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Credit: The Desert Sun

I suppose the first memory of her was when I was about 5. We were sitting on the bathroom floor, and I was crying. My older brother, Jim, had dressed and had run out into the warm Illinois sunshine.

My mother, Iris, was trying to put my steel leg brace on, tying the orthopedic shoe, the leather calf strap, the knee pad, the thigh strap and buckling the steel belt around my waist. The room was hot and the heavy belt bit into my hips as she struggled to pull up my jeans over the shoe and the brace.

“Why me, Mom? Why did I have to get polio?” She stopped and took my hands in hers. She was then about 30, beautiful with wavy chestnut hair to her shoulders, and hazel eyes. “But Kurt, Jesus only chooses the bravest boys. God picked you above all the boys in town.”

Our little town was once known as Hardscrabble. It is now Streator. The three of us – she, my brother, and I – had returned there from the East Coast to live with her mother when my father died suddenly after World War II.

It was there, while working as a secretary at the newly completed Pentagon, that she met my father, a young soldier. It was there she met President Franklin D. Roosevelt. The awe of reaching down to shake his powerful hand never left her.

The author at age 5.

I bit into my lower lip in an attempt to live up to her words. “Am I brave?” I asked. “Of course you are. And God will always watch out for you.” She pressed her handkerchief to my face, and ran her hand through my blond hair.

“Now you go and play with Jimmy, and close the door because I want to do some sewing.”

Our bathroom consisted of a toilet, a yellow linoleum floor, a big closet and a Singer sewing machine. A bathtub and hot water out of tap were yet to come. I closed the door and expected to hear the tap of her foot on the pedal of the machine. I heard sounds but knew I shouldn’t open the door. When I came back into the house, she was just walking out of the room. The machine was still covered, and she avoided my eyes while touching at hers with a handkerchief.

Eventually, she married again and was there through my therapy and operations, the wheelchairs and crutches, stoic and accepting. And she was there with her arms crossed in front of her chest, all 5 feet of her, when she made me crawl into the raspberry bushes where I’d thrown my brace in frustration one day. “Don’t you want to get well?” she cried out.

By the time she had a new baby boy she named Pat, and my older brother was studying physics at Virginia Military Institute, I had left the braces behind.

For quite a while, things went well. But at my brother’s graduation, like all mothers who never stop being mothers, she pushed when she saw fit.

“Now you get that mole on your neck looked at, Jim.” At the end of two years, Jim had a wife and a one-week-old girl named Felicia, and he lay dying at home with melanoma. On weekends from college, I would help him into his wheelchair and sit by the side of his bed, talking.

Mom prepared her youngest as he faced the wall, his eyes tightly shut. “Pat, the doctors say that Jimmy is going to die.” He whirled around, furious. “No, he’s not! They’re only people – what do they know?” It was the indefatigable logic of a 9-year-old. She was resolute. “Jimmy’s going to die, and you have to be brave.”

On a cold February morning, he was buried. It was, except for one time in the future, the only time I would see her cry. She faced the church, the chilly wind at her back, her chin against her chest, arms at her sides, and cried like a little girl. Same God, different son.

I was about to graduate in journalism from Northern Illinois University. She held my hand at the reception after the funeral. “Well, I have you and your brother Pat,” she consoled herself. “But Mom,” I began. “I’ve accepted a job in Australia. I’m leaving right after graduation. A man named Rupert Murdoch has hired me to be a reporter.”

Iris

Again, the hazel eyes. Maybe she thought of her young dead husband and her young dead son. “Yes, you go.”

We wrote through the years. She and my stepfather visited me once in Sydney, but had no interest in coming to Paris when I moved there. By then, they were happy and had settled in Sycamore, and were busy with a new life and new friends. She wrote of them, including a Mrs. Crawford, whose granddaughter, Cindy, wanted so much to be a model. Life was good.

And then her second husband died suddenly. It was later remarked by friends how strong she was, how she didn’t cry. But there was a crust now. She never talked about bad things. She had developed an ability to store those things someplace in her mind where they were not touched and could not touch her.

Again, she prospered. Back in Streator, she rented a split-level garden apartment and began dating an old friend, a widower. There were dances and dinners and visits to me here in Palm Desert, Calif. She celebrated her last birthday, her 80th, here with those closest to her.

Then a car crash near Springfield, recovery, confusion. Then a fall, a broken hip and more confusion.

My brother and I headed back to our hometown.

