"The best thing you can do in my humble opinion is something from home that doesn't tax you. I went through five stages of grief upon quitting my job about 15 years ago due to Post-Polio. For a while I tried part time work - taxing physically and emotionally. Now I write. It is something I always longed to do but didn't have the time for.... now I do and it has opened a new door for me. There will be a new door for you too. Meanwhile don't beat yourself up over what you can't do --- concentrate on what you CAN do."
HOW TO COPE
16734 - 8th NE
Seattle, WA 98155
Author of a series of books on coping with polio and disability from a layperson's point of view. Originally wrote LaVONNE'S COPING COLUMN for POLIO SURVIVORS NEWSLETTER OF THE PACIFIC NORTHWEST for 5 years (newsletter went out of print 3 years ago). The columns, plus new ones, are in the four books in the HOW TO COPE series. Available from the above address.
The set sells for $24.00 (US funds) plus postage or $7.00 each plus postage
$ 7.00 for 1 book
$12.00 for any 2 books
$19.00 for any 3 books
$24.00 for all 4 books
USA postage & handling $3.00 + Foreign orders $10.00 (QUANTITY discounts available)
VHS video of THE GIRL IN THE YELLOW DRESS also available.
|1||COPING WITH SHOES||1
|2||COPING WITH BRACES||4 *
|3||RED LETTER DAY||7
|10||ENERGY CONSERVATION -
The 24-hour Day
|11||PIT OF DEPRESSION||45
|12||SETTING OTHERS AT EASE||50
|13||HOLIDAY SHOPPING TIPS||56
|14||TIPS FROM OUR READERS||59
|15||OUR READER'S LETTERS
Practical Tips for Polio Survivors
Articles and tips on post polio survival tactics first appeared in The Polio Survivors Newsletter of the Pacific Northwest.
© 1989 by LaVonne Schoneman and published by ART Associates Seattle, Washington.
First printing April 1989
Second printing August 1989
HOW DOES LaVONNE COPE?
SUMMER SURVIVAL TIPS
A FUNNY STORY
CROCKPOT COOKING - Some Handi-Handicapped Cook cooking tips
DEALING WITH DENIAL*
A HANDY WHEELCHAIR IDEA
TWO WHEELCHAIR TIPS
A WHEELCHAIR STORY
WALKING WITH A WALKER
A VOCABULARY LESSON
TIP OF THE ICEBERG
THE GIANT JELLY BEAN CAPER
SUFFERING IN SILENCE
YOU ARE ABOUT TO ENTER THE TWILITE-ZONE
SUMMER SURVIVAL TIPS
DEALING WITH DENIAL
A LAUGH A DAY KEEPS THE DOCTOR AWAY
THE BUDDY SYSTEM
COOKING BY THE BUDDY SYSTEM*
MY 1991 REPORT
TIME FOR A CHANGE? (see pub)
WHATEVER HAPPENED TO POLIO?
-HOW TO DO TWO (or more) THINGS AT ONE TIME
-BASKET OF FLOWERS/BASKET OF PEOPLE
-CRIES FROM THE HEART
-STICKS & STONES
-DEVALUED and DISHONORED, Even in DEATH
-RETIRED? aka Doors
-SPRING FORWARD - FALL BACK
WHEELCHAIR ACCESSIBLE BLACKBERRY PATCH
FLATULENCE ISN'T FUNNY
-YAKIMA VALLEY PSG/SUNNSYIDE REPORT (p)
-AIDES TO DAILY LIVING (p) part 1 part 2
-WASH newspaper (reprint)
-Oregon/Metro PSG Newsletter (reprint)
This book is dedicated to my grandchildren...
|MICHELLE||-||Plastic Surgery (extensive ongoing facial-due to a hit
|BECKY||-||Hearing Impairment (75% loss)
|-||Open Heart Surgery
..for whom DISability is no stranger.
They are just a few of the OTHERS.
|1.||TIME FOR A CHANGE||1-6|
|2.||CAN WE ALL GET ALONG?||7-11|
|3.||The WINNER is||13-19|
|4.||BASKET OF FLOWERS||21-28|
|PART I - Wheelchairs|
|PART II - Helpful Info|
|7.||MEAN TO ME||52-54|
|8.||NOTES & TIPS||55-61|
Attending the Washington Polio Survivors Association seminar in Edmonds, in 1986 was a valuable experience for me.
You always hear people say: "where have all the good men/women gone" or "there just aren't any nice women/men around anymore". That is WRONG!
Never, have I met so many loving, caring, supportive spouses, children and friends. It was impossible NOT to notice all those good people.
First, there was the man who took me aside and quietly inquired where I'd gotten my brace "because his wife needed better bracing and although she'd given up and was enduring uncomfortable, ill-fitting ones she wasn't complaining." He was.
Or the daughter who caught my eyes over her mother's head as the mother said, "I don't need a better wheelchair, this one is just fine, and I'm doing fine". Meanwhile the daughter was shaking her head at me from behind her mother. She said, "no, mother, it isn't good enough". There was the wife who carried in her husband's oxygen tank or the friend who came along to help, drive, push a wheelchair or whatever. These folks are closely connected to the post polio survivor and sometimes see areas that could be improved more clearly than the person can him/herself.
