KNEES AND
HANDS, THE LIFE-LONG GIFT
There's a misconception in this country, that every ill or disabled
person receives the help and services they need to either improve
their condition or to support them as they live with their condition. As I discuss in the section on home care services,
good in-home care for the ill and disabled is badly lacking in the United
States, especially for those under 65 years of age. Here I'd like to
introduce readers to the realities of living in daily pain, with
disability and illness and especially when a person has no family or
lives alone. But first, let me tell you a story from my
childhood.
|
The Cripple With the Hand-held Metal
|
|
There was a man who lived in my city when I was a child: I
remember seeing him the first time when I was about 8 years
old. I was running an errand uptown with my dad, which
was rare in my family.. We walked from the corner midway down
the block to the G. C. Murphy Co. and as my dad opened the
door, out came who I thought at first was a midget! But
I very quickly realized this man was no midget. He was
crouched so low to the ground that his bottom almost scuffed
along the sidewalk. The trouser material of his left leg
was folder over neatly, over and over, and pinned tightly
against the stump above his knee. His other leg was bent
under his body, in a low crouch. On both hands he wore
men's gray work gloves with the fingers sticking out of the
cut material (in winter he wore heavier gloves but always with
the fingers of the gloves cut off). In his right hand he
held the handle of a flat-square piece of steel (it looked
similar to the trowels my dad used in working with cement,
except the metal piece was square instead of
rectangular. The handle was wrapped again and again with
heavy silver tape to hold what looked like a hand towel (or
wash cloths) that had been wrapped around the
handle. He slid the flat metal in front of him on
the sidewalk, then pushed his body with his bent-up leg in one
motion as he swung his stump forward over the metal plate he
used to balance himself. And, on down the street he
moved. He carried a coffee can and would position
himself in front of the bus stop on the main corner uptown,
and every day pedestrians would drop coins or dollar bills
into his can.
I remember overhearing on the street that he was a war
veteran who had lost his leg in World War II. But there
seemed to be disagreement among those talking: Some said he
had to make a living because he could do nothing else but ask
for donations with his disability, while others said he was
just a panhandler. Those folks speculated that he could
easily put on a prosthesis and walk normally -- IF he wanted
to! In winter, he carried a small padded board on wheels
that reminded me of the low carts car mechanics laid on to
push themselves under cars. He'd sit on the padded cart,
and with the flat metal square in one hand, he'd push himself
along sidewalk areas that had the snow shoveled.
By high school, I rode the city bus to school each day,
sometimes riding uptown first so I could look at the store
displays before walking the 3 blocks back to school. And
somedays I'd stop at a restaurant for hot chocolate before the
first class. I re-met the crippled man on my high school
bus trips, waiting as he turned with his back to the bus then
lifted his bottom from the street to the first step of the
bus, then up two more steps to the floor of the bus.
With strong arms he'd lift himself to a front seat, the only
time I saw how he would look at full height if he was not
disabled and basically crawling along the ground. His
face was leathery and wrinkled from exposure to all kinds of
weather during his daily travels to his uptown location.
He had a habit of chewing tobacco, with one cheek puffed
slightly. Extremely quiet, I never heard him engage in
conversation, except to nod and say thank-you when anyone
placed money in his can.
I last saw him when I was about 17, before I graduated from
school. I don't know what happened to him because I
simply wasn't uptown much after I graduated school. But I often
thought about him, and wondered about his life.
Where did he live? Did he have a wife and family? How
many years had he spent coming uptown to sit in front of the
bus stop? What was his story? And I must admit,
from time to time I had wondered if the rumors were true and
if he only crouched down "like a cripple" when in
public but used a prosthesis when at home? As a
normal-bodied person and influenced by the rumors I'd heard
when younger, it just seemed so... inconceivable that anyone
would have to crouch and almost crawl to get places as this
man did.
The man would be dead by now. I regret I never knew
his name, or his life story.
|
Unfortunately, many people still live and get around like the crippled man from my
childhood.
I "met" a woman by telephone about 4 years ago who has
been mostly bedridden for the past 12 years. Her grown children
have homes and families of their own, and only visit sometimes.
She is married but her husband's work often takes him out of the home
for an entire week. Before her illness and pain started,
Molly and her husband had moved to a 2-floor townhouse in a suburb of
a rather large city in Ohio. The 2-story house posed no problems
then, since she was able to walk back then and stairs were no
problem.