We got her settled, hired caregivers and rearranged the furniture so her walker would not catch on a rug or table. My brother headed back to Inverness.

I stayed to help Mom walk again. Her hip ached, her unused legs ached. Her mind was not sharp now. We had to tackle the stairs. “No, it’ll hurt,” she said. I guided her forward. “Don’t you want to get well?” I cried out. I stood at the top and watched her pull herself up by the railings. She pulled and rested again and again. Tears filled her eyes. Eventually she made it to the top, exhausted.

She started to cry. “Why me, Kurt? “Why did this have to happen to me?”

The words barely left her lips as she looked at me with those hazel eyes, clouded now, and we both went back to that room at my grandmother’s. I took her hands in mine. “Mom, there’s no answer. Bad things happen, and it’s not anyone’s fault.”

Could she have thought that of herself all these years? We sat at the top of the stairs for a long time, saying nothing, thinking. Doctors discovered cancer soon after.

She died on Nov. 30, 1998. It was 50 years to the day I was diagnosed with polio.

Kurt Sipolski is a freelance writer living in Palm Desert, Calif. He graduated from NIU in 1968.

In May 1953, when I was six months old, my mother I boarded the Queen Mary to go to Glasgow, Scotland to spend several months with her family. Shortly before we were to return home, I contracted polio. At 9 months of age I was placed in a hospital until just after my first birthday. I’m not sure what type of polio I had, but I was never in an iron lung. Due to my illness, we flew home rather than return by ship.

Throughout my childhood, I had several surgeries to correct the muscle contraction that was occurring with my left foot. Tendons were stretched, a toe bone was removed and inserted in the arch of my foot to try to keep it from curling. I always walked with a slight limp and could not stand flat on my left foot.

A few years ago, I had another operation to stretch all the tendons and remove another toe bone to straighten the left foot, again. The gains made are already reversing.

While never an athlete, I was always active. I could swim, ride a bike, walk and dance. I could never run no matter how hard I tried. My body simply could not accommodate running; my muscles could never figure it out. In spite of this extremely mild handicap, I always participated in gym, hiking and swimming with friends. I always had friends who encouraged me to participate with them no matter how pathetic my performance might be. I credit them with keeping me active with their “Just Do It Anyway” coaching. Since the age of 20 I have been doing yoga off and on. I now find it to be the one physical activity that works well for me.

By not having the abilities to be great physically, I turned to reading and mental pursuits, which have served me well. Excelling at school became my focus.

I am married, work full time in an executive position, gave birth to one son and adopted another son. I have 5 grandchildren, good friends and a good life.

Over the last 5 or 6 years, it began to be hard to go up and downstairs and harder to complete my 1.5 mile walks. I thought maybe if I worked out harder or lost some weight I could improve. I would occasionally fall down for no apparent reason and would blame it being klutzy. From time to time, I would take a step and my leg would just not be there. I never hurt myself badly, just embarrassed myself. At the end of a busy weekend, playing with my grandchildren, shopping and doing laundry, my feet, legs and neck would ache to the point that I would cry. I thought I was just out of shape and should work out more.

In April of 2009, I was visiting one of the offices I manage in Connecticut. I was walking in the lobby , took a step and fell down. “Stupid shoes”, I thought. A few hours later, I was walking to a restaurant for lunch with my staff , took a step and fell on the sidewalk. My knees were cut up and my pantyhose destroyed. My co-workers were upset. Later that day, leaving for home, one of my co-workers determined that she would walk me to my car, holding my arm. Two steps into the lobby and down I went again. We were both getting concerned.

I could not reach my primary care physician, so I called a physical therapist I had been seeing for plantar facsitis. My husband took me in to see her. She was very alarmed and referred me to a local neurologist. She also gave me a walker to use for safety until I could get to the doctor. On the way out of her office, I fell using the walker and injured myself badly. I broke two toes and bruised my hip.

I saw the neurologist the next week. Ten minutes in his office and he admitted me to the hospital for tests to determine why I was falling. He suspected post polio syndrome, but wanted to be sure it wasn’t a disk or something worse. After 7 days of testing, the diagnosis was post polio syndrome.

I now have a brace, a hideously ugly, unmanageable thing I wear to get out to my car. It tears pantyhose to bits in seconds and won’t stay up. I have a wheelchair (the story of obtaining this item is too long and frustrating to go into here) and glide chairs to go up and down the stairs of my home. Eventually, I will get a handicapped accessible vehicle. In the mean time I make do with my beloved Honda CRV.

