Experiences

No Memory But Fear

I can recall the homecoming!

Let’s go back to when I caught polio (then infantile paralysis). I was four years of age. Was misdiagnosed as having rheumatoid arthritis for three weeks, then after a visit from a specialist was transferred to an isolation hospital. My parents did not (were not allowed) visits for a full year and then I was transferred to another hospital 50 miles from my home. By this time, two very nice strangers bearing gifts plus hugs and cuddles came once a month. After almost four years, I was sent home because I could walk on callipers and because it was August 1939 and the country and the
hospitals were preparing for War.

Now the strange thing is I have absolutely no recall of the above events. All these details were told to me by my mother and can only be proved by the odd snapshot taken at the time.

I do recall coming to a house I didn’t know, to a sister who did not exist when I left and to the nice people who had visited once a month! The horror and the nightmares I had sleeping in my own bedroom ALONE! After four years sleeping in a ward with 20 others, the constant presence of the night nurse and the small light always alight on her desk, the feeling of abandonment and fear is my abiding memory.

Lyn Hobday, Lincoln, UK

COMING HOME

Travelling in an ambulance was not unusual, but this trip was special. I had been isolated from my four older sisters and big brother for 366 days, yes one year and a day.

It must be the middle to late September, a bit chilly outside, the ambulance men wrap a red blanket over me, which seems to have been woven from barbed wire, and was nowhere as comfy as the cream ones with the holes in.

I am delivered home. Home, this can’t be home. It’s about the size of a biscuit tin, contains all manner of things, a table and six chairs, a side board, a piano (upright), a three piece suite, a dog, now that’s different I haven’t seen one of those before, but best of all an open fire, roaring away in the grate, that’s why they call it great, because it is. The fireguard seems to be made out of solid brass, but upon closer inspection has tiny holes left between the weave; I swear you could have watched an eclipse of the sun through it without any damage to your eyes; and my bed placed under the window, not in front of…… but next to the fire.

Home! This is the woman who came to see me each night, but where’s my mum? I begin to cry for her, the woman tells me it’s all right and that she’s my mum, I know she’s not, she doesn’t wear a hat or uniform like my mum.

Unbeknowingly to me, my eldest sister, Dawn, had seen the ambulance arrive and had hastily asked the teacher if she could pop home to see me (we lived opposite the school), she arrived almost as soon as the ambulance men left. A young woman wearing a uniform, ‘I want to go home, please let me go home nurse’. She looked taken aback, tears flooded her eyes, we were all crying. Dawn gave me a cuddle and said, ‘You are home Shaun’.

Shaun Hardy then aged two and a half

Christine Macklen

 

I had polio in 1956 and spent 3 months in hospital, in isolation for a few weeks then out on the children’s ward.  My left foot and lower leg were affected Obviously I had to learn to walk again. Strange to say but I enjoyed being on the ward because I wasn’t having any awful treatment, and as a result have never feared hospitals and worked in one as a medical secretary for several years. Also, whenever I’m ill now I prefer to isolate myself as it seems to have programmed me to believe that’s the best way to get well. I hate people fussing over me – just leave me be for a few days!! Consequently the covid lockdowns didn’t faze me as much as for some people. I’m happy being indoors. Weird, eh?

 

I’ve been more fortunate than many people in that I’m still able to walk, though much shorter distances these days. In my 40s I used to swim 4 or 5 times a week, 50 metres at a time, head down, goggles on, front crawl, in the fast lane.  I even did a few Swimathons.   Now though (at age 70) I find it hard to get in and out of the pool safely and 20 lengths is about my maximum, once in a blue moon!

 

For pain relief I have a two pronged attack. First and foremost I usually visit my osteopath once a fortnight to keep my spine in better alignment. I’ve been going to him for over 10 years and in the beginning he helped straighten out my polio-affected foot enough to improve my walking so that now I can feel my outer toes more on the ground  and there is less over-pronation. Now he treats my neck and upper back mostly, and sometimes my pelvis. It’s expensive yes, (£60 a session) but I get so much benefit that it’s really worth the cost.

