They didn’t believe us
There is little more important to health than mental wellbeing. If we are anxious, stressed, depressed, the whole body is affected – stomach in knots, muscles tense, nerves on edge, body pulls itself out of joint, cells run wild. Polio survivors at last are coming to grips with the emotional impact of having polio, on our selves, on parents and siblings – and the costs of its resurgence as post polio syndrome. What we went through was real. We are not making up the horrors of childhood or the difficulty of letting that go, especially in the face of the boomeranging symptoms.
For this article Fran Henke searched for an all-encompassing understandable paper with sound advice to enlighten and comfort. It’s a delicate subject. Of course there was no one gem, so following are cherry pickings from the growing range of material online plus first hand gleanings from the Australasian-Pacific conference in Sydney, September 2016, plus personal observations.
Understand firstly that Polio was the AIDS and Ebola of the day.
Polio kids were isolated for years in hospitals or at home under strict quarantine conditions. Some parents were embarrassed to find their child deemed infectious, couldn’t talk about it – even in later life; some siblings resented extra attention the infected child was receiving; a few children were abandoned (in farm sheds even); left without treatment on grounds they had no chance of recovery (didn’t that kid prove them wrong!). The State didn’t want an expensive bunch of cripples either.
The collective legacy was a state of defiance – we were determined to prove we could do what ‘normal people’ could do.
Thirty or so years of that routine, trending into compulsive behavior, we found ourselves back in braces, on sticks, in wheelchairs – angry, frustrated, depressed, confused, with undiagnosed pain, spasms, unbelievable fatigue.
'But I don't want to go among mad people,' said Alice.
'Oh, you can't help that,' said the cat. 'We're all mad here.'
(Lewis Carroll – Alice in Wonderland)
Let’s not say we’re all crackers – for most of the time we get on with life. But when reality does get beyond a joke, the cork blows, talking to family or friends about uncharacteristic panic attacks, flashbacks, fatigue that shuts down the brain, is nigh impossible. The range of reasons has been identified (read on). You might think this is where a polio savvy professional can help – but for those same reasons, we find going there incredibly hard too. This writer did try.
Appalled to tears by Dr Steve de Graaff’s list of potential post polio symptoms at a Sydney conference, I took his advice to seek help before consulting him. Independence Australia offered Polio Network Victorians three free sessions with its Psychology team. Had no idea if airing my fears helped or not until waiting for the polio specialist at the first appointment I had flashes of him in shirt sleeves beating me up. Steve walked out to greet us in shirt sleeves. We joke about that now.
With age, it is natural to look back on our lives – if memory permits. This inevitably brings recognition of emotional baggage – claustrophobia, needing windows and doors open; fear of being tied down or physically restrained; inability to speak up when in pain; morbid dislike of going to doctors, hospitals, physiotherapists, etc; fear of fire, not be able to escape fire (one of President Roosevelt’s greatest fears – and he was famous for saying “we have nothing to fear but fear itself”).
Psychologists at last are starting to talk about the need to treat polio clients, to the point of diagnosing Post Traumatic Stress Disorder (PTSD). IA’s Dr Andrew Sinclair and others have been helpful about memory issues – a former psych nurse suggested polio survivors with no memory of the disease could be experiencing Childhood Amnesia (trauma) rather than early onset dementia.
Speaking in Sydney last year Dr Stephanie Machell, US psychologist polio-trained by both parents with polio: “You are the experts on your lives. There is no training in mental health about polio. I learned to listen and not listen to polio survivors – there is a lot of gallows humour,” she smiled knowingly. “I don’t think there is ‘a’ polio survivor, irregularities abound across the room. But I do have stock lines for patients:
• Polio comes with trauma and a lot of patients are not ready to go there
• Polio is shot through the thread of your being
• Normal falls apart with PPS
• Grief over the loss of identity is common
• Never give up on the things that give your life light and colour
• Treat mental issues and post polio symptoms can improve.
Dr Machell’s advice: “the worst position in a polio family is that of the spouse. Love does not mean mind reading. So many patients ask me to tell their spouses ‘I can’t do this any more’.”
Polio Australia’s first Clinical Study for Health Professionals published in 2012, points out “previous approaches to polio treatment have been to ignore pain and fatigue and to exercise as much as possible; these therapeutic strategies are now being regarded as possible contributors to the post-polio symptoms. So post-polio patients and their families are now being told to dramatically change their approach to managing their symptoms. This is a major obstacle for many individuals and often results in higher levels of noncompliance in treatment programs”.
