The View From Here

By Natalie Shahinian

Living with a chronic condition compels one to see the world in a different way. It can force you to filter the static that is so much a part of life to its very basic elements. The change in perspective doesn’t always come easily, but it is invariably what puts life into focus.

About a decade ago, almost immediately after I was treated for Hodgkins’ disease, my body fell apart. It took years to diagnose the debilitating pain and fatigue that followed as fibromyalgia, and when I finally had a diagnosis, it didn’t really matter anymore. I was too sick to care. Suddenly, my perspective on life looked less starry-bright and more earthbound. The horizon line, where we can see ourselves in the “big picture,” can appear a lot lower when one is constantly looking up from one’s bed.

Having a chronic condition or disability can make a person’s outlook resentful, intolerant or depressed. It may also be thoughtful, reflective or appreciative. Maybe it has been all these things at different times, becoming part of the background of your day-to-day life. Finally, exhausted by the emotional turmoil, you might ask yourself, “What is it all for?” “Why does it matter?” and “Who cares anyway?” When questions about how or why you are living start taking up your days and nights, it is usually a sign of a kind of death. What is it that’s dying? Your old self. The way you view the world. Your understanding of how you fit, or really don’t fit, within the status quo—essentially, how you perceive yourself.

Often, how easily and quickly people accept themselves and their new life depends on the nature of their disability or chronic condition, their participation in and beliefs about work, education and family, and their relationships with others. That’s not to say that if your condition is manageable, your views unchallenged, and your relations amicable that you will have an easier time of accepting yourself. I’ve found that it is the way in which we listen to our inner self—mindful of our surroundings and resisting any sense of entitlement we feel should be afforded to us—that determines how we proceed. For some, this listening is second nature; for others, it must be learned.

Ulianna is a former teacher and librarian in Toronto. She was born with cerebral palsy that mainly affected her legs. From an early age, she has been unstoppable—what friends perceived early on as a stubborn streak was Ulianna’s determination to live independently. She started walking by pushing a doll carriage and worked her way to crutches, braces and eventually to a single cane. (Now, she uses one cane in the house, two outside and a manual wheelchair for greater distances.) She was one of the few people with a disability to attend teachers’ college in Toronto at the time, and had a long career teaching English.

Ulianna recognized who she needed to be and how to get there—she trusted her inner, intuitive self from the beginning. She believes that, having been born with a disability, she has an advantage over people who acquire one later. “They are suddenly deprived of things that were part of their lifestyle…it’s a major jolt to their mental, physical and emotional being.”

Ulianna has a point. Abe was a new dad and one of the top employees at the tech company where he worked, overseeing more than 80 people. He worked out several times a week, went out with friends and bowled competitively. He felt emotionally well, even though he knew something in his body didn’t feel quite right. Later, he says, it would be a car accident that triggered the illness.

The accident caused possible nerve damage and sleep deprivation. He also has fibromyalgia. “My strong mind and body slowed down the effect of the trauma,” says Abe. “However, it was not strong enough to overcome the final net effect or fix itself.” Abe became sick and depressed. He felt doctors viewed him as an income source rather than a person in need of care. As Abe recounted his story to well-meaning family members and friends, they reminded him of how “terrible” he felt. Frustrated with dealing with a world that seemed like it was against him, Abe retreated into isolation, as many people with chronic conditions do. Time alone helped Abe look for answers in ways he didn’t expect, such as attending a pain management support group and eagerly reading and re-reading the Bible.

Richard Ryan and Edward Deci, professors in the department of clinical and social sciences at the University of Rochester, are leaders in the study of motivation and personality development. Their Self-Determination Theory investigates three related human needs: competence, belonging and autonomy. An article in American Psychologist says that Ryan and Deci claim, “When these needs are satisfied, personal well-being and social development are optimized.” Ryanand Deci also point out that some social contexts support autonomy, competence and personal relationships, while others stand in the way of individual growth.

Ryan and Deci’s theory serves well for the average person, but how does it apply to people with a chronic condition or disability, whose ability to do can become severely scaled back? Their sense of belonging with family, friends and co-workers can turn sour if they no longer feel welcome. Also, while relationships can provide love, care and companionship, they can interfere with one’s desire to be independent and grow. Therefore, the model to achieve personal wellness, the balance of doing, belonging and being, is implicitly rooted in the belief that an individual’s worth and happiness is based on achievements, which must be recognizable and tangible. This is certainly not the recipe for someone with a chronic condition or disability.

Recently, I had the pleasure of reading a manuscript by my acquaintance John Hardy. He writes about “the game” that exists in society—the differences between the insiders, or the people who participate, and the outsiders, or those who do not. When people look at each other as a set of attributes—for example, intelligence or beauty—instead of a unified whole being, he says, we begin to define one another by these qualities rather than simply using them to describe. This poses an issue for people with chronic conditions and disabilities, since their years as a worker or a parent or in other roles are often interrupted or altered somehow. As a result, society alienates the people who cannot “do,” and grows impatient with the ones who do slowly, one task at a time. Left out and cut off, people with chronic conditions and disabilities often become tired and ill in their need to be accepted and to belong to a community of compassionate people.