 

At night I use a magnesium spray on my neck, my good side hip and down that leg and foot to ease the daily discomfort so that I can have a good sleep.  It takes effect within about 10 minutes, absorbed through the skin, so it doesn’t upset the digestion. Again it’s quite costly because it comes from abroad and the delivery charge is high, working out at about £90 in total for 3 large bottles. That lasts me about 6 months. I prefer not to take ibuprofen or paracetamol.

 

My biggest problem when younger was buying shoes in 2 different sizes but these days I just wear lace ups or boots so I get only the big size. I get them from Hotter and choose the ones with extra stability. An advantage of getting older (I’m 71 now) so I don’t care too much about fancy footwear!

 

I saw a neurologist Princess Royal Hospital,  and Kings London who was very helpful getting a diagnosis of PPS but that was several years ago. She explained that I needed to pace myself to help manage the symptoms which really helped. But now I’m older, looking after grandchildren all day really exhausts me so I’m afraid I’m going to have to stop that soon.  A shame, because I love their company but I need to “conserve to preserve”.

 

I count my blessings every day and am doing my best to stay optimistic about the future. As long as I can still afford my osteopath I will be okay. He’d better not retire any time soon!!

 

My Polio Life – Zsuzsanna Snarey

 

Even though I had polio as an 8-year-old child, I had always been very healthy. With the help of my mother, I overcame my disability and coped with life as if I were able-bodied. I was not able to run and had to use a stick but that did not stop me from working. I gained a Chemistry degree at London University and met my husband who is also a Chemist. We married and had three beautiful daughters. My pregnancies were trouble free, and I had easy births. I became a part time teacher, I kept our house clean and tidy, did the shopping, attended evening classes in pottery, learnt to play the violin and joined an orchestra, later I joined the Manwood Singers and stood for long hours in concerts. I could lift, if not carry, heavy shopping bags, schoolbooks and after retiring from teaching before the age of 60, I became a chiropodist. I managed to lift and pull my chiropody case and visit people in their homes as well as seeing patients in my surgery. I carried on working until past the age of 76 when we moved to Nottingham.

 

I am quite used to tripping and falling but that does not worry me, I could always get up and hardly ever did any real damage until one day in January 2001 my good knee gave way in the shower, and I cut my right shin on the edge of the shower tray. There was a lot of blood, and my first thought was to stop the bleeding. So, I lifted my leg up and supported it on the wall while I called to my husband to get me some bandages from the surgery downstairs. I stopped the bleeding and bandaged it so well that when the ambulance people arrived, they were quite satisfied with my efforts and I walked down the stairs to be taken to the hospital. I had a V-shaped cut which was stitched up with 27 stitches and I was sent home with antibiotics. Even though I was on antibiotics the wound became infected and had to be dressed in the hospital twice a week. I realised that I should have washed the wound with cold water before dressing it and in the hospital, they assumed it had already been done. After about four weeks the wound became gangrenous and I nearly had to have a skin transplant, but when I was allowed to dress it myself daily it began to clear up and eventually healed.

 

In 2005 I was diagnosed with breast cancer and had to stop taking HRT which I believe helped my muscles and my joints because soon afterwards I started a steady decline. I started having joint pains and my stamina decreased dramatically. I had a lumpectomy followed by mastectomy. The two anaesthetics did not help me either. Later the advice about HRT was changed and now it is not stopped for people who had breast cancer. The following year we bought a folding wheelchair to take on holiday which was a liberating experience for both Michael and I and the year after that I had a Pride GoGo electric buggy because I hate being pushed. In 2011 we flew to Budapest with my family and took a small folding buggy, called a Luggie on the plane.

 

The day before Christmas 2014 I had a nasty surprise, I was diagnosed with Hepatitis C. I have no idea how long I have had the disease which is caught from infected blood. I know that it has harmful effects on the body. It may also have contributed to my failing muscle strength. I could have picked it up in the hospital in 2001 although one doctor suggested that it was caused by the blood transfusions sixty-five years previously when I had polio and was given blood with possible antibodies from a woman who had overcome the disease! I was hoping to have treatment but after two years of fruitless waiting I decided to buy the drug privately from India and took the twelve-week course and I was cured within four weeks. I have by now overcome three possible killer diseases: Polio, breast cancer and Hepatitis C not to mention falling headlong down the stairs three times. My husband insisted on buying a stairlift. So, I have stopped going up and down the stairs which was a very good exercise. It is possible that any one of these influenced my failing mobility, but it is impossible to know which one had the most decisive influence. Another reason for my declining strength is getting older. We lose precious neurons daily after the age of fifty.

