“I don’t have time to sit every hour!”
Giovanna is a self-proclaimed tough old broad. The description not only suits her, it was made for her. With her very “East Coast” demeanor, she sits up straight in her mobile scooter, white pixie-cut hair perfectly coifed, her large, dark Don’t-Mess-With-Me sunglasses perched on her face, sizing up the Redefining Disabled Project and me before she launches into her story. She’s quick, witty, sassy, and, within minutes of our first meeting, the only thing I see she’s afflicted with is an enormous, charming personality. She is all things I want to be when I grow up. I can only hope I am filled with Giovanna’s pizzazz, laughter, wisdom, and energy that would put people half her age to shame when I’m 81-years-young.
It’s an overcast, muggy day in St. Helena and the warm Napa Valley breeze rustles the winery grape vines that surround us, blowing blueberry smells from the nearby composting facility into our olfactory periphery. Only 14 minutes into our interview she dives deep into her vulnerability without much prodding and, though I can’t see her eyes past her sunglasses, I can hear the trauma, the indignance welling up in her throat, rattling the sass of her voice as she tries to make it through the name of the hospital at which she was dropped at the tender age of 8. She does, but just barely: The Home and Hospital for Crippled Children. In that “Can you f**king believe it?!” tone that all we “Disableds” reserve just for one another, she says, “Would you ever hear of that in today’s world?” Sadly, I tell her, I’ve been called “crippled” far more times than I’d like to admit, and we digress briefly to console each other over the power of words that even the ignorant possess.
In 1941 Giovanna contracted polio. After a 30-day isolation at the Bergen Pines Hospital in Paramus, New Jersey, she was transferred to a ward in The Home and Hospital for Crippled Children in Newark once her doctors realized that they could do nothing else for her. It is here that she’d stay for about nine months and experience the beginning of World War II. Of that time, she reminisces, “…things were not good in America then. [We] were coming out of the Depression. There was visitation at the hospital just twice a week but both my parents had to work so I would get to see them only once a week.” She saw her two older brothers even less frequently. All she had were her eleven other ward-mates, all young, ill children, and their nurses, but nothing much else to keep her company. But enter the Tough Old Broad in her: “I took that whole thing into my own hands. I was the biggest conniver you could find. We were not given anything. Not anything. We didn’t have pencils, we didn’t have paper, we didn’t have a book, a teacher, nothing. [I] just [would] lie in that bed and that was it. [I] got [my] food, at least,” she offers sarcastically. “It was imprisonment. It was absolutely imprisonment.” She pauses and perks up a little as I imagine she did then as an 8-year-old: “But if the nurse came around with a roll of tape or gauze, I would just take that and put it in my drawer. It was like stealing. It was really survival at that point.” With her stolen trinkets, Giovanna would create toys and activities to pass the time when the nurses weren’t looking. It was the only way that she was engaged or entertained. She tells me almost whimsically and with a long, tired, and telling sigh, that war broke out four months after she was admitted into the Home and Hospital for Crippled Children. “It was very scary because nobody would tell [us] the truth about anything. Nobody would tell [me] the truth. Now, they had 12 people in this ward and [we] had no idea what was going on.” She recounts, as I begin to realize that I’m sitting in the presence of a hero, of a moment when the other patients in the ward were crying or otherwise unattended to, all scared, all uninformed, all lonely. The nurses, also not knowing what to expect, were putting up black shades on the windows in preparation for war. As the cries of the children became more frantic, Giovanna started making up stories to calm the whole group. “I would just go on and on until everybody was calm and we’d all go to sleep. So, as I said, it was survival. “
