PSN Library Files

Dr. Henry writes about Falling

On January 6, 1996, we had a shortened meeting because the Blizzard of ’96 began that afternoon around 2 P.M. As you also know, our February meeting was canceled because of the slice (snow, sleet, and ice) storm. The few brave or foolish souls that were present for the January 6th meeting did engage in a lively discussion about falling, no doubt inspired by the vision of snow falling outside of Sheltering Arms Hospital. Some of us have vivid and unforgettable memories of falls we had in our youth because of the residual effects of polio, and others have equally memorable accounts of falls that we have had because of the effects of post polio syndrome. An additional problem now is that we are older and probably do not fall as gracefully as we once did. Also, the risk is greater for injury because of weaker muscles, softer bones, and the same factors of aging that everyone experiences. Falling is no fun, but dealing with its reality may build character.

Some years ago, I made a list of all the falls that I could remember. Of course, the bad or spectacular falls are more easily recalled. My list came to about twenty-five falls. The first occurred in the halls of the Medical College of Virginia Hospital when I first learned to walk with two long leg braces and two crutches. Somehow, I lost my balance and fell backward like a small tree that had been cut at the base. My head hit the marble floor and I almost lost consciousness. However, I was picked up, and walked back to my bed. My most recent fall occurred in ’95 when I stepped on a dog toy in the bedroom, lost my balance and actually fell gracefully with no injury. Some of my falls have produced considerable pain, swollen joints, large bruises, and anxiety. Pain is no fun, but dealing with it may build character.

For many of us the experience of terror occurs during that second or less when we realize that we have lost our balance and recovery of balance is impossible. To put it another way: I have lost control and I am going to hit something for sure. A lot does depend on what we hit, and what part of our body hits first. I have fallen on marble,slate, wood, rugs, grass, dirt, concrete, snow, ice, and stairs. The part of the body that usually hits first is any one of the four extremities (elbows, hands, knees, hips ) or unfortunately the head or chin. During that split second of falling weightlessness, our autonomic nervous system kicks into the fright or flight mode. We cannot flee, thus, we have more of the fright mode. By the time we land, our hearts are racing, the respiratory rate is increased, and we are probably breaking into a sweat. If we did not sustain a serious injury, this extra adrenalin helps us get over the immediate effects of the fall. Of course, later, we are quite sore and fatigued, but grateful that nothing really bad happened. Fear is no fun, but dealing with it may build character.

Falls can result in serious injury or life threatening situations. About seven years ago when I was leaving my office rather late one night, I fell on ice about midway between my office and my car. It was very cold. Because of the slippery ground, I was unable to get any traction, and could not get up. I was totally alone. I decided to crawl to my car. With my last source of energy, I was able to pull myself into the car, and get it started, and eventually warm up. This experince taught me about vulnerability, and having better options for help. Even with precautions, bad things can happen. One of our most active members, Carol Ranelli,

fractured her left femur twice one week apart. She was at our January 6th meeting, and felt that the discussion on falling may have jinxed her. On the following Tuesday, she fell in her house and thought she may have injured her knee. X-rays revealed that she had a non displaced longitudinal fracture of the left femur. She was advised to stay completely off of her left leg for several weeks. One week later, she fell again, and this time fractured and splintered the same left femur. She had surgery this time with a rod being screwed to the femur to stabilize the bone. She is at home, living in her family room and has a positive attitude about her recovery. She actually told me about this very painful ordeal with her usual delightful sense of humor. Surviving a major adversity is no fun, but dealing with it may build character.

I am confident that each of you has experienced the reality, pain, fear, and adversity of falling. There are many amazing stories that could be shared by all of our membership. I am hopeful that each of you will make a special effort to be present at the first statewide post polio conference at Sheltering Arms Hospital on March 30th. It should be a time of new educational information, a time to ask questions, and most important, a time to share our experiences on anything from falling to rising. I feel confident that our presence and participation at this conference should build character.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

23rd April 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1996.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© The Lincolnshire Post-Polio Network 1998 – 2010.

© Copyright Henry Holland 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 26th April 1998

Last modification: 22nd January 2010.