The study goes on to point out that we tend not to seek help from family and friends, because often on account of the length of time it took to get a diagnosis: “results in many survivors’ symptoms being discounted by their families and often health practitioners”.
As Jerome Kern’s song goes: ‘They didn’t believe me’
For ‘noncompliance’ read we don’t like doctors or physios. This has created problems for practitioners asking for logs of what we eat, or think, or the exercise we do, or ask us to turn up for meetings or sessions that put us back where we were as kids. For example, at Welfare House there used to be a potty book where the doings of each child was recorded. One lazy afternoon am told, I filled it in to show each child had excelled. Only in recent years has the potty book saboteur has realised she might have ticked every box to save trouble. A contributor to ‘Iron Wills Victorian Polio Survivors’ Stories’ recorded she was locked in a cupboard for less.
A comprehensive study published online by the Saskatchewan Awareness of Post Polio Society begins: “Even as the physical causes and treatments for post-polio sequelae (PPS) are being identified, psychological symptoms – chronic stress, anxiety, depression, and compulsive, Type A behaviour-are becoming evident in polio survivors. Importantly, these symptoms are not only causing marked distress but are preventing patients from making the lifestyle changes necessary to treat their PPS. Neither clinicians nor polio survivors have paid sufficient attention to the acute polio experience, its conditioning of life-long patterns of behaviour, its relationship to the development of PPS, and its effect on the ability of individuals to cope with and treat their new symptoms”.
Written by Dr Richard Bruno (pictured) and Dr Nancy Frick and others, the study concludes: “There is something unique about the experience of polio that predisposes to the development of compulsive, Type A behaviour, sensitivity to criticism and failure, and chronic stress, anxiety, and depression:
the early onset of a universally feared, potentially life-threatening illness that presented in epidemic proportions;
the experience of severe paralysis that could be forced to recede with the application of years of strenuous physical therapy;
the need to maximize physical abilities to function in a society repelled by disability;
and the sparing of intellectual abilities that were used to overcompensate for residual physical limitations.
“These factors must be studied if we are to understand the psychology of the polio survivor, maximize treatment compliance, and effectively treat both the physical and psychological symptoms of PPS”.
I have often joked about Type A behaviour, likening us to Triple A batteries. Now I am beginning to understand why we are driven to the point of exhaustion day after day. I hear myself in many of the quotes in the following section on compulsive behaviour:
“The majority of patients treated by our service not only demonstrate Type A behaviour but also evidence behaviours that are not typically Type A. Patients describe an inability to express emotion or admit having physical pain ("I can't complain because people expect the handicapped to complain").
“They inflexibly and punitively judge their own behaviour on the basis of what is "normal" and on unachievable ideals of perfection. One patient stated, "If I fail at anything, I might as well die. It boils down to either using every ounce of my energy to lead a normal, successful life or giving in to my weakness and being inferior."
“Patients also demonstrate a strong need to be in control and report marked anxiety with and nearly phobic avoidance of any change ("I am constantly moving and in a constant state of fear. I feel if I slow down, I'll never get started again") or decrease in the number or extent of their activities ("I can't just sit and do nothing").
“These patients refuse to slow down, delegate responsibilities, or allow others to assist them even when they experience fatigue, weakness, and pain. They report a saw-tooth pattern of activity, characterized by working until physical symptoms prevent them from continuing. Exhausted, anxious, and fearful of criticism, they rest until activity is again possible and then work until symptoms force them to halt.
As one polio survivor stated, "I have spent my whole life pushing to keep going and I still push myself even though I know I shouldn't. I keep going until I can no longer walk or stand the pain. I cannot be stopped. I work until I fall."
Patients also report that they must satisfy the real or perceived needs of others ("I can't ever say 'No'") and some describe a compulsion to perform nearly ritualistic behaviours to escape "mortal danger." One patient stated, "I know it's ridiculous, but I believe that if I make the bed every day I'll never die; I will earn the right to continue to live."
“My dear, here we must run as fast as we can, just to stay in place.
And if you wish to go anywhere you must run twice as fast as that.” (Lewis Carroll, Alice in Wonderland)
Unlearning years of conditioning under treatment can actually increase anxiety at first. As Bruno and Frick point out: “As these techniques assist patients to decrease Type A behaviour, increased anxiety and fear invariably result. Some patients report insomnia, panic attacks, intrusive and emotionally charge flashbacks about their early polio experience, and even fear of impending death. The psychotherapist helps patients understand the origin of these disturbing experiences and learn to tolerate them, reinforces the new self-care behaviours, and supports patients through what can be terrifying days and nights. As therapy continues, patients discover that their Type A behaviour has been more habitual than necessary.