But she started having trouble with her body, and was diagnosed
with dytonia. In the simplest of descriptions, dystonia could be
called a "the twisting spasm disease." The head/neck,
torso, arms/hands, legs/feet can be affected. The muscles go
into such intense spasms that the affected part is pulled and twisted
into abnormal positions, causing discomfort to pain, and making normal
life very, very difficult. For example, Molly spends most of her
time in bed, but her body can suddenly spasm and twist until her body
is flipped onto the floor! Side rails would only compound the
problem, since her upper body may twist one way and her hips and legs
might go the other direction! She rarely uses a chair now,
because her upper body often pulls her over, until her chest is
against her knees (and her head may be in any position depending on
which way her neck is twisted by the strong muscle spasms.
Torticolis patients whose disease mostly affects the head / neck,
often live with their neck twisted around to either side, never facing
the direction in which it should. Persons with dystonia
and torticolis often cannot use the traditional "assistive
devices" (canes, walkers, wheelchairs) because of the twistings
of the body: the assistive devices would be more an obstable in these
diseases!
Molly and I have had numerous discussions of how hard it is to live
in the "normal world," when nothing about a particular
disease is "normal." Probably the most touching
and most embarrassing discussion we had one day was when I asked her
to describe just HOW she manages to get around in her house every
day. She's alone almost all the time, until a daughter drops by
or when her husband is off work. Molly told how she slides off
the bed and crawls (or half-crawls, dragging her legs) to the
bathroom, pulls herself up just high enough to get her bottom onto the
toilet. Leaving the bathroom in the same way, she rests in the
hall for 30 minutes or so before tackling the stairs. Then, down
one step on her bottom, then two, three, stopping often to wait while
her legs go into spasms, pushing parts of her body against the wall on
one side and the rail on the other. Dis-entangling herself down
20 stairs is not an easy job, and the whole staircase takes almost an
hour after which she rests again at the bottom of the stairs.
Crawling to the kitchen, her tasks planned in advance, she grabs the
edges of countertops or drawers, using her arms to pull herself up
just long enough to reach high places. It's good that the refrigerator
door is low and her daughter re-arranged cupboards so much-needed
items are stored in the lower cabinets. She places things she
needs into two plastic store bags with handles and loops the handles
onto her wrists. Back in the living room, she reaches up for a throw
pillow from the couch and again rests on the floor at the bottom of
the stairs. When ready, she tosses the pillow back to the couch
and begins the long process of crawling back upstairs. The items in
her bags is enough muchies for two days so she won't have to do all
this tomorrow. Molly jokes that around her bed looks like a
mini-kitchen, mini-library, mini-office, mini-hospital room, and
mini-closet because of everything that has to be kept "within
easy reach." Outsiders, she said, just don't realize what a
struggle it is to just make sure you have the things nearby that one
needs in order to survive. I asked if she ever had service from
a "home care agency" but she said her husband makes too much
for government insurance and they have too little money to pay
out-of-pocket. So Molly at age 60, disabled and alone a lot of
days, must do what needs done, by crawling and pulling herself along
the floor!
I wonder how many doctors, nurses, social workers,
and the public in general realize that there are many, many people
today who CRAWL in their homes to get around because of disabilities?
It is a fact, a sad fact, about the care the disabled receive.
But no one considers asking about how a person manages
day-to-day. And it isn't something that a disabled person would
likely just bring up in a conversation. The comment of
"crawling like a dog" is an often-heard description by
"normal" people when talking about situations in which they
feel demeaned or suspect they would be ridiculed, and is a way to
communicate their embarrassment and state of emotions in the
situation.. "My boyfriend thinks I'll come back to him,
crawling like a dog, but he's so wrong!" "I won't
crawl like a dog for anyone!" The disabled who literally do
have to crawl in life to just survive live with the feeling of
humiliation and feeling degraded every day - because of their
disability. No, crawling to get food, water, to go to the
bathroom, or to take care of one's basic needs, is not something a
disabled person would bring up on their own or easily talk about to
any non-disabled person!
It is a fiercely independent person and one determined to survive
by whatever means who resorts to the only safe way to move around, by
crawling on the floor.
|