Dr. Henry writes about The Virtue of Self Denial

As many of you have probably ascertained by now, I enjoy a good movie. Many of you have probably seen the excellent English film, Sense and Sensibility, based on the novel of the same name by Jane Austen. The book and the film are about a family of three daughters who lose their station in English Society when the father dies and his estate is left to the son of his first wife. The widowed mother and the three daughters are fortunate to be provided a cottage on the grounds of a generous cousin. The story reveals the reality of the absence of rights for women in nineteenth century England. The two older adult daughters have tormented love relationships that stimulate the plot throughout the story. The oldest daughter, Miss Dashwood (Elinor), played by actress Emma Thompson, is the ultimate in self denial. She denies her own happiness for others, she is emotionally restrained throughout most of the movie, and she is admirably virtuous. She is devoted, caring, courteous, and loyal. She is also lonely, unloved by a man, and seems doomed for spinsterhood. Her next younger sister, Miss Marianne, played by Kate Winslet, is a more emotionally expressive and impulsive young lady. Late in the story, Miss Marianne seems to be dying of pneumonia and is in a coma. Her sister Elinor is at her bedside and in a rare display of emotions, her defenses fail her, and she sobs with a plea for her sister to “please try………., do not leave me alone.” Miss Marianne does recover. A little later when Elinor learns upon the visit of a former beau that he still loves her and is free to marry, she once again loses her composure and uncontrollably weeps with tears of joy. In the end the defense of self denial and self control are overwhelmed by the ecstasy of emotion.

I see many parallels in the practice of self denial and self control as displayed in this film and the similar practices that most of us have developed as a result of our experience in life with polio and now PPS. Most of us had polio as children and if we were left with some residual visual evidence of polio, we early on felt the pain of self-consciousness and resisted the perceived pity of others. As a result, we learned the virtues of self-denial. We nobly denied and accepted our insurmountable limitations and overcame numerous barriers, obstacles, and stares. In many of us, it created a strong outer emotional armor of defense, but left us with an inner emotional core of sensitivity and perceptiveness. In time, we gained the respect of others because of our determination, hid our anger, and were quite successful in being normal in every way possible.

Some of us seemed to completely recover from acute polio, or our residual weakness was not noticeable to others. Those fortunate polio survivors were called “passers” because they passed for normal. Perhaps these polio survivors did not need to deny or demonstrate self-control as much as those with an observable handicap. Many of these same passers are now having significant problems with PPS. They also seem to be experiencing many problems with depression, panic and anxiety problems, and a sense of losing their identities. This is my own speculation, but I believe that the passers had less need to develop self denial after the acute infection and now are less prepared to deal with the impact of PPS and the change it has brought in their lives. Do not misunderstand me. All of us are experiencing some of these same emotions just as the former passers. Thus, for many of us who have become experts at self denial, the impact of post polio syndrome has been less devastating emotionally, although still depressing and discouraging. Maybe

there is some virtue in self-denial.

I would like to share another professional observation. Many polio survivors had polio as young children. As a result, many under the age of six have only a few memories of their acute illness. Some have vague memories of being separated from their parents during isolation and remember certain aspects of treatment that was painful such as the spinal tap, PT, or the smell of the wool hot packs. Many of these memories had been repressed or barely recoverable. Now with PPS, many of these same survivors are having recovery of some memories, flashback experiences, and recurrent dreams (nightmares) of their earlier polio horror. Some of these survivors are having symptoms similar to a delayed post traumatic stress syndrome (PTSD). Symptoms such as being easily startled, panic, insomnia, weeping, and vivid feelings of déjà vu are common for PTSD. It seems plausible that the reality of PPS has weakened the defenses of childhood and these unexplained and repressed feelings are occurring again in a manner similar to childhood.

All of this is to say that what we are feeling as polio survivors and as PPSers is not easily understood, but perhaps the search for some explanation is good for the soul. Miss Dashwood discovered that when her defenses failed her, she felt the extremes of emotions, and as a result, she found a fuller life. The experience of emotion, be it joy or sadness, is a sign of a life being lived to the fullest. Most of us have done just that, lived life to the fullest.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

23rd April 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1998.

“Sense and Sensibility” (1995) in the Internet Movie Database (UK). Alternative sites: IMDb (US ), IMDb (Italy)and IMDb (Home)

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any

errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright The Lincolnshire Post-Polio Network 1997 – 2010.

© Copyright Henry Holland 1997 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 28th April 1998

Last modification: 24th January 2010.

Dr. Henry writes about Normalcy

In trying to understand something about the psychological effects of polio, we have often heard how most polio victims exercised and worked vigorously to regain a sense of being normal. In a general sense, this usually meant trying to achieve a level of physical function and social function that was nearly equal to the pre-polio level of function and achievement. Many times this goal was unreachable in measurable physical function. For example, President Franklin Roosevelt firmly believed that he would walk again after his initial polio attack. He actively engaged in physical therapy for seven years trying to walk again. He never walked again, but he did manage to walk for short distances with the assistance of two long leg braces, a cane, and a companion’s arm. A mystery does arise in attempting to explain the psychological impact that this tremendous effort made on the psyche and personalities of hosts of young polio victims.