 

For quite some time I have been using a wooden stool to do the cooking. I now have a hairdressers’ stool on which I can scoot about as well as lower and raise myself. I sit down to use the vacuum cleaner, sometimes on the mobile stool, or a computer chair and I use the mobility buggy for trips to the shops and to cover any distances outside the house. I expect the day will come when I will need a wheelchair even inside the house, but I try and keep going as long as I can without it. I have a UTX swing caliper for each leg. It took many years of persistence to get them from the NHS. Now I am not able to walk more than a few steps without them.

 

I spend my time in doing mainly sedentary occupations, such as writing, reading, studying mostly on the computer, having spent nearly 18 years looking after people’s feet. But I know that too much sitting is not good for me, so to increase my strength I stand up from time to time and also try to do exercises. Of course there is always something more interesting or important to do, so recently I came upon an online physiotherapy App called OneStep and I have

 

been following their exercise regime. I get reminders on my phone and I am in touch with a real physiotherapist who takes note of my particular condition.

My experience began in 1956 when I was 4 years old. I lived in a small village in Leicestershire
when myself and two other children, one from each of two adjacent villages were diagnosed with
polio. Unfortunately one child died, the other was paralysed from the chest down their life was
restricted to being in, what was called at the time a ‘bath-chair’. Then there was me.
I was paralysed from the waist down with both legs affected but my right leg more severely. I
initially was put into Derby Children’s hospital later transferred to the then Bretby Children’s
Hospital for rehabilitation. With lots of physiotherapy, electro-therapy, and time, I regained feeling
in my legs and was eventually able to walk again, albeit with callipers and with difficulty.
Over that period my feet however had become very misshapen. To such an extent that it was
virtually impossible to wear shoes. I remember having to wear special insoles in over-sized
shoes. The idea being that, in time, my feet would straighten out. This did not happen so when I
was about 9 years old I was back in Derby Children’s Hospital for operations on both feet – 5
operations on the left and 6 on the right. They were all completed at the same time and, as I
understand, tendons were cut and re-routed in order to pull my feet straight. After I was allowed
home I had special reinforced plaster casts made that I had to wear every night. They were
bandaged on to both feet and held them at right angles to my legs. If I recall correctly it was
necessary for this to continue for about a year. I was able to recover and go through secondary
school with no physical problems competing in all the usual school sports in the mid 60’s.
I wanted to join the Royal Air Force (RAF) straight from school but settled into working as an
apprentice electrician at our local colliery. In 1970 though, I decided to join the RAF. I was 18
years old. The procedure was, at the time, to have a Test, a Medical and finally an Interview
where you would then be told if you were successful in your application or not.
My problem started at the Medical stage. It was a case of strip off to your underwear and have a
full examination by an RAF doctor. When he saw all the scars on my feet and I explained what
they were he said that I would not be eligible to join as I would not be able to cope with the
physical side of being in the RAF. When I challenged this with my school report, specifically the
PE section he said I would have to be referred to a specialist. At the appointment the ‘specialist’
had me jumping, walking backwards, squatting and doing all manner of, what i can only describe
as, dance steps!
I was eventually contacted by the Royal Air Force to say I had passed my medical and was to
attend a formal interview. I did and joined the Royal Air Force in June 1970. I went on to serve for
22 years, leaving in 1992 at the rank of Flight Sergeant. In all those 22 years, the polio I had all
those years before did not affect any part of my career.
It was not until around the millennium that I began to be aware that I was finding it more and
more difficult to carry weights. I was a funeral director by now. I put it down to just getting older
but as the years went by I began to notice that my right leg was becoming thinner than the left.
I went to the doctors in 2011 because I was having trouble breathing, especially when in bed and
also because I was starting to be breathless, sometimes at the slightest exertion. I had loads of
blood tests and all came back normal and by now my right leg was randomly ‘giving way’ at my
knee. It was in 2012, on another visit to the doctors and seeing a locum doctor that I was told,
after she asked many questions and looked into my medical history, that I had PPS. To be
honest, I had never heard of it before but both my wife and I were almost in tears knowing what
was apparently wrong with me. Not because of the diagnosis but because we now know what is
wrong and we can adjust our lives accordingly. As a funeral director, carrying was part and parcel
of the job but my confidence had gone due to the randomness of my knee giving way so I retired
early and stopped working.
Now, because of the weakness in my right leg, I am apparently compensating and now my left
hip and lower back are causing problems.
I am 65 now and have no regrets only gratitude, especially to the doctor at Derby Children’s
Hospital, Dr Lunt, who after straitening out my feet, gave me the ability to have a really good
career and life.