I tire more easily these days and have lost a small amount of independence. Shopping online has replaced shopping at the mall. I usually need someone to go to the store with me if I venture to one, but I can do it alone. I have my groceries delivered, which once experienced, anyone would do simply for the convenience. My employer is extremely accommodating and my job as a regional executive managing 6 offices does not require my physical presence at all times. I am able to work from home which is a huge assist. The effort involved in getting showered dressed and to the office is exhausting.

While I miss going for a walk and not being able to dance at a party or wedding makes me sad, my life is still filled with both wonderful and mundane activities. My biggest concern is weight gain and losing any more function.

As with any condition or event there are benefits. I have learned that people are extremely kind and helpful to the disabled. They are also patient and forgiving when one is frustrated and cranky. There is no waiting in line at the movies, you move to the head of the line when boarding a plane which allows first choice in seats. I finally agreed to hiring someone to clean my house and do laundry which I once thought of as a luxury or cop out for lazy people. Silly me, I should have done it years ago. I also know for sure that I am married to a wonderful man who spends a great deal of time assisting me and coming up with new and better ways for me to navigate in my home and the world.

I have had to adjust and adapt, but it could always be worse. One simply has to play with the hand one is dealt and keep the whining to a minimum.

During that time I was one of two patients who Sister Kenny used to demonstrate her techniques to doctors. I remember the masked figures in a large semi-circular room and the spotlights. I remember the smell of woolen blanket strips put into boiling hot water in washing machines and wrung out before being wrapped on misshapen limbs, which were twisted and turned and manipulated. I remember it now after being hypnotized as an adult because the memories were too traumatic for me for years, and I’d remember them only as nightmares.

We moved to California, where after much work, I was able to walk without crutches or braces by the time I was in junior high school. I finished school there, joined the Navy (I was even on the drill team!), and used the G. I. Bill to go to college before working for 40 years in education, while continuing in the Navy Reserve. In my last years working, post-polio symptoms set in, which I attributed to aging. But after a routine physical with my doctor, he referred me for further testing to a neurologist, who diagnosed me with post-polio syndrome.

By this time I was using a seated walker at work since I worked at a large campus and was having difficulty getting around it without help. Students helped me accept the need for help by naming my walker Handy Dan. I also put a horn on it so when I came around a corner I didn’t bump into anyone. My work as a school counselor at that time necessitated my travel throughout the campus. It helped my type “A” personality accept that I could still function with limitations.

Now I am retired and have had surgeries on both legs so that I can get around with limited help of a cane. So there you have it. I remain active by volunteering for two different organizations and whenever. My doctor who understood post polio is no longer there, and the new one leaves me with the feeling that I am a dying breed, but I am persevering on my own as well as I can these days with the memory of Sister Kenny’s words still ringing in my head: “You can and will walk.” So I am, as long as I can, with minimal assistance, and a positive outlook.

– Lorraine Hartik

About 17 years ago I began to experience symptoms of PPS, and my physician told me I was just associating these symptoms with my research. My left ankle and lower leg got so bad that my orthopedist sent me to a physiatrist in New York City who was around during the polio epidemics. He, after a thorough examination, told me I had the symptoms of PPS. He asked me to speak to my family. The only one alive was an 89-year-old aunt who was a nurse. He also prescribed an ankle-foot orthosis (AFO).

The following February, I was in Florida to speak to the Boca Raton PPS Group, and I stopped to visit my aunt. She broke the silence and confirmed that I had polio, but she couldn’t remember how old I was when I became sick. I never knew I had polio. Today I wear a full-leg brace on my left leg, and an AFO on my right leg. I will eventually need a knee-ankle-foot orthosis (KAFO) on that leg, as well. I am 72 years old. I still go to school and teach three days a week. I think of this as just “a little inconvenience,” and I have to be the luckiest guy in the world that I was not disabled all of this time.