Jean Vanier, founder of L’Arche, international communities of people with developmental disabilities, devotes a chapter to the effects of the supposed superior group mentality in his book Becoming Human. Vanier claims that some of the problems arising within groups are due to their incapacity to see or admit to any possible errors or faults within the group, their closed-up set of ideas, theories and values, and their promotion of self-centred attitudes and motivation. Although Vanier’s accounts and observations about society are bleak, he offers other ways to look at and find groups that meet individual needs. According to Vanier, signs of a healthy group include an openness to people in need of help, a mission to serve others and the ability to see its own flaws. Under such supportive circumstances, a person with a chronic condition can benefit from the emotional security and structure of a group while maintaining his or her own sense of independence and free-thinking.

Jane lives with asthma, hypothyroidism, arthritis, fibromyalgia and a blood disorder. Although she was under a lot of emotional and workplace stress, she didn’t think her body’s cry for help was anything more than the result of having too much on her plate. Eventually, Jane stopped “thinking the process was temporary” and gained a better understanding of her being. Once she accepted her situation, she says, she could redirect her intellect and passion to imagine and create the kind of life she wanted. “I learned quickly that equilibrium and balance come from knowing that this isn’t the life that I’ve chosen, but it’s okay, that I can work from this position. That it just is and I’ll be fine.”

Jane sought out people who were also exploring larger issues and gained new perspectives by hearing their experiences, something she had never done with such intensity, intent and curiosity. She also found herself by rediscovering her love for art, journaling, travelling and reading philosophical writing, all of which helped create balance in her life. “Getting older, with all its chronic conditions, means being a citizen, not a pioneer like in your first part of life,” says Jane.

In his book The Force of Character and the Lasting Life, Jungian-inspired psychologist James Hillman discusses the outlasting years, the years beyond youthful, physical prime and sensory acuteness, as confirming and fulfilling character. He asks readers to consider aging an instrumental process in being human, intended by the soul. Once the reader adopts Hillman’s idea of character requiring additional years to reveal itself, his views on aging, from “Muddled Agitation” to “Heightened Irritability,” adopt a kind of lightheartedness that allow for anyone to help feel a bit at peace, even fortunate, for having what he calls the “revelation of the body’s wisdom.”

In some ways, people with chronic conditions and disabilities experience a sort of accelerated aging process. They learn that negative experiences teach them how to survive, and that positive ones teach them how to live. They notice the patterns in their life and create, as Jane says, “the inner architecture to help with the outer architecture.” Some, like Abe, have discovered they can be an acting part of society just as they are. Others, like Ulianna, see the lighter side of life and laugh. A major challenge is that the chance to use this wisdom happens earlier than it does for the mainstream population, which may dismiss them as unproductive or disabled and fail to take advantage of their perspective simply because they don’t fit in with society in a familiar way.

Psychiatrist and author Elisabeth Kbler-Ross suggests in Life Lessons: Two Experts on Death and Dying Teach Us About the Mysteries of Life and Living that time is not linear. “In nonlinear time, the past, present, and future may all exist at the same time.” For people with chronic conditions and disabilities, this notion of time as the everlasting present defines what it is to be human. The present is the only certitude that can carry love, trust and patience even though, as Kbler-Ross points out, some things in life happen when you least expect them and not at the best time. Even though our lives may feel upside-down, we are actually where we’re supposed to be, and our destiny will take care of the rest.

I find myself repeating Kbler-Ross’s words when I feel the need to reassure myself about where I am in life. I’ve managed to stop worrying about how things will come together in my world, even though, in a small way, every day, I am reminded of how I got to this point. What changed? The way I see myself.

For the first time in a long time, being me, in this body, is not so bad anymore. I no longer let my condition define me. Instead, I let it guide me to the places and people I would never have had a chance to meet otherwise. I let it determine the things that matter in life, strengthen my best relationships and open my heart to new experiences. I let it show me how to connect with myself and figure out who I want to be. And all the while, I let it teach me to be patient with time and to trust it.

Looking at the world from a lower vantage point has its benefits. It allows one to look up to the wonders in life instead of looking down on everything and everybody, including ourselves, as some of us spend our lives doing. Somehow life looks large and quite spectacular when you allow your idea of what it is to be human to become elastic, stretching your horizons, whatever that means for you, from every angle, even from underneath the covers. It’s probably the only perspective we as humans can ever try to reach...can ever try to be. Have faith. Look inside of you, and just be.

Natalie Shahinian is 15% writer, 15% illustrator and 80% water, which is maybe why she’s always trying to give 110%. She is working on a yoga book for people with chronic conditions.

EXPLORING FURTHER

BOOKS

"The Tunnel and the Light," Elisabeth Kbler-Ross, M.D. (Marlowe & Co.)

"Be Here Now," by Ram Dass (Three Rivers Press)

"Heal Your Body," by Louise L. Hay (Hay House Inc.)

FILMS

"Dying at Grace" and "Memory for Max, Claire, Ida and Company," directed by Allan King (www.allankingfilms.com)