Florence Lunde’s Polio Life

 

PP (prior to polio) I was an athlete, went to sleep away camp every summer and rode horseback. I was being groomed to go to a special music high school in New York City.  All that changed in September 1953. I came down with a combination of spinal and bulbar polio at the age of 12 1/2.  I was paralyzed from the neck down and put in an iron lung.  Most of my early memories are very painful to remember for example, I received the sister Kenny treatment which were hot packs wrapped around my limbs.  They were a dark gray material that itched and after that came terrible stretching of my muscles that hurt horribly. I remember when I was transferred from the acute hospital to the respirator center in another hospital in New York City. I was in the iron lung placed into a truck and away we went. When I got to the other hospital I remember going down long corridor looking up at the ceiling with the lights and looking at the physician pushing the iron lung. It was very frightening to me. I didn’t know where my mother was seeing as she came along with me in the truck. Now as an adult, I assume she went to fill out the paperwork but at the time I had no idea where she went. 

 

I was slowly weaned out of the iron lung and was given a cuirass which was a chest shell with the hose in the middle going to the respirator mechanism. I was also placed on a rocking bed which was the worst. I always feared I would slip off the end. By the age of 13 I did not need to use a respirator at all until my late 20s at which point Dr. Augusta Alba told me to use it in the evening with a mouthpiece for 20 minutes to expand my lungs. I followed her directions and did quite well for about 45 years and then started needing night time ventilation. Today I use the vent with a mouthpiece from about 5:30 PM until the next morning when I get up at 7:30 AM.

 

During my teenage years up to my early 30s It was very important to me to be just like everyone else. I started smoking at the age of 16 because everybody else did and this was something I could do just like everyone else. I remember one winter I washed my hair and went out with it wet because so did every other teenager, however I came down with pneumonia when the other teens did not.

 

Other than that my health was good. Once I started to understand that I was not like every other teenager and that I needed to take care of myself and not try to imitate what other people did my health improved I had fewer colds and bronchitis every winter. Of interest is that since I moved to Florida I think I have had two upper respiratory infection in the 15 years I’m here.

 

I was on home instruction for the seventh, eighth, and ninth grades returning to regular high school in the 10th grade. I was the first disabled student to go around from class to class just like everybody else. They appointed another student to take me from classic class and she got credit. Back then they did not have motorized wheelchairs and I was not able to push the manual wheelchair so a student took me from class to class.

 

Speaking of motorized wheelchairs, the first time I got into the motorized chair I went up and down the corridor of the hospital and upon returning to the occupational therapist I burst into tears saying “I have been let out of prison.” I had freedom now I could go and come whenever I wanted to, go where I wanted to and do what I wanted to.  I was not dependent anymore on people taking me someplace.  For the first few months of using the motorized wheelchair I could not sit still I had to constantly move.  For example my husband loved to wax his car I would go and sit with him while he waxed the car.  All of a sudden I had to move I remember saying to him I will be back and I took off went around the block and came back.  I don’t remember how long this behavior lasted but I would venture a guess to say a few months.

 

I went to New York University for my undergrad and graduate work in Speech – language pathology.  I worked at an inner city hospital in New York city for 29 years in the department of rehabilitation medicine and my area of focus was patients who sustained a cardiovascular event demonstrating language dysfunction.  I retired because my body couldn’t do it anymore. I was constantly tired and cranky. 

