Inspiration, news and knowledge from Polio Experience Network
No. 16: January/February, 1997
In This Issue:
“Taking a Beating,” Dave Graham
“Helpful Insurance Information,” compiled by Linda Scott
“What Polio Survivors & Their Families Want Each Other to Know”
“Not Short of Amazing,” Elinor Young
Linda’s Library (Linda Scott)
P.E.N. & ink Link
Taking a Beating
By David E. Graham
Few things in life hit harder than a profound change in one’s physical self. Whether its cause arrives by accident or disease, the loss of one’s mechanics can wield a devastating blow.
In my case, psycho-social issues ruptured first. I use that “two-bit” word to express the damage to my whole sense of self-worth. I could no longer do what I used to do, even what I was expected to do.
My mind dwelled on specific tasks. Amazingly, these tasks did not immediately involve my occupation. My golf swing and the fellows I played with every Wednesday, my trekking through the woods with my sons during hunting season, my ability to launch my boat for trout weekends with my buddies — all were affected. What about my wife? What devastating issues!
I wept. I mourned. I denied. I pictured myself stumbling with crutches, then hunched over in a wheelchair. What vivid images, what depression, what stress! During that dark time my self-confidence took a real beating.
Perhaps a person like me has to be driven to his knees before he finally asks God for help. I have always been strong willed, independent, perhaps belligerent or defiant.
As I look back at those days, I realize how very narrow-minded I was. My disability had become my wife’s disability as she had put it on herself. My kids, my folks, my friends –all were experiencing my disability each in his own way. They each dealt with a bit of denial, guilt, and then isolation. I feel bad that I didn’t appreciate their perspectives.
In my case having post-polio syndrome posed another dilemma. Doctors knew little about PPS. They demonstrated their lack of knowledge by their defensive posture and patronizing attitudes.
An exception, my primary-care physician cares deeply for his patients. He referred me in the right direction. He prayed with me. His focus on God demonstrated for me an attitude that saved my very life. I learned to look up to the Source of all my strength.
When I prayed for help, God was there with His amazing grace. That day a succession of events were put into place. As I look back, it becomes astonishingly clear. Where little could be done for my physical condition, much was done to improve my daily mechanics, my thought patterns, and my availability of resources.
A specialist got me into physical therapy, occupational therapy and mental therapy. Things began to improve one day at a time, one step at a time.
I was referred to a psychiatrist. I felt the most defiant when my mental condition came into question. However, he helped me take hold, concentrate and frame my thinking. In programming my thoughts, I could work on my social interactions. That sounds a bit heavy, but it sure improved my personal relationships.
Focusing on the here-and-now, I tried to shun thoughts about the issues I couldn’t change.
I admit I had some problems with personal hygiene, dressing appropriately, and isolating myself. I found that God has a great remedy for such problems — time. With His help, I slowly crawled back into social involvement.
Discovering real value in belonging to a support group, I’ve met some wonderful friends there. I don’t have to discuss my problems. They already know them.
Now I realize how important for those around me that I keep a good appearance. So much of our emotional stability depends on keeping a up a visual image. Oh, people now expect me to walk with a cane. They find it entirely appropriate that I sit when I talk to them. It’s that clean shaven, smiling face that helps them through my disability.
At first I cursed God for my affliction, “How could He do this to me?” However, with clear mind and purposeful thought, I now realize that God did not bring on my problem. In fact He does not even want me to suffer. God set up our natural existence, and gave us the ability to make choices. He set in place the laws of nature which include diseases and adverse circumstances. Yet, through it all, God promised to be by my side.
“Many are the afflictions of the righteous: but the Lord delivers him out of them all.” (Psalm 34:19).
What Polio Survivors and Their Families Want Each Other to Know
The following is a summary of a post-polio support group discussion that followed a talk by Drs. Susan and David O’Grady, Ph.D. Their talk echoed much of what Dave Graham says in “Taking A Beating,” on page two. We suggest you read that first.
The group was divided into polio survivors and family members. Each group was asked one question. The question posed to each group was:
“What part of the experience of the post-polio syndrome is most difficult to communicate to your spouse/family?”