After seventy-three years, more than a dozen wars (just think about that for a second), a happy marriage to Jim*, her husband of 57 years, four children**, 10 grandchildren***, two great-grandchildren, many adventures, and a partridge in a pear tree, that life in the Home and Hospital for Crippled Children seems worlds away now. She’s quite the social butterfly in her retirement village in Florida, spending her days event coordinating the monthly soirees for the 1,300-member Timber Pines Community Newcomer’s club of which she is the proud president. She is also the founder of a Duplicate Bridge Group that meets weekly and she swims every day, practicing prescribed exercises to keep her Post-Polio Syndrome**** (PPS) at bay. Listening to her daily goings-on is dizzying in the best way, and the picture she paints makes me look forward to being 81. But in the magical descriptions of activities, she’s not yet told me how she feels about it, about how she and her polio afflicted body fit in it all. I interrupt to ask , “What’s it all like?” She knows exactly what I mean and, without much of a pause to think, she explains, “[There are] a lot of senior citizens [in the retirement village]. A lot of them. They’ll stop me and they’ll say, ‘Did you have knee surgery?,’ and I don’t really feel like I need to tell them my life story. But they’re incapacitated for the first time in their lives and they’re now over 65 and they just want to talk about [their disabilities] all the time. I don’t know what they’re looking for, but they’re coming to the wrong person. I don’t want to hear about [their] illness[es].” This is where she pauses, trying to find the right words behind the ones that initially come out sounding callous. Remember, though, that this statement is coming from the woman who, as an 8-year-old, told calming, hopeful stories to other frightened, ill children as their country was headed off to war. Giovanna is as empathic as it gets. Finally she elaborates, and her explanation begins to sound familiar. So familiar, in fact, that every person I’ve spoken with in the Redefining Disabled Project and most disabled people throughout my life have shared the same sentiment. It is one of wanting to be accepted, of wanting to be heard without having to defend the disability, without having to relive the trauma in the retelling of it, especially to people who don’t – can’t – quite understand the gravity of the experience. I’d like to digress here with a personal experience of mine to further illustrate this point (We’ll return to Giovanna in a moment).
Not long ago, a stranger took me by surprise by asking, loudly and rudely, in front of my children and a room full of people I’d just met and had hoped to make friends with, “What happened to your leg?!”, disgusted tone and all. In a millisecond, all eyes were on me (Well, most eyes. Some adults in the room about-faced and walked right out). The children in the room took the question as permission to trot over to me and start poking and prodding my prosthesis with their fingers, toys, and a baby carrot. Other adults began to stare and/or ask questions of their own. I felt vulnerable, on display, assaulted, and dejected. You see, I want badly to unveil the mystery behind disabilities and to expose people with disabilities for the important, strong wonders they are. I especially want to make that information accessible to children and any adult who’s willing to listen. That’s why I started the Redefining Disabled project in the first place. But I, along with all people with disabilities, do appreciate respect, space, and kindness. When I told the abridged version of my “disability story” (hint: it’s not a happy one), I was immediately met with comments that dismissed my painful memories that I’d shared with the group in good faith. Things like “Did you see that amputee on Dancing with the Stars? I bet you can’t do that”; “I broke my ankle once and, man, that hurt!”; “I bet your husband has to help you a lot”; “How do you take care of your kids?”; and “Do you have one of those cool scoop legs? Can you even run?” Pandemonium ensued as my dirty disability laundry dripped wet in the space between us. Not a single person uttered a “That sounds awful” or bothered removing the baby carrot from the top of the hydraulic chamber in my knee. I say with confidence to you, Dear Reader, that a little bit of compassion goes a long way. Asking questions is allowed. A general cognizance of your intention and its consequences are highly encouraged. For the record, situations similar to the aforementioned anecdote happen to me about every other week. Yes, it’s exhausting, though I remain hopeful that it won’t always be that way (hashtag Redefining Disabled 4 lyfe!). And, no, an ankle break or that old sports injury is nothing like having a leg amputated above the knee. For many reasons, it is nothing like it.
Which brings me back to Giovanna and her excellent analogy: “[They] remind me of New Money,” she says. “You know what I mean? Those people that made money who didn’t come from money and have to show off their newly made money? Like that, but I just call them the New Ill. They [the senior citizens in her retirement village] are the New Ill! I am inundated with people questioning me. They got a cane and they’ve got a new hip and they have a new knee and they got a new whatever… They’ll start in, and I’ll just swim away. I do realize that they have an honest to goodness condition, but they’re gonna get better. You know? They’re gonna get better. This…,” she motions to her legs, her chair, her body, “This is my life.”