Being normal can include the simplest of tasks such as being able to feed oneself, dress oneself, and attend to one’s own personal hygiene as well as strenuous tasks such as running fast, climbing stairs, and peddling a bicycle. This is all relative to the degree of disability because the simplest of tasks can easily become the most strenuous of tasks. For example, when I had polio at age eleven one of the most strenuous, challenging and frustrating goals that I encountered was trying to learn how to get off the floor or ground without the assistance of another individual. I attempted this in physical therapy sessions at the Medical College of Virginia Hospital with the use of two long leg braces and two crutches. Success depended on upper body strength, good balance, determination , and overcoming the fear and reality of falling. In time I was successful. Now, with post-polio, I cannot get off the floor or ground without assistance. Also, currently, I do not expect to overcome this limitation. Psychologically, this loss of a previous level of function can make one feel less than normal, and more dependent.

For many of us, being normal included achieving a good education, getting married, having children, and pursuing a career if possible. Of course, these “normal” goals were common among everyone in the 1940’s and 1950’s. Obviously, these goals were extremely difficult for many polios because of an inner sense of being “crippled”, different, or “handicapped”. However, recent polio surveys bear out that as a group in the populous, polios have achieved more education, married at a higher percentage, and have had higher employment percentages than other disabled groups or even in comparison to the non-disabled. Now, after several decades, what toll has “being normal” had on our personhood or sense of self?

Trying to be normal has probably made us into overachievers. I am sure this is nothing new to most of you. In addition, I believe it has also helped us to develop a greater sense of empathy for others in adversity, has made us more tolerant, and has probably made us more stoical. In blunt terms, to change is most difficult for us. Paradoxically, maybe we shouldn’t change. Maybe, we should continue to be “normal”. I think we have gotten good at it. We just need to alter our ways. Our support group has certainly helped me and others in making healthy adjustments. Five years ago, I acquired an electric scooter. Guess what? I save immense energy. Last year, my son built a sturdy ramp for our house. Guess what? I save more energy. Also, in a practical sense, I attempt to do more brain work and less physically

demanding work. This also saves energy. So at least intellectually, I still feel normal.

Perhaps at future meetings, some of us can be spotlighted to share experiences in trying to be normal. I think we would be enlightened and feel a sense of individual and collective validation. Maybe, over the many years, the toll on our psyches and personalities has not been injurious. Perhaps, conversely, the toll of being normal has resulted in character, integrity, wisdom, and love. Everyone should feel good about this kind of normalcy. To borrow an idea from Forrest Gump, maybe “normal is as normal does”.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

23rd April 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1997.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright The Lincolnshire Post-Polio Network

© Copyright Henry Holland 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 24th April 1998

Last modification: 24th January 2010.

Dr. Henry writes about Time and Contrast

In the 1986 film, “Peggy Sue Got Married“, the main character portrayed by Kathleen Turner, is going through a divorce and attends her twenty-fifth high school class reunion. At the reunion event, she is recognized as her class’s high school prom queen, and as part of the reunion celebration, she is crowned again on the stage. In the déjà vu (the sensation or illusion that one is seeing what one has seen before) excitement of the event, she faints and when she regains consciousness, she is in lying in a hospital bed, but the year is the Spring of 1960, or twenty-five years earlier when Peggy Sue was a senior in high school. Her life had gone back in TIME twenty-five years, but she had retained total knowledge of the next twenty-five years. The plot of the story revolves around her dilemma in what to treasure and what to attempt to change with this foreknowledge. For example, she tries to tell her boy friend, who is in a rock band, that he should write a song entitled “You Love Me, Yeh, Yeh”, and she tries to make a pair of panty hose to no avail. She does call and visit her grandparents; an event which she treasures since they had died by 1985. The film raises the question of what would we do different if we had a second chance or what we would choose to savor at some time in the past in CONTRAST to what we know now. This might prove to be a perplexing dilemma if we experienced this Peggy Sue phenomenon.