The polio survivors:
- We are afraid of what the future holds. In fact, sometimes the future seems so scary we can’t allow ourselves to even think about it, let alone talk about it.
- We are afraid that our physical needs will place such demands on our families that they will grow weary and resentful and withdraw support. We wish we had reassurance that we will not become so burdensome that others will leave us.
- We need family and friends to educate themselves to understand the basic nature of post-polio, what causes the weakness, fatigue and pain; why simple exercise won’t make us better, why we need so much rest.
- We want family and friends to not judge us by our appearance. Appearances can be deceiving. More often that not, we look much better than we are. Weakness, fatigue and pain are less visible than braces and wheelchairs, but no less real.
- When we are tired, we mean it. In fact, it usually means we’re exhausted, and it may not be remedied by a short rest. Don’t over estimate how much we can do. We struggle enough as it is to figure out our own limitations.
- Sometimes we need to put ourselves first, which is difficult for most of us to do, as this is a major shift for us. We would like you to help us do this by cooperating when we say there is something we need. We know the difference between a need and a whim. It is hard for us to ask for help. It doesn’t come easily.
Conflict within the group emerged when some participants expressed fear and frustration and others reacted with anger. It seemed that both fear and anger were central and universal experiences, but that people cope differently. The anger expressed seemed to grow out of a need to fight feelings of vulnerability and helplessness and instead maintain a sense of control and a positive attitude. Worried that their fears and sorrow will pull them down, and unwilling to let themselves stay down, some people use anger to protect against feeling fear. Other people are afraid of how intense their anger can become, and so they inhibit and suppress it.
The partners and families:
All expressed a deep commitment to their partner and a readiness to be part of their lives, regardless of changes in physical status. This commitment was not naive or superficial, but seemed founded on genuine love and respect for the challenges their partner have faced and will continue to face. They acknowledged that coping with post-polio syndrome involves a series of compromises, but they adapt by remaining flexible and tolerant.
- It is difficult to see our partners in pain. We feel helpless to ease physical suffering. Therefore, we’d like our partners to listen to their bodies, slow down and not be so perfectionistic.
- It is hard to see our partners reject changes that would help them cope better (e.g. using a wheel chair or a scooter). We do not view use of an adaptive device as failure, but as an increase in functionality and freedom to enjoy life together.
- Sometimes our partner’s anger is hard to deal with. When they are feeling tired and frustrated, they get irritable. If we say the wrong thing, they get upset. We sometimes have to ignore what they’re saying so that we don’t take it too personally.
- The lack of predictability of the illness is frustrating and frightening. We don’t know what our partners will be able to do in the future. Therefore, we feel an imperative to live for today and not postpone doing things that give us pleasure.
- Over time, our role in household responsibilities is getting larger. We accept this. Still, your comments of appreciation are very welcome.
- Some of us feel concern about our own physical ability to provide care for our partners as we, ourselves, age and contend with our own aches and pains. We worry about the possibility of not being able to give necessary help.
- It is difficult to know when to be the cheerleader, when to be comforting and soothing, and when to confront anger or passivity. We’d like to feel we have permission from our partners to express our feeling about this.
In conclusion, there was broad agreement that life is all about challenge and response, that amidst all the hardship, post-polio presents an opportunity for personal growth for both survivors and family if the challenge can be faced with flexibility, acceptance and openness.
Thanks to Tom Christian, ztomcat@juno.com, for posting this to the Polio List on the Internet, where it we retrieved it for our readers.
“Not Short of Amazing”
By Elinor Young
You don’t have to take my word for it. Take my doctor’s; the words of my pulmonologist as written on his report sent to my G.P. “Not short of amazing” he said. Written down. Right there on the report.
What was he talking about?…..
A couple weeks after Sharman Collins came back from the Futures Unlimited, Inc. clinic in Mississippi, and had shown such marvelous improvement, I called my sister, Marg, and told her where Sharman had gone and the exciting, wonderful results she was enjoying.