– Michael Kossove

I remember nothing of the next couple of days until I was rolled on my side for a spinal tap. Then a doc came into my isolation room and told me I had to learn body alignment which meant lying flat on my back with no pillow in case serious paralysis set in. Sister Kenny method hotpacks with wool & cotton blankets soaked all bedding a couple of times a day. I remember lying in bed wondering if I was still going to be accepted by the kids in school and the neighborhood. I went through all the soaking in warm, swirling water and the painful bending and manipulation by the physical therapist. Finally, after three weeks I was moved to pediatrics where another doctor scared me by telling me the future held crutches and braces and staples being inserted around my right knee cap to impede growth so the left leg could catch up. As soon as he told me that I was determined to learn how to walk again! When alone, I sat up in bed and very shakily held onto the wall as I got out of bed and tried to take a few steps to the bathroom. After a few days I was walking the hallways like Frankenstein. I spent only two months in the hospital and had a year and a half of physical therapy.

A little over six years later I enlisted in the Army in February of 1966, talking the Army doctor into accepting me after he had initially disqualified me from service because of physical limitations. I retired from the military as an Army Reserve colonel forty-one years later. I have been told many times that I am a classic, very strong Type-A personality. I have taken everything in life as a challenge, proving to myself and others that I could do the same things as everyone else.

Lately, the physical grind has caught up to me. I have been diagnosed with myasthenia gravis, both types of sleep apnea (I have a bi-pap machine) and limp noticeably. I have had ortho surgeries on my back and shoulder. How much of the physical weakness comes from the fact that I’m 63? How much stems from the fact that I have several serious maladies? How much can be attributed to polio? I don’t know but still consider myself extremely lucky.

My journey started aged 5yrs 9 months, I had not been feeling well for a couple of days and one morning I tried to get out of bed but my legs wouldn’t support me and I kept falling over. My Mum panicked and called our local Doctor. To this day I can still remember Dr Jennings arriving in his PJs, dressing gown and red hair all over the place. The date recorded in the Infectious diseases book was 11th March 1957.

The next thing I remember is that I’m at the local hospital in quarantine. My most vivid memories are of the pain that followed, including a Lumbar Puncture (Spinal tab). As luck would have it, our Doctor was up to date with Polio and had contact with others that used the Sr. Kenny method. For the next 24 to 48 hours following the Sr. Kenny method, Dr Jennings and the nursing staff worked their magic. I’m indebted to my Doctor and Nurses as only my left leg and hip was left affected with weak wasted muscles, dropped foot, and shorter than the other. I spent 3-4 weeks in quarantine at Mudgee Hospital then went to Camperdown Children’s hospital in Sydney (about 4hrs away). I’m not sure how long I was there. Through the following years I had a series of operations on my leg including straightening my knee to face the same way as my foot, ankle Arthrodesis and a leg lengthening. I also used a full length calliper for a number of years, then a lower leg calliper and finally a built up shoe. The Specialist told Mum that I probably wouldn’t be able to do a lot of things – but I proceeded to live a very full and happy life doing everything kids, teenagers and adults do including tree climbing, bike riding, dancing, driving a manual car, participating in high impact aerobics, body pump, step and RBM classes.

In October 1973 I married a wonderful man (still married). In May 1977 our little ray of sunshine in the shape of a girl arrived, and then in October 1979, our very active son joined the family. In October 2002 we were blessed with a delightful granddaughter who is the light of our life.

I’m not sure when the PPS symptoms started; I can remember things like not being able to walk as far because my leg seemed to be getting tired. And after a day out travelling and shopping, I would be very fatigued with muscle aches even in my good leg. Even the house work started to take longer. A lovely elderly neighbour must have noticed my new weakness because one day a PPS network poster was slipped under our front door. On the next visit to my current GP I asked about PPS and was told there was no such thing, so I let it go. But my symptoms seemed to be getting worse, my left leg was weaker and I started to have a few near falls because my leg would just give way for no reason. The aches, pains, cramps and fatigue was becoming more frequent, but still not getting anywhere with my GP, I started to think it was all in my head. When my current GP left and a new English (very young) Doctor arrived I asked his opinion on PPS He did a lot of research and I’m now back in a lower leg calliper, and Canadian crutches and I’m learning to pace myself. After further follow up it looks like I’ll be in a Stance Control Knee, Ankle, Foot Orthosis, but with the grace of God, I’ll still be on my feet for a while longer so all is good with my life.

In closing I’d like to thank everyone involved in the Post Polio Network in Australia they do a fantastic job publicising the effects of PPS and the help and support is available. This April, 2010 they organised the first Australian Polio Health and Wellness Retreat. It was outstanding. Also thank you for this site ‘Polio Today’, it’s great to connect with other survivors around the world and be able to share with and learn their stories.

Thank you

Ella Gaffney

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