If I fainted at a party among old friends and awakened in July, 1950, the first thing that I would do would be to run through my entire neighborhood including the school yard playground. I would run until I could run no more because of exhaustion. I would race up stairs two and three steps at a time. I would avoid all

elevators. I would play football, baseball, basketball, dodge ball and go swimming. I would go everywhere on my bicycle. I would do many things, but mostly I would RUN. I last ran on September 10, 1950. The next day I became ill with the polio virus. If I had the “Peggy Sue” opportunity, I would give serious thought to convincing my family to send me to a different school at the beginning of that year. I would do everything I could possibly imagine to avoid exposure to that virus. If I had been able to do just that, what would be the CONTRAST in my life now? Would I have still gone to medical school, become a psychiatrist, married, and had three children? How would each of you answer this same mystery? If you had avoided that destructive virus, what might have been? Would your life have been vastly different, better, or possibly worse? Of course, some of us were more severely affected by this virus than others, and maybe for those who experienced good recoveries, the virus had little effect on the events and choices made in your life, but NOW after much elapse of TIME, we have post polio syndrome. We really do have a déjà vu experience and the playing field is once again not level. We have another CONTRAST in TIME. Some of us with the best recoveries are having significant problems with PPS. The maintenance of past life energies are rapidly waning, requiring difficult life style changes. This is not simple aging, this is another surprise attack, just not quite as sudden, but equally unfair. “Oh, Peggy Sue, Peggy Sue, how my heart yearns for you.”

Or would we really like a second chance back in time? Maybe the mystery of life involves the dilemma of who is chosen for a certain experience and who is not; who is endowed with special gifts and who is not; who thrives in their existence and who does not. Without the eternal passage of TIME and evolving

CONTRAST, we might be devoid of meaning. As a generalization in assigning some meaning to our group, possibly we were chosen for a certain unique experience, were endowed with the gifts to deal with this experience, and now have the striving, dogged determination of the past with the philosophic acceptance of the present. We have existed in TIME and now we are experiencing the CONTRAST, and hopefully we feel some exhilaration in the joy and miracle of our individual and mutual experience in this life.

Peggy Sue, wake up from your dream and celebrate today and the hope of tomorrow.

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

23rd April 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1997.

“Peggy Sue Got Married” (1986) in the Internet Movie Database (UK). Alternative sites: IMDb (US ), IMDb (Italy)and IMDb (Home)

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright The Lincolnshire Post-Polio Network

© Copyright Henry Holland 1998 1999 2000.

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire

Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom. Created: 27th April 1998

Last modification: 24th January 2010.

Dr. Henry writes about Massive Denial

Denial is a word that is frequently overused in American life. We hear it used as it pertains to the method in which many substance abusers or their codependent spouses cope. Elizabeth Kubler Ross identified denial as one of the early stages in the process of dying from a terminal illness such as cancer. In the book of Matthew in the New Testament, even Jesus advocates self-denial as a virtue when he says, “If any man will come after me, let him deny himself, and take up his cross, and follow me.” The dictionary offers several definitions for denial such as rejection of a request, refusal to admit the truth of a statement or charge, disavowal, and restrictions on one’s own activity or desires. Perhaps all of us, at one time or another, have exercised denial in these four ways. In the psychodynamic world, denial is recognized as a defense mechanism. What is a defense mechanism? A defense mechanism is defined as an unconscious intrapsychic process serving to provide relief from emotional conflict and anxiety. Conscious efforts are often made for similar reasons, but most defense mechanisms are unconscious, meaning that their use is not a rational, willful cognitive function of our personalities. Denial is one of at least 17 recognized unconscious defense mechanisms of our personalities. As a defense mechanism, denial is defined as an unconscious process used to resolve emotional conflict and allay anxiety by disavowing thoughts, feelings, wishes, needs, or external reality factors that are consciously intolerable.

Polio survivors have exercised denial to a massive extent for years and have demonstrated how successful this defense can be. Everyone is different in personality, but massive denial has been remarkably incorporated into the lifestyle of countless polio survivors. For those who survived polio with some identifiable residual damage from the disease or displayed an outward sign such as a brace, a limp, atrophy of an extremity, spinal curvature, brace, crutches, or wheelchair, this reality set them apart from their able bodied peers. For any one, but particularly a child, this awareness, self-consciousness, or feeling was unacceptable in order to feel normal. To consciously feel abnormal, crippled, or deformed was very anxiety provoking. The thought or feeling of being different form one’s peers in the classroom, at play, or within the family was unbearable and frightening. To regain some sense of selfhood and a healthier identity, many polio survivors began a process of unconscious denial. At the same time, many were also regaining some use of previously paralyzed muscles. With the encouragement of family, friends, doctors, nurses, physical therapists and many others, measurable improvement occurred and the denial process became even easier to adopt.

