It Bears Repeating: Richard’s Story

(I originally posted this in 2010, but with the recent outbreak of the measles virus and the continued resistance of many parents to vaccinating their children, I offer it once again.  It won’t change the minds of those who can’t look beyond the “science” of Jenny McCarthy, but it does bear repeating.)

Polio.  Perhaps to someone born after 1957, this word probably doesn’t evoke much more than hazy images remembered from a high school history book or health class.  But to people who were born prior to that year, it was a word that held an icy grip on the hearts of parents and families across the nation.

The polio epidemic of 1952 was one of the worst outbreaks in the U.S., with 58,000 reported cases that year alone.  The following year saw over 35,000 victims.  Nearly everyone either had a family member affected by the disease or knew someone who had been touched by it.  The cause and the transmission of polio weren’t widely understood.  Parents lived in fear of summer vacation because that time of year seemed to be the peak season for infection.  Mothers kept their children home and inside, away from any possible contact with others.  Public swimming pools were closed.  Some people even resorted to keeping their windows sealed tight, out of fear the disease was somehow borne on the summer breezes.

In 1953 I was about six years old and my older brother was ten.  Our neighbors across the street had four children, two of them grown and on their own.  The youngest, Richard, was thirteen and was often a playmate of my brother’s.  Richard was an active, happy-go-lucky kid of the 1950’s.  But that all changed forever.

In July of 1953 Richard and his family had just returned from a camping trip.  My brother had gone over to Richard’s house and the two of them were having fun playing in the family’s travel trailer.  A day or two later, Richard woke up with a stiff neck and back, which worsened over the course of the day.  A visit to the doctor resulted in his being taken to L.A. County General Hospital to the communicable diseases ward, filled with many child patients just like him.  As his condition deteriorated, he underwent a painful spinal tap, a tracheotomy and was put on a respirator.  All this without ever being told exactly what it was he had or what he could expect.  He was later transferred to Rancho Los Amigos Hospital in Downey, California, which was located in our hometown.  (“Rancho,” as it has come to be known, became the hub of polio treatment and continues to this day to be an important center for rehabilitation for spinal cord injuries and other neurological conditions.)

Richard spent many months in an iron lung, the tank-like device that breathed for him because he couldn’t do that for himself.  Eventually, he regained that ability and was finally allowed to return home.  He wore a full set of leg braces on each leg, enabling him to walk, but with difficulty.  He graduated from high school in 1959.  Because of his disability, he was prevented from working full-time but made up for that by becoming a writer for publications on medical disability issues and by working with medical students who needed to know more about polio and its effects. He is also president of The Amigos Fund which raises money for patient care at Rancho Los Amigos Hospital.

Despite all that polio took away from him, he still remained a positive and optimistic person.  However, in the 1980’s Richard encountered something that had begun to affect many polio survivors:  post-polio syndrome, or the onset of deterioration of the muscles and nerves that had been affected in the initial disease.  There are several theories about the cause of this, from the over-use of muscles compensating for the effects of polio to a possible reawakening of the virus responsible for the disease.  Whatever the reason, currently there are over 1.1 million polio survivors living in the U.S. and many are facing the same situation.  Richard subsquently required an electric wheelchair in order to be able to get around.  He also had to have another tracheotomy so he could use a portable respirator.

In one of those strange flukes that are so common now with the advent of the internet and “Googling,” I connected with Richard after all these years and found that he is president of a non-profit organization called The Polio Survivors Association.  His website is www.polioassociation.org.  It provides much needed information about post-polio syndrome to anyone who is interested.  There is also a forum for survivors run by the Salk Institute called Polio Today at www.poliotoday.org.

The average age of polio survivors is about 64.  The doctors who initially treated these patients are gone now, leaving a void in the understanding about the vagaries of this disease and its aftermath.  Richard will be celebrating his 70th birthday in June and remains an upbeat person, even while facing the loss of all the triumphs over polio he fought so hard for in the past.

Here is a brief video slide show set to music which he created for YouTube about his experience with polio.  Please take a moment to watch it and then give thanks for your health and for those determined people who pioneered the polio vaccine. Unfortunately, many parents today take this for granted and are against vaccinating their children for any childhood illnesses.

They need to watch Richard’s story and reflect on the lessons it holds for us all.