Numerous studies tell us that severity of disability often has little to do with the way a person perceives his or her quality of life, and that people with severe and even near total levels of paralysis (such as C3 or higher quadriplegia) are often just as happy and satisfied with their lives as those who are less disabled. Are these people in denial, or is happiness and life satisfaction — like love and contact lenses — all in the eye of the beholder? Here are some observations from those who live every day with the view from C3.
Most of the people interviewed here define quality of life as how they fill their time and who they fill it with. In other words, for them, quality of life often boils down to family, friends and what they do from day to day.
“We can still be ourselves,” says Bob Heinle, a C3-4 quad, speaking for himself and his wife Lisa, from Missoula, Mont. “We do what we like and what we want. We can still do what we did, like travel, go to films, do some shooting.”
Lisa further clarifies their quality of life: “It’s the people in our lives, the support we have, so many of our relationships that grew stronger after this [onset of quadriplegia], the way people accommodate us,” she says.
Barry Reed, a C2 quad, has lived on a vent for more than 25 years. Now 50, he, too, describes quality of life in terms of doing. “Being active, getting outdoors, helping others,” he says. He also ties quality to finances and severity of disability. “The higher the injury, the more limited life becomes due to equipment costs and government restrictions.”
Luke Harms, of Lincoln, Neb., also a vent-user (C2-3), finds quality in the relationships he’s forged and maintained. “I’ve got family and some very close relationships, especially with my dad. I’ve got reliable caregivers, including one who’s been with me for nine years. I’ve got God. I don’t get it [quality of life] from anything materialistic.”
Ditto for Donald Collier, 50, injured since 1981. He speaks of family, health and freedom, and safety of movement, rather than of losses. “I don’t worry about what I can’t do. I like my own company, I get good meals, I can get out of the house and go to the park.”
While longtime disability advocate Laura Hershey has dealt with spinal muscular atrophy since birth, the severity of her condition hasn’t put much out of reach. The Denver resident is living in Berkeley for a year with her partner while both of them pursue graduate studies. “Quality of life comes from love, friendship, creativity, exploration, learning,” says Hershey. “There’s also a substantial value inherent in simply being alive.”
A 1988 automobile accident left Carl Yorimoto paralyzed at C2 and vent dependent. He also speaks of other people. “Our friends and family mean so much. Many have ramped their homes. They treat me normally and are comfortable with some of my care. I have a social life and feel comfortable in the real world. I get satisfaction from feeling somewhat useful and productive.”
“We’re lucky,” his wife Bev adds. “People are very supportive and don’t let Carl stay home.”
The Hardest Part
Despite the studies, living with high-level paralysis still looks pretty tough. Just what is the hardest part?”For me,” says Reed, “dealing with the aging changes isn’t fun. In Wyoming, finding equipment, knowledgeable hospital care, and employment opportunities are all tough. Home health care and the government regulations [regarding different types of nurses and nursing assistants] for things such as suctioning or bowel care are real challenges.”Collier cites the constant challenges of dealing with a faceless bureaucracy, finding reliable home health agencies and aides who show up on time, and dealing with hemorrhoids and other age-related hassles. “I’ve been stuck in bed until 1 p.m. because aides didn’t show. I can’t work. My mind is loaded with ideas, but if I make much money, I lose too much [in benefits].”Harms sings the same blues.
“Finding home health care I can trust is a big problem. I’ve had people steal my wallet and pain meds. For some reason I worry about my catheter getting pinched. And then there’s that look – adults just stare or they’ll talk through my caregiver.”
“I can’t do for myself,” says Heinle of his biggest challenge. “I have to work through and rely on others.”Yorimoto says his fear of being a hardship and burden on his wife and family has been very hard to accept. “I’ve struggled to find things that make me feel productive,” he adds. “The computer has helped, and now I go crazy when it’s down.”
Problems come in threes for Hershey. “Whatever the disability,” she says, “people face substantial and constant physical and accessibility barriers. They generally deal with a lack of support, specifically with attendant care. Fortunately, Colorado’s consumer-directed care gives me a good deal of flexibility not available to others. We all have to deal with other people’s attitudes.”
Worries and Concerns
Heinle sometimes worries about losing his wife: “My life partner,” he clarifies, “not my caregiver. As far as disability is concerned, having to go back on a vent and losing more independence is a concern.”
“Mom and dad are aging, so I worry about their safety in doing things like helping me with transfers,” Reed confides. “Maintaining continuity of in-home care here is difficult — my only other option might be a nursing home.”
Hershey also speaks of the difficulty of finding and retaining reliable attendant care, then adds, “Managing the social and political realities of how people react to me can be a concern. So is respiratory health.”
“I don’t have all that many worries,” says easy-going Harms. “Maybe having a lower life expectancy because of the injury and the vent.”
Yorimoto is concerned about finding purpose, while Collier worries about small things, like minor home repairs, and large ones, like being taken in a scam, being robbed or falling out of his chair while alone. And there’s the fear of being a burden again: “I don’t want to put this on other people, my kids, my grandkids.”
The Worst Thing
Is the worst thing about high quadriplegia the vent? Loss of arm function? The seeming appearance of total dependency?