How often did crippled polio children secretly entertain “what if” wishes or fantasies? I would estimate that the majority did at least for several months if not years after the polio event. To be surrounded by peers who took walking and running for granted, one would naturally wonder “what if I had never had polio?” In time as this wishful thinking would only produce anger and anxiety, one would gradually adapt to the denial defense and in time, the frequency of such unrealistic wishes subsided. “Why punish myself with such fantasies and wishes, it does not do me any good, it only makes me feel worse.”

Polio survivors clearly had many identifiable needs unless they completely recovered or were able to pass

for normal. Some were severely damaged and needed wheelchairs or even iron lungs. Others needed braces, corsets, crutches, or canes. Many others underwent painful orthopedic surgery and rehabilitation. The overwhelming goal for polio survivors of the 20’s to the 50s’ was to find some way to get back on one’s feet. The world would be greatly limited or nearly inaccessible to those who could not get back on their feet. Needs were hard to deny, especially if a crippled polio fell and could not get back on his/her feet without assistance from another individual. Falling was frightening to so many, not so much because of possible injury, but more so from the fear of being an object of pity and “needing” help to simply get up. How many polios, whether walking with braces or even rolling in wheelchairs, were stubbornly aggressive about opening their own doors or carrying their own objects? Most of us, not only denied, but also resented our obvious need for the assistance that would have made our lives simpler. Many of us became automatic in our refusal to accept the help of others rather than graciously accept the good intentions of others. To admit to ourselves that we had needs was intolerable. We were extremely vulnerable to become absorbed into a life of massive denial. We did just that, became masters of massive denial.

Our massive denial has resulted in a scattered group of variously handicapped individuals who have achieved, contributed to the work force, married, raised families, have done everything humanly possible to be normal, and have successfully denied our polio realities, thoughts, feelings, wishes, and needs. We were fully expecting to complete our life’s course with our denial defense intact and die of natural causes like our normal peers. Polio was past history, and then came the unexpected.

A little over a decade ago, post-polio syndrome became a new reality. Our well-oiled denial defense initially seemed to be helpful with PPS. We could simply convince ourselves that this was something that was only happening to a few polios and it would not happen to me. Or, even if it did happen, it was just a matter of “pushing through” the pain, fatigue, and weakness. The “no pain, no gain” strategy had worked so well in the past, why wouldn’t it work now? Our massive denial was still operant. We all know what happened next. PPS began happening to me, as well as you, and finally to the majority of us. Some of us went to many doctors before getting a proper diagnosis. Some of us went to a support group meeting and did not like what we saw or heard and did not go back with eagerness. To go to a support group meeting was a direct insult to our denial armor. One might see a mirror image of oneself across the room. What would we likely see? We would likely see a person with needs and realities that we did not want to accept in ourselves. Again, our denial armor might be chipped or cracked.

The whole experience of PPS is like a boomerang or a déjà vu experience. We have been caught off guard and our massive denial defense has been invaded and penetrated. What has been the result? Many of us have experienced overt anxiety, depression, anger, physical and emotional pain, loss of jobs and self esteem, family stress, and eventual resignation to an unfair fate. For those who had been “passers’, the whole PPS experience has been an old nightmare or a regression back to an experience they had assumed they had beaten. Massive denial had not been necessary for most passers, but they too were unprepared for PPS and its realities.

Massive denial, was it good for us or not? Do we still need it? Will our minds find an unconscious replacement? These are questions to ponder. I doubt that we will relinquish massive denial. It has been so good to us. Even with PPS, if we have a good day, do we not entertain thoughts and feelings that we can overcome again? Do we not search for more knowledge about PPS, try many untested remedies, share information with each other, and try to gain some semblance of autonomy, even when it is compromised by undeniable realities. Becoming a burden is the last thing we want to be. We must have control of our existence. Denial of our control will likely be our demise.

Only as a result of PPS have we discovered each other. We have helped each other uncover and share our polio pasts, and now we should be better able to support each other, as we grow old in our polio futures. With the knowledge of having and knowing each other, may massive denial go on a much needed and long recess?

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com

23rd April 1998

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in 1998.

The Lincolnshire Post-Polio Network

Registered Charity No. 1064177

An Information Service for Polio Survivors and Medical Professionals

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

The Secretary, Lincolnshire Post-Polio Network

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

Telephone: +44 (0)1522 888601

Facsimile: +44 (0)870 1600840

Email: info@lincolnshirepostpolio.org.uk

Web Site: www.lincolnshirepostpolio.org.uk

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

© Copyright The Lincolnshire Post-Polio Network 1997 – 2010.

© Copyright Henry Holland 1997 1998 1999 2000.

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Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Created: 25th April 1998

Last modification: 24th January 2010.