Such a man is the subject of my little tale. The woman in his life had recently gotten caliper attachments to four pairs of shoes. He knew the opportunity for a choice in shoe color or style was terribly important to this lady who'd been his dancing partner for some years before the recurrence of the post polio symptoms. He'd held her when she cried in despair at the beginning of learning to use a brace and tirelessly devoted himself to ideas to make getting around easier for her.
All four caliper attachments were attached wrong - and each one was different from the other. A trip to the bracemaker had resulted in more tears when the brace man casually explained that this lady would get used to it - "learn to adjust". Our gentleman knew this wasn't so. A quarter inch turn of the allen screw to a pin or spring could mean the difference in walking or being thrown off balance.
Hadn't he joked that he'd "give her a solid gold allen wrench as a birthday present?
It took several weeks of study and accurate measurements to determine exactly how much each attachment was off. Finally he took the first shoe to work where he accessed the equipment needed to drill out the old copper rivet and reattach the caliper in the correct spot (in this case back 1/2 inch).
Success at last. Each shoe was patiently redone because each one required different measurements.
Why hadn't this lady simply insisted they be redone by the original bracemaker? That is another coping skill already learned.
Sometimes you cut your losses.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without the prior permission of the author and publisher.
© 1989 by LaVonne Schoneman and published by ART Associates Seattle, Washington
First printing April 1989
Second printing August 1989
It is a spring day in 1949. I am eight years old. We go to school in the country. The tiny grade school and high school have less than 60 students in attendance. I am in the combined third-fourth grade class. It is recess time and we are all outside enjoying the sunshine.
My friend Pauline and I are playing on the jungle gym. She is a fourth-grader who is bigger and stronger than me. I am a small, timid third-grade girl. She is hanging from the bars by her knees, upside down, swinging to and fro encouraging me to try it for myself. Pauline is wearing jeans under her dress, but I am not. I have almost grown brave enough to give it my best effort when her face clouds with anxiety. She drops agilely to the ground and hurries to the side of her twin sister, Kaylene, who is sitting on the sidelines.
Kaylene is wearing a brand-new, bright-yellow, cotton dress with a gathered full skirt which is designed to cover the cruel metal braces encasing both of her gaunt, paralyzed legs. Kaylene is in the third grade, like me, because she missed school all of last year.
While Pauline went to school battling multiplication tables and spelling, Kaylene fought against polio in the Children's Hospital. The disease that sought to steal her life eventually gave way. After months of pain and persistence Kaylene won.
Now she sits on the sidelines watching the other children at play. Her thin, white face is twisted as she tries to hold back the tears, for a greedy cloud of black gnats, attracted to the bright yellow, darts and settles onto her new dress. Futilely, she brushes at them with her frail hands. It is only her first day back at school and her parents so wanted it to go well. That is the reason for the new yellow dress. Pauline is swatting and brushing the gnats away from her sister protectively. When they are finally dispatched, she gathers her sister into her strong, young arms and holds her close. Soothing and whispering to Kaylene, Pauline the defender, has driven away the hordes of gnats.
I watch, dumbly. For the first time in my life I empathize with another human being. I try to imagine how Kaylene must feel. How Pauline feels. How do I feel? Unable to express myself verbally, or offer any concrete assistance I stand staring, rudely, just as all the other children on the playground are doing. Silence reins. Pauline looks up, flashes her bright smile, and shouts to me breaking the spell.
"Go on, hang from the bars like I did!"
Anxious to do anything to please, to cover the awkward moment, I hasten to do as she bids. Braids swinging, skirt-tail flying, blood rushes to my head. Looking at the situation from upside-down, a moment later, I am startled to realize that compassionate tears are running into my hair. The bell rings. I land in a jumble under the bars, and brush my wet bangs off my forehead just in time to see Pauline and the teacher assisting Kaylene back into the classroom.
That was my first introduction to polio -- or as we called it then, infantile paralysis.
The second time I encountered that remorseless disease would be on a far more personal level. I would learn, first-hand, how Kaylene felt that day on the playground so many years ago.
Because I did not experience the devastating effects, at onset, that most victims of polio did, no one ever knew that in the next great epidemic I, too, became a statistic. In 1990, I am one of the 1.6 million polio survivors still living in the United States.
LaVonne Schoneman © 1990
Cooking becomes a problem for some people as the muscles grow weak or the endurance goes. Standing while mixing, measuring, chopping, stirring, frying and so forth is hard to do if the legs aren't up to it. This is a problem easily solved with a stool or chair. How about lifting those heavy pots and stirring or turning food? That can be too much too. Some people never liked to cook anyway, so now it is a double burden.
The solution is a crockpot.
This handy item can be placed in a safe, secure, accessible spot on a counter where it can be filled at one's leisure. After the ingredients are put into it, the crockpot is plugged into an outlet and the lid is replaced freeing the cook for up to twelve hours.
