deal with comments from others with greater
disabilities who implied that she shouldn't complain.

This speaks to what I was saying. People with polio with disability
have internalized those standards that haven't been wiped out, so
they're hard on you because they don't think you have it as hard as
they do. They're saying to you, "Why are you complaining?" Well,
that's what they were asked when they had braces. They're passing it
on. We need a major change in our value system, in our belief system,
in our attitude system. That's a hard one.

Participant: I always looked normal, but I was always tired and had
some limitations. When I finally found out what was wrong with me,
after slowing down for a period of years, I had a tremendous feeling
of relief. I wonder if other people experienced that. It took away a
huge amount of stress.

Now you have something. Sorry, we don't have time to discuss that --
we have to break.