by Madeleine Parish
When I was diagnosed with Chronic Fatigue Syndrome seven years ago, my illness began to consume my thoughts and time. Questions taunted me like unrelenting harpies: What will I do? How will I manage? Who will take care of me? To try to keep fears and symptoms at bay, I studied up on my diagnosis, and chronic illness in general, became fluent in the language of disability, medical research, and insurance claims. I even started to find that, if I met someone new, my illness became my calling card. Not five minutes into a conversation with a perfect stranger, I would hear myself quoting study results, describing in clinical terms, suspicions about retro-viruses and other prospective pathogens. I talked about my illness all the time! Gradually, I noticed the glazed look in the eyes of friends and strangers as I reviewed the latest research findings, or described in minute detail the effects of my recent treatments. My illness had become my identity! Over time, I realized I would manage just fine, even within the framework of chronic illness, provided I took responsibility for my mental, physical and spiritual well-being, and made health and healing my first priorities. In doing so, I learned to change my attitudes, behavior, lifestyle, even my vocabulary. These five words helped me do just that:
Before chronic illness withered my penchant for independence, I took pride and refuge in self-reliance. Independence protected me--or so I thought--keeping me safe and invulnerable to rejection. Then, when I couldn't get out of bed for days, or when pain wouldn't allow me to negotiate stairs, I needed help. With my back against the proverbial wall, I saw self-sufficiency for the prideful defense it was, and that it no longer served me. So I dug inside for some courage, dusted off untested humility, and asked for help (PLEASE!) And when I did, I learned four things: First, some people are not only willing to help, they like helping and feel honored to be asked. Second, some people say no for reasons that have nothing to do with me. Third, whether people say yes or no, asking them doesn't kill me. (I admit to some emotional bruising when I felt rejected, but, hey, I survived.) And fourth, by asking without shame or embarrassment, I learn to help others when they need or ask. Eventually I found that the family and friends who wouldn't or couldn't help no longer bothered me, and I appreciated more deeply those who did. As a result of their responses, I began to get a different vision of myself, vulnerable, but still loved, respected and valued.
On, how I loved it at first! The way people scrunched their faces in sympathy when I said I had a chronic illness! I had what I wanted most: their attention. It didn't take me long to learn that, while I had their attention, I didn't have their interest. Unless, of course, they were chronic rescuers, people given to latching onto someone's misfortune as their mission, their justification, their hook into unhealthy co-dependency. Self-pity is a turnoff to healthy people, and it keeps ill people so focused on themselves and fence in by illness, that they fail to see that, outside the fence, life goes on. What is the best, most effective antidote to self-pity? Gratitude! Thinking myself grateful doesn't seem to work when I'm most shaky and self-pity is knocking for permission to enter. I have more success using gratitude as a wellness tool if I take action by writing a list of all the things I'm grateful for. The act of writing, plus the tangible, undeniable list seems to work better and faster than a mental checklist. The list doesn't have to be long or complex. It can be as simple as the fact that I can feel the sun's warmth on my face, or smell the honeysuckle's perfume drifting over my neighbor's fence. (That's not to say the big things, like family, friends, food and shelter don't count!) If I've cultivated an "attitude of gratitude" on days when I feel good physically, when I've accomplished something I've worked toward, and when I'm surrounded by loving family and friends, I find it easier to come up with a list when my symptoms are raging.
One of the difficult lessons I've learned through chronic illness is how to set limits on how much I allow other people, even those with good intentions, to interfere with my health. When I first got sick, I wanted people to like me even more than when I was well, because I was afraid my health challenge would ruin my relationships. That I'd be left alone and miserable for the rest of my life. Trying to prevent that possibility, I accepted invitations and kept commitments even when I was concerned they would affect my well-being. To avoid disappointing a hostess, for example, I said yes to a party, even thought parties, in particular, zapped my energy and required two or three days recovery time. Eventually, I learned to be more selective, and that I had choices. One, I could say a gentle but firm, "No, I'm sorry, not this time." Two, I could go and leave when I had to, and before I was exhausted. Three, I could attend just part of the party, or just stop by for dessert. It was important that I participate as much as possible, because I didn't want to lose touch with my social network. Over time, a few "friends" couldn't accept my limitations and stopped inviting me. Those who understood my necessary boundaries, though, stuck with me, and our relationships are that much stronger as a result.
Back in the '80s I had a boss who talked a lot about "creativity within constraints." When she did, I nodded doing my best to look wise, or at least intellectually agile enough to know what she was talking about. But I didn't. Sure, I knew what the words meant, but I couldn't apply the concept to myself. Creativity? That was easy back then. After all, I was young, healthy, enthusiastic, ambitious. But constraints? What were they? A few years later, illness taught me a lot about constraints and the importance of saying YES to the opportunities I found within limitation. My first months of chronic illness were spent in such pain that I hadn't time, energy or mind enough to consider creativity. Survival was my mode. Pure survival. But gradually my health began to improve. At first an occasional hour or two of feeling better, then back into the pit. Then the better times grew more frequent. Then one day I surprised myself by saying out loud, to an empty room, "I want to DO something. What can I DO?" One day I was bemoaning my conundrum to a friend. He listened patiently, nodded in all the right places, and when I finished he looked at me as if I really wanted to hear what he had to say. Sensing a moment of truth on its way, I sipped from my cup of tea and braced myself. "For years," he said, "you've told me how you've wanted to write. And all I heard was how you didn't have time. NOW YOU HAVE TIME!" Yes, I thought, HE'S RIGHT. But after I thought about it, I shook my head. I couldn't imagine sitting at a desk and typing for hours on end. But I could envision working on a laptop that could travel from table to sofa to bed, writing a paragraph or a page as my muse and body allowed. When my friend left, I picked up the phone, called a local office supply store, and ordered a laptop. Two days later it arrived. I signed for it, took it from the delivery man, and carried it inside, holding it like a sacred vessel that held my future. It was! Some days I couldn't think. Some days I could think, but not write. But some days I could tap out a few sentences then paragraphs. Then I wrote an essay. And another. A piece of fiction. And another. Chronic illness may have imposed new constraints, but I always have the power to learn to live creatively within them.
Desire, the Buddhas professed, is the route of all suffering. NO WAY! Desire got me promotions, new cars, nicer clothes, a better tennis serve. It's what keeps me striving, aiming higher, trying harder, running faster... Desire also kept me thinking that what I had wasn't good enough, that I wasn't good enough and that the only answer to "not good enough" was MORE. After I became ill it became apparent to me that, if I wanted to live at all peacefully, I needed to learn the difference between wants and needs. Because if I lived in a state of unmet wants, I would be not only chronically ill, but chronically miserable, too. The reality is that, even if I am in physical pain, or I don't otherwise feel or look as I would like, and even if my bank account is dwindling, or my wardrobe isn't up to snuff, if I stay connected to my spiritual source and to loving family and friends, my basic needs ARE met. I don't want to be sick. But I don't need to be physically well to be happy. When I hear the MORE MONSTER rearing his head, when I feel his self-effacing steam trying to wilt my confidence, it's important for me to say one word, clearly, firmly, confidently: ENOUGH!
A Delicate Balance: Living Successfully with Chronic Illness by Susan
The Chronic Illness Experience : Embracing the Imperfect Life by Cheri Register
The Art of Getting Well: Maximizing Health and Well-being When You Have a Chronic Illness by David Spero
© 2002 Madeleine Parish