“I can’t be left alone, and I can’t physically do things like help Lisa with something, like fixing a fence or other handyman stuff,” Heinle says. “I can’t drive. And the chair’s so big it requires more accommodation.”
“The worst thing, whatever that means, varies from day to day,” Hershey says. “Some days there is no worst thing.”
“Late checks and tight money,” Collier says. “I haven’t seen an annuity check in almost five months. There’s no cost of living increase, so I’m still getting what I got 25 years ago. I could lose it if I work.”
Reed cites aging and declines in both health and mobility. “I had to quit working because of chronic pneumonia. I get sick from breathing cold air through the vent.” He complains of poor design of wheelchairs for vent-users: “They’re too tippy and unstable, which cuts into my independence. And the vent — people are afraid of the vent.”
“I miss walking,” admits Harms. “I think we all do. Walking and sex – when I was with my ex, all I could do was just lie there.”
“I worry about the vent getting disconnected,” says Yorimoto. “My wife calls me Paranoid Pete.”
What Others Get Wrong
Others’ attitudes and wrong assumptions were identified as being particularly troublesome.
“We live in a ‘disabiliphobic’ culture,” Hershey asserts. “I think we all internalize some of that stuff, some of the prejudice. There’s a pressure – sometimes from other people who are less disabled – to be as independent as possible, regardless of whatever risks you might have to take. My life’s not diminished because of the help I receive,” she explains. “I’m actually way more independent because of attendant care, especially if I control it. Those services aren’t the opposite of independence.”
“People think I have mental problems,” says Bob Heinle.
His wife Lisa concurs, “People often talk through me. Unless you’re living this, you don’t get it. Fortunately, we’re surrounded by great people.”
“People often talk through Bev, and sometimes I get treated like a vegetable,” says Yorimoto. “Many people see suctioning and think it’s a crisis. They don’t see I have a fairly normal life: going to ball games, movies, restaurants. They’re surprised to find I have my own van.”
Reed sees fear and a tendency to pigeonhole him according to common misperceptions as the nondisabled population’s biggest failings. “Kids will always talk to me, while their parents are hiding and listening,” he explains. “Adults are afraid to ask questions, so they stay ignorant.
Government agencies know me by the category and disability, not my name or who I am.”
Harms finds most people to be simply dumbfounded. “They don’t want to offend, so they don’t ask or say anything. I want to wear a sign saying ‘Hey, I talk!’ or they’re clueless, like the guy who said to me, ‘That must suck being in a wheelchair.'”
Collier hates answering questions regarding the origin of his injury (being shot by a cop who mistook him for someone else). “People automatically assume I was a bad guy. I’m still paying for a mistake the police made.”
Harms sums it up for most everyone: “What really rains on my parade,” he says, “is when people pity me. That’s the worst.”
What Makes Life Good
“Lisa, my wife,” Heinle says unequivocally. “Lisa along with family and friends and the independence we have.”
“You take on a new appreciation of life,” Lisa adds. “We can participate, be with friends and family, help others. That’s what we tell people when we speak at schools and colleges.”
Having and living a full life makes things good for Hershey. “It’s all good: the writing, the creativity, the learning. My partner makes life good. Our friends make life good. Nature makes it good.”
“God, family, getting outdoors, doing what I want,” says Reed.
Ditto for Collier. “God provides for me. I have my health, my mind, my grandkids, my family. I have freedom of movement. I can be a model for others — they appreciate what I do and what I’ve accomplished.”
“My dad makes it good,” says Harms. “My children make it especially good. I see parts of me through ‘my shadows’ I never thought I’d see. I want to teach them my mistakes.”
These views may not seem all that different from views held by those with less severe disabilities, although high quads often point to the necessity of more care and always needing to have someone else around, especially if a ventilator is involved. But Hershey puts those needs into perspective when she asserts she’s much more independent because of her attendant care.
Yorimoto adds: “With help and support, I think my quality of life is as good as most quads or paras.”
Other differences include outside circumstances, such as money and resources, geographical locale and social support.
Heinle’s disability was work-related and entitled him to worker’s compensation, while Yorimoto has coverage through Michigan’s generous no-fault auto insurance laws. A huge disparity exists between their coverage and the bare-bones protection of Reed, Harms and Collier.
Medicaid coverage differs from state to state; few states offer the same level of care or consumer-direction as Colorado; reliability in rural areas often fails to match what’s available in urban settings. Some states will fund 24/7 care only in a nursing home.
Lack of money and resources make such things as travel, concerts, movies, cable TV or even an occasional restaurant dinner out of reach for others.
Personal relationships and social support systems can become much more difficult to create and maintain as the severity of disability increases, changing the view significantly. Heinle, Hershey and Yorimoto are in long-term relationships and speak of the broad social support systems of their families, friends, former co-workers and their communities in general.
But the majority say their view is altered most by how others see and react to them and their hardware. Power chairs can be very imposing; vents are noisy, induce fear and often make communication cumbersome and drawn out; suctioning can appear to be a crisis; attendants reinforce the impression of dependency and helplessness.
As most of us are outsiders to the view from C3, we need to ask if what we see is real, or simply a projection of our long-held beliefs. If it’s the latter, we need to find a way past those beliefs to see the reality of someone else’s life. That is, after all, how we all wish to be seen.