 

I have also received my graduate certificate in Christian ministry from the King’s seminary. I have authored three Christian books. The first one is God’s word for you which focuses on how God brought me through the early days of polio, experiences I had, including peoples reaction to me now that I had a disability. The second and third books are  sister books: Digging Deeper: the Devotional and Digging Deeper: the Bible study. They are organized by theme. All purchasable on Amazon just type in my name.  

 

God has played a major role in my life.  He took away my anger, bitterness, my depression and filled me with his Holy Spirit and gave me a newness of life with joy and peace.  My husband and I started a ministry for people with physical disabilities in New York City called His Abundant Love Ministries.  It was a once a month group  that met for 29 years before we retired. We saw many people saved and lives changed.  Our television show on Bronx Net, won three Beta awards.

 

My husband was a paraplegic from a construction accident. We were married for 42 years before he passed away in 2013 from dementia. We traveled extensively using travel agencies for the disabled.  A funny vignette happened in Israel. The elevator was so small that a wheelchair user had to remove the foot-pedals in order for the door to close. Well this one young lady couldn’t put her foot pedals back on fast enough when the elevator stopped for her to get out so she kept going up and down until somebody was able to help and all the doors open. The rest of us just sat and waved to her as she came to our floor it was so funny at the time. 

 

I am now 81 years of age and post polio syndrome has done a number on me. Not only am I constantly tired, but I have lost strength, my balance is off and the fatigue is at times overwhelming. Whereas I used to live alone before I got married and took care of myself completely, now I need a caregiver to help me with all ADLs.  There are times when it wears me down usually when I think back to what I was able to do and now cannot. I am a full-time motorized wheelchair user and as I said I use a vent at night. 

 

The support I need as I get older is that I need more and more help to live independently. There has to be a system set in place where people that worked all their lives, making a good salary with good retirement benefits to receive some financial aid to pay for the caregiver. At the time of this writing in Florida, USA the going rate per hour is $23 which gets costly.

My Polio Experience (Anonymously provided)

I am a 75-year-old woman. I had polio when I was 18 months old in the 1949 epidemic, before there was a vaccine. I don’t remember getting ill or being in hospital.

I grew up with a paralysed left arm and a slightly impaired right leg. My parents were told to put my arm in a sling. When I was four, I had an operation on my leg and a doctor decided I should be strapped into a plastic support to hold my paralysed arm bent at the elbow. The support required many tedious trips to hospital for measuring and replacements when it got cracked or I grew. I hated it so much. It prevented me from doing all the things I wanted to do, which, at that age, was playing with dolls, dressing-up, clambering about on climbing frames in the park etc. Unknown to me, my parents were very concerned about how I’d cope at school while wearing the support. Nevertheless, the rule at home was, ‘You must wear the support. Doctor says’. Fortunately, one day, when I was taken to hospital for a check-up, I saw a different doctor. He had the empathy to inquire about how I found the support. When my mother explained how obstructive it was, he surprised her by saying that its sole purpose was to help me. If it didn’t help, I didn’t need to wear it. We threw it in the bin and life improved no end. I started school able to join in everything.

At university, I used my experience to write my undergraduate dissertation on relationships with physically disabled people. This was long before anyone had thought about disability studies. There were few relevant texts to consult. I married, but sadly, was widowed. I was left with a two-year-old son. I brought him up on my own, became a teacher and later left teaching to work in the voluntary sector. In the 2000s I did a diploma in disability studies, which I enjoyed immensely and it gave me a fresh outlook and a knowledge base from which to campaign.

I always fell over occasionally, but thought nothing of it. By the time I reached my 50s, it seemed to me it happened more often. About 15 years ago, I found that I couldn’t get up by myself when I fell. It has led to some difficult situations. I realised it must be post-polio syndrome. My walking had become a bit limited. Following several bouts of infection in my leg, originally due to an infected cut, I was sent to hospital for intravenous antibiotics. On leaving the hospital, I found I couldn’t walk back to the car park. My GP sought the advice of a neurologist who said that the infection could be exacerbating the post-polio syndrome. It would probably get better on its own. It did improve a bit. Now I have had a number of recurrences of the infection and each time I’m left unable to walk as well as I could before. I use a stick and can only walk about 30 metres, with my leg getting imperceptibly weaker with every step. I have to be very careful. I have not found any references, in general information about post-polio syndrome, to infections having this effect.