Couples and family sessions are employed for both education about PPS and psychotherapy. It is noteworthy that nearly all spouses, with some striking exceptions, respond favourably to patients' lifestyle changes, with the most frequently heard comment being, "I've been wanting you to slow down for years." (I hear my husband’s voice.)
At polio retreats I attended at Warm Springs, Georgia in 2009 (pictured below) and in Sydney, NSW, 2010, sessions on the mind saw people reduced to tears as buried memories resurfaced. They recalled treatment that would be considered child abuse today. They talked about separation from mothers causing them to bond with matrons, and of parents turning their backs on the infected child. An Italian born woman told how her mother emigrated, leaving her grandmother to bring her up and deal with her illness.
Polio survivor, Dr Mary Westbrook, Associate Professor, Department of Behavioural Sciences, Faculty of Health Sciences, University of Sydney in 1997 wrote a paper called Early Memories of Having Polio – Survivors’ Memories Versus the Official Myths (available online via Lincolnshire Post Polio Library). Dr Westbrook compared official reports in the USA and Australia of what it was like to have polio versus survivors’ stories.
Dr Westbrook wrote: “health practitioners at the time of the epidemics attached little importance to the feelings of patients who contracted polio. They grossly underestimated the degree of distress that people, particularly children, experienced. In essence the medical myth was: Contracting polio is not very upsetting for children; they soon get over any distress unless they are spoilt. (Take this statement into account also in the light of the post Victorian era of parental strictness).
“The impression survivors' memories give of the typical polio experience is of very anxious, depressed, helpless, often angry people. They had been separated from their families, were cared for by staff who were likely to treat them harshly and they had few sources of pleasure or the ability to influence the events that had overtaken them.
“The overwhelming conclusion to be drawn from these analyses of survivors' memories is that the early experience of polio was almost unrelentingly negative and profoundly distressing. This picture bears little resemblance to the medical myth that children experienced little upset and soon adjusted to hospital. Some of the participants in the survey expressed more concern with the plight of younger patients than is apparent in the clinical writings of the time. One survivor wrote, "One dear little dark haired beauty of two years came into isolation and we watched as she was reduced to a little, still heap with only little noises left." Another commented, "I saw so much cruelty and sadness. I sometimes think of all the children in the hospital who were damaged for life."
At the 2016 Sydney conference Dr Machell was asked how to find help.
“People come in to see me terrified they are on a long slow decline. But I remind them there is a plateau. Get (other problems) treated and take advantage of that plateau. This offers big relief”.
She agreed to a questioner that finding appropriate professional help was hard. “Look for someone dealing in medical trauma”, she advised. “Someone with grief experience also useful, realise that loss of physical ability is loss.”
In a second session, Dr Machell equated the polio experience with that of Vietnam veterans told not to speak about their war “but how do you shut off the part of you that needs and wants care? You were sold a bill of goods about polio, told to go home and be a perfect
little person and swallow the pills.
“Then all the things we did to overcome, didn’t work any more. Many people were desperately exercising to get back what they’d lost. One patient believed if she stopped she wouldn’t be her any more. Polios are not “passers’ we have to face up and deal with the international mentality of “crippophobia”.
Disability is the biggest elephant in the room, she concluded.
So is fatigue. At that conference Dr Steve de Graaff asked “Who is the most important person in the room?” A: You are. With better management – aka enjoyable exercise, rest and better sleep we can overcome most of the physical and mental issues that plague us.
Over to us.
“Have I gone mad?” “I’m afraid so, but let me tell you something, the best people usually are.” (Lewis Carroll, Alice in Wonderland)
Informed help is available in Victoria and even on the Mornington Peninsula.
Independence Australia has counselling support from its psychology team specialising in disability related mental health issues. Telephone: 1300 704 456
Dr Stephen de Graaff is alert to mental health issues and will if necessary refer his patients to appropriate local polio savvy health professionals. Phone 03-9809 2444
Polio Australia’s Wellness Retreat for 2017 is on October 26-29, Surf-Air Conference & Events Centre, Marcoola Beach, Queensland. The retreat focus is mind, body and spirit.
Polio Network Victoria’s Polio Day 2017 will be in Bendigo with the theme ‘Your Mind Matters'. Booking details later.
Pictures: top: Leaning Man, Hastings Jetty, 2017 above: the Sun also rises, Hastings Jetty. 2016