*Giovanna and Jim were married in 1957 when they were 23 and 24 respectively. She sweetly tells me that she felt empowered, even liberated by her marriage to Jim, that it was their partnership that made her feel more able, perhaps because she felt unconditionally loved by him. My heart warms to hear her speak of her husband, and I find myself wishing that more goodness in the form of loving, supportive spouses makes its way into the world for everybody, but especially those with disabilities. We’re a tough breed to stick by, but to all you amazing spouses out there – you know who you are – Thank You. Giovanna elaborates on the special relationship she has with her husband, “I can accept help from my [him] very readily, more so than anyone else. [With him] I can do that without that guilt feeling. We have a great system going in that house, though. He’s Susie Homemaker.” And for extra measure, she offers up some advice: “Don’t drink. You can’t walk to begin with” and “Be thankful for the people that help you. Don’t degrade them…. Sometimes it’s hard.”
**The first three of her children, Michelle, Lauren, and James (JP), are each 18 months apart, and Paul is two years JP’s junior. As a mother with 2 children 20 months apart, I marvel that she’s not only survived but that her children absolutely adore her. Her youngest son Paul, who joined us toward the end of her interview, lovingly and emphatically shared a sentiment of his mother I don’t often hear of any parent, and it is personally heartening to see proof that a child’s love and a mother’s influence isn’t negatively affected by her disability (one of my most prevalent fears). He said, “She was never anything different. She was the most fun to be around. She still is. It was awesome. I can tell you that my childhood was the best of any of my friends’. We had the best time growing up.”
***In case you doubted Giovanna’s fortitude, know that aside from the polio, the Hospital and Home for Crippled Children, the wars, the everything, Giovanna also lost her son, JP, in a car accident in 1979 and one of her grandchildren (Paul’s son) at three months old due to a heart defect. Disabilities are difficult, but absolutely nothing in this universe is worse than losing a child. Still, with all Giovanna has endured, she still offers up these words of wisdom: “Accept each setback as it occurs. Keep a positive attitude and you will survive.
****”Polio, or poliomyelitis, is an infectious viral disease that can strike at any age and affects a person’s nervous system. Between the late 1940s and early 1950s, polio crippled around 35,000 people each year in the United States alone, making it one of the most feared diseases of the twentieth century.
Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. Most often, polio survivors start to experience gradual new weakening in muscles that were previously affected by the polio infection. The most common symptoms include slowly progressive muscle weakness, fatigue (both generalized and muscular), and a gradual decrease in the size of muscles (muscle atrophy). Pain from joint degeneration and increasing skeletal deformities such as scoliosis (curvature of the spine) is common and may precede the weakness and muscle atrophy. Some individuals experience only minor symptoms while others develop visible muscle weakness and atrophy.
Post-polio syndrome is rarely life-threatening, but the symptoms can significantly interfere with an individual’s ability to function independently. Respiratory muscle weakness, for instance, can result in trouble with proper breathing, affecting daytime functions and sleep. Weakness in swallowing muscles can result in aspiration of food and liquids into the lungs and lead to pneumonia.
The exact incidence and prevalence of PPS is unknown. The U.S. National Health Interview Survey in 1987 contained specific questions for persons given the diagnosis of poliomyelitis with or without paralysis. No survey since then has addressed the question. Results published in 1994-1995 estimated there were about 1 million polio survivors in the U.S., with 443,000 reporting to have had paralytic polio. Accurate statistics do not exist today, as a percentage of polio survivors have died and new cases have been diagnosed. Researchers estimate that the condition affects 25 to 40 percent of polio survivors.” -National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov/disorders/post_polio/detail_post_polio.htm
In the last couple minutes of our interview when we’ve already exchanged the struggles and disappointments of our respective disability stories with one another and have moved on to sharing the more laughable parts of being disabled, Giovanna recounts her stay in the hospital after the birth of her first child, of being limited by her polio-afflicted body, and the nurse’s flippant response.