I have been lucky enough to enjoy much good health. Of course, women need the services of health professionals even when they’re well. As I get older I’ve had to consult health professionals more often. I continue to be surprised and disappointed by their attitudes. It is my experience that, whatever my reason for using health services, the professionals think that, without asking any questions about my circumstances, because I have an impairment, I must be ‘informed’ that I ‘can’t do’ various tasks that I’ve been happily doing for over 70 years and, in the guise of ‘helping’, they actually make life more difficult for me.

So far, I’ve led a fulfilling life. In my retirement, I pursue my interest in politics, support community projects and campaign, particularly around equality and disability access.

Roger Freeman 1953 Actor boxer play

The Bio of Robert Mauro

Here’s a bit about myself and what I do. As you know, my name is Robert Mauro, I was born in New York City on 9/25/46. In 1973 I moved out to Levittown, Long Island. I contracted polio at age five in 1951. I spent nearly two years at St. Charles Hospital in Port Jefferson, on Long Island. I was in an iron lung for about six months. I walked and road a two wheeler until I began feeling the affects of Post Polio Syndrome, in about 1969. By 1974, I could no longer ride a two wheeler. About 1970 I started using a respirator part time. By the mid 1980’s I was using it full time. I began to use a motorized wheelchair in 1980. I can still walk, but so around my home. I do all my computing lying down, not being able to sit at a desk for long periods of time as a result of three spinal fusions, in 1960-61. I received my B.A. (in Sociology) in 1976 from Hofstra University on Long Island, where my first play was produced, in 1971. After graduating in 1976, I made my first professional sale as a writer. Since then I’ve had four books published and three booklets. Beginning in 1987, I started PeopleNet, my own international print personals/networking newsletter by and for disabled singles. Since August of 1987, PeopleNet has brought about a number of marriages. In September of 1995, PeopleNet was transformed into this home page. I presently write the “Computer Talk” column for disabled computer users in Able Newspaper. I have written a booklet called “Total Computer Literacy By & For Disabled Persons,” available from PeopleNet. I’ve also written a booklet on sexuality for disabled lovers called Real Crip Sex. From 1986-1987 I wrote a monthly computer column for The Voice of the Physically Challenged From 1982 to the present I’ve been an administrative assistant at the Long Island Center for Independent Living, Inc. where I help out with their computer and do some of their editorial work. I also started two Internet lists. Mobility@sjuvm.stjohns.edu and Polio@sjuvm.stjohns.edu. My main interest and occupation is writing. As I’ve said, I’ve written seven books and booklets. I hope you check them out. Ask your library or your local book store to order them. Or order them from me for yourself. Check out my home page for the disabled called The PeopleNet DisAbility DateNet (for adults only) Go to my Levittown, New York Home

POLIO’S PRISON

Laurie Mitchell

Reprint of article published by the Albuquerque Journal, 1993

Apprehensive, a young mother clutches her sweater around her with one hand; the other holds the hand of a small boy. She leads him up some steps, through automatic double doors into a lobby. As they enter the large, attractive room, she glances around and notices murals, potted plants and indoor trees. She feels relief. As she and her son approach the receptionist’s desk, they are greeted with a warm, welcoming smile. Almost immediately, a social worker greets the mother and leans over to shake the 4-year old’s hand to ask if he’d like to take a tour of the hospital. He looks at his mother, who nods. The social worker presents him with a brown teddy bear, dressed in a little doctor’s white coat. The bear wears a tiny stethoscope around its neck. A wide smile replaces the boy’s look of apprehension as he asks, “Is it mine? Can I keep it?” The bear is his to keep. Hugging his teddy bear, the little boy peeks inside a typical hospital room and sees what his room will look like. He meets the nurses, and learns what to expect during his hospitalization. He is not afraid. Another time, another place, another child. Her mother carries a 4-year-old girl into the hospital waiting room. The mother sits on a wooden chair, and glances around at white plastered walls. There is no decoration. The dark brown linoleum floor needs refinishing. Nurses wear white starched uniforms, white shoes, white

hose and white caps. Each cap is pinned with the insignia that designates her school of nursing.