I highly recommend this device in place of some of our old-fashioned, but heavy to lift, or even dangerous appliances, like cast-iron skillets or a pressure cooker. A roast, soups and stews, potatoes baked in foil, or even bread and cake can be cooked in a crockpot. If it takes a few extra minutes to get to the crockpot it doesn't blow it's top or burn while waiting for you.
Using the stove can be a little hazardous if you need one hand to support you while standing there for too long. The microwave is another handy device that can be placed at your level of convenience and comfort. Another person sharing the home can be drafted to carry heavy objects saving you, the cook, wasted energy trips.
The cost for a crockpot is minimal -- somewhere between $10.00 to $25.00. The insert for baking is a few dollars more, but worth it. If you are still shackled to cooking the hard way, lighten up!
This is an easy to make, hearty meal in winter. My husband calls this his favorite soup. Just think -- it's as easy for a man to use a crockpot as it is for a woman.
My favorite crockpot recipe is for:
1 or 2 nice ham hocks
½ onion diced or equal amount of dry onion flakes
2 ribs of celery diced
½ cup uncooked barley water to fill crockpot 3/4 full
Put on the lid and forget it for 8-12 hours. At end of cooking time, remove lid, stir, season with salt & pepper and parsley flakes. If you add chicken or beef bouillon cubes and a bit of milk it is even nicer.
Someone else can set the table and dish up the soup, while you carry in the soda crackers to go with it. After all, you did all the work -- you made the soup didn't you?
If you thought I meant dealing with your own denial of polio or post polio, THINK AGAIN. I'm talking about the denial we face from others. That's right! All of those people out there who make it harder for us to deal with our own physical limitations whether they are new ones or just the same old ones.
Maybe it is the friend who refuses to see you as you are now and constantly harks back to a different time when you were a different person. I have such a friend who steadfastly refuses to see me as I am NOW. I am a 48 year-old person with post polio problems in my right leg and foot.
She prefers to remember me as a 28 year-young, energetic mother of three small daughters, who was able to do a dozen tasks a day with unfailing energy. I was her role model. She looked to me for guidance in raising a family, running a house, working part-time and full-time, while going to school and doing community service. In those days I was a trim size 7, with long dark hair and boundless stamina. I could outshop, outwork and outdo her all day long. Post polio had not caught up with me yet.
The pity is that she has refused to allow me to grow in her own mind. She cannot see my gray hair, the increasing disability, the grandmotherly figure which befits my time of life. I find myself getting so angry with her as she tries to hold me hostage to the past. She is unable to see that I am still an interesting person with a lot to offer our friendship. Because she will not or can not accept me as I am today, our friendship is in serious jeopardy.
Maybe someone is holding you hostage, too. It could be a spouse, parents or children, an employer or a friend. How can we deal with these unrealistic people who place their unfair expectations upon us?
After we have done our best to be honest with these people, to educate them about our new disabilities, and explain our new limitations, can we do more? If someone expects too much from us, be it a hike through the zoo or shopping mall, a marathon hobby session or whatever is currently beyond us, how can we deal with the rejection their refusal to face facts presents to us?
First, we can do everything possible. Such as: sharing information, helping to educate them, and explaining the facts, but then we must step back and wait to see if they are mature enough to live with the new truth. Now the burden of acceptance has shifted to them. If they are still not able to face the facts, we have only two choices.
Keep on pretending things haven't changed. Which takes a lot of energy on our part. Or realize that this relationship may be one you have both outgrown. In order for a relationship to survive it must keep pace with the current events in each person's life. Unless both parties are willing to do this, the relationship withers and dies.
So, okay. Mourn it, but don't bury yourself along with it. Life is full of people and new relationships are a constant possibility. Our numbers have found new jobs, cut apron strings, survived divorces even. We have not given up. Why? Because we are fighters, survivors, winners.
Living up to impossible expectations is another form of denial. We don't need that. So, do all you can, then, accept the outcome either way. Finally, get on with your life. It is YOUR life, after all, and the only one you'll ever have. Get on with the business of living it.
We can opt to stay with old, outworn relationships that only hurt us and damage our self-esteem or we can choose to build new ones. The decision is up to you.
LaVonne Schoneman is a writer living in Seattle, Washington. Her published works include the HOW TO COPE series of books, health articles and short stories, screenplays, fiction, and poetry as well as a regular column (lasting five years) for the Polio Survivors Newsletter of the Pacific Northwest (no longer being published). Her work has appeared in publications in Canada, Australia, Mexico and The Netherlands in Dutch translation and Taiwan. Current writing projects include a novel, and more books in the HOW TO COPE book series. Recent publications include: REMOVING BARRIERS in ARTERIAL Magazine, Summer 1992, cited as a reference in AUSTRALIAN PHYSIOTHERAPY, Aug. 1991, THE WINNER! in INTEGRAL POINT!, Summer 1992, HOW TO COPE Bulletins (published quarterly). THE GIRL IN THE YELLOW DRESS is her most recent film. 1995 saw publication of a Chapbook of poetry: POEMS FOR A RAINY DAY with continued marketing of her novel CLEAR CITY; WRITER'S DIGEST & FAMILY CIRCLE published her work in 1996-97. Her poetry has appeared in dozens of publications.
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