Marg agreed that it was wonderful indeed, then asked, “Well, are you planning to go?” “Yes, but – ,” I began.
“We’ll take you.”
And so there were no more “buts.” In a few short weeks I was on my way to Mississippi, comfortably ensconced in Marg and Lloyd’s “fifth-wheel” RV. We left Spokane on October 4 and arrived back November 7.
Mr. Ed Snapp has developed a program that provides the environment and stimulation that the central nervous system needs to correct itself. Nothing can be done about the nerves the polio killed, but something can be done about the nerves and muscles we still have, but which have lost their ability to communicate with each other.
I didn’t go to Futures expecting great things. I couldn’t predict what would happen. I just knew that as surely as the Lord had put the trip to Futures together as I could never have done, I knew the results were also in his hands, and they would be right. Right for me and for what I try to do for all of you. But would the results be physical improvement? Maybe not. Statistics were on my side, but as Ed Snapp himself told me, “There are no guarantees.” So far, 85% of the clinic’s post-polio patients have had some improvement — lasting improvement, I might add. That’s good odds, but still no sure thing.
So, I am more surprised than anybody at the extent of what I gained. But what a nice surprise!
It’s not a cure. I still have PPS, but am much better. This is how I usually respond to friends who ask me what the changes have been. I now have new:
Independence. After five years of arms and legs too weak to drive, I am now driving myself everywhere I want to go – – even in this snow!
Freedom. I no longer need the BiPAP respirator I was using 15 hours out of 24. It was like an umbilical cord, pulling me back home by noon, and not letting me go anywhere until after 4:00 p.m. I can now join friends for lunch, or a show – or go myself!
Choices. With my new greater strength and energy, my choices of how to use my “good time” boggles imagination. Before, active mind-and-body time was so narrow, my choices of how to use it, beyond the basics, were very few. Now, I can shop, cook, wash dishes, play a game, write a friend a hand-written letter, concentrate on a good book, play tug-of-war with my dog and all sorts of things.
Yes, it’s true. The improvement is not short of amazing.
Interested? Ask for Ed Snapp when you call 1-601-327-7333, or call or write to Sharman or me.
Linda’s Library
A unique and valuable resource for anyone interested in post-polio syndrome.
from Linda Scott
Some PP’s have incontinence problems and we don’t talk about them. Let’s share. Do you have a success story with treatment? Send it to me, I’ll compile a handout and make it available. Resource: The HIP Report (help for incontinent people),they say:
…..“Incontinence means loss of bowel or bladder control. There are many causes for incontinence. Please see a health professional who specializes in the diagnosis and treatment of incontinence.”
…..For more information about HIP’s services or to receive a listing of other educational leaflets and audio-visual programs, send a long, stamped, self-addressed envelope to
………………..HIP, PO Box 8310,
………………..Spartanburg, SC 29305-8310.
………………..Helpline: 1-800-Bladder.
The ‘butterfly’ mask (Monarch) for BI-PAP users: I add my Kudo’s. After using this new mask two weeks my inconsistent vision problems disappeared. I think the standard triangular-shaped mask was causing me eyestrain. Fit is easy when you have the suppliers handbook to use when solving your particular fit problems. Ask your representative to copy it for you.
DO YOU SLEEP IN A RECLINER? Three comfy washable covers are available: …..1) The Vermont Country Store, PO BOX 3000, Manchester Ctr., VT 05255-3000, 1-802-362-2400, 100% WOOL, 1″ thick fleece, recliner 2-piece cover, #20180 Merino Recliner Cover $69.95.
…..2) Blair Shoppe, 1-800-458-2000, acrylic, four pieces, #78380 Recliner cover $39.95.
…..3) Dr. Leonard’s, 1-800-785-0880, 2-piece poly/acrylic fleece,#92791 ivory, #92809 brown, $14.99.
P.E.N. & ink Link
Keep this in mind for next summer: Alaska Welcomes You!, Inc. and Accessible Alaska Adventures has several great tours available, all accessible to wheelchair users. Call 1-800-349-6301 for more info or browse their Web site: http://alaskan.com/vendors/welcome/l