The child, who has polio, sits on her mother’s lap. She has not been told why she is here. After an exchange of words between her mother and a nurse, she is torn from her mother’s arms

without so much as a goodbye, placed on a small wheelchair and pushed down the hall to an

elevator. When the elevator stops, the chair is wheeled down a long hallway into a ward — a long wing at right angle to the hall. The child is undressed and put into a short, open-backed hospital gown. She is placed in bed; side rails pulled up, a captive in a strange setting.

I was that child, I was afraid. Ten beds lined each side of the room, headboards against the windows. A white cotton curtain separated each bed. I watched the other children. They were various ages, some sitting, some lying down, and some with immobile arms or legs in traction. Some chattered, but others sat mute, wide eyes frozen in faces, too fearful even to cry. Visitors were allowed Wednesday and Sunday afternoons from 2 to 4. Children whose parents lacked transportation received no visitors, and watched with sorrow-filled eyes as other children greeted their parents. Children would cling tearfully to their parents when visiting hours ended.

Each morning, ward “rounds” were made by doctors, nurses and interns. As this entourage approached, the doctor lifted the patient’s chart from its rack at the foot of the bed. The patient’s progress was discussed, questions were asked, and suggestions were made. Any change in treatment was then given to the head nurse for follow-up. I was filled with dread as I watched this group move ever closer. I felt doomed — as an accused person awaits conviction and sentence. I knew something must happen — otherwise why was I here? What would they conspire to do to me? I learned early on that when the supper cart came around, if there was a piece of stick candy on the tray, it signaled a dire consequence. As a condemned prisoner awaits his doom, I also fearfully awaited mine. The second clue came early the next morning when everyone in the ward received breakfast except me. Not long after, a gurney rolled to the side of my bed. I was lifted aboard and wheeled out. I could not imagine my fate. The answer came only too soon. I learned many years later that during the 1920s and 30s when most of my surgeries occurred, the medical establishment had not yet discovered sodium pentathol. I was born too soon — the anesthetic administered to my young body was ether, right out of the can. A metal sieve with cotton wadding soaked with raw ether was placed over my nose and mouth.

I do not recall any pre surgery sedative given, as is the practice today. The vivid memories I shall carry to my grave are how hard I fought for my very survival. I must have fought with strength far beyond my young years, because it took three people on each side to hold me down, while the seventh administered the ether. Imprinted on my memory are sounds of thousands of buzzing bees in my head, my body whirling around a centrifugal force greater than I, and then finally blackout. This scenario repeated itself many times during my 10 years of intermittent corrective surgeries. Between hospitalizations I was an outpatient. After sessions of physiotherapy I had to return for evaluation. I attended a “tribunal,” where I stood before doctors, naked with the exception of a loincloth that covered my privacy. How humiliating it was.

As doctors discussed whatever problem they found, no one asked, or even cared, what I felt. Invariably, after these sessions I was separated from my mother and admitted once again to the ward for yet another surgery. This scene happened many times from age 4 to 14, when doctors finally agreed they could do no more. By this time I’d had a tendon transplant, bone grafts and various modifications of legs and feet, including the shortening of one leg so it would match the atrophied limb. One foot is two shoe sizes smaller than the other, which results in a double cost for shoes. During this 10 year period, after each surgery, I attended schools for the handicapped. What a difference a few decades make in the approach to children’s medical care. When I review what I experienced as a small child, psychologically traumatized by medical staffs who apparently felt no empathy for a terrorized child, I’m pleased at the progress that has been made. The scars on my legs are minor compared to my psychological scars. If parents and medical personnel could have crawled inside the skin of that 4-year-old girl and imagine the terror in her little heart, they would have freed that child from psychic scars — scars that still haunt her and affect her life today. Small children are now acknowledged as having the same emotions adults do — fear, anger, anxiety, pain, sorry and joy. Children are no longer viewed as objects unable to think or feel. Although too many years have passed for me to benefit from these changes, I am happy for the children of today who will not have to endure experiences such as mine.