KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I don’t remember much about my youngest days. Moments come back to me--bouncing with excitement while riding in the front seat of our automobile, long before seat belts existed. Watching fireworks at the fairgrounds. It was a looong time ago.
But one day stands out. I was about four, and the bigger eight-year-olds held a two by four beam higher than my head, and helped me climb up to “walk the tightrope”. They handed me a bamboo rake handle for a balancing pole, and I imagined myself as the beautiful lady I’d seen walk the tightrope in the circus. I made it almost to the end before I slipped. I fell—then, to my amazement and to the shock of the other kids, I caught the beam perfectly--swung back and forth a time or two by my fingers, and dropped upright. I walked away as nonchalantly as any four-year old can do.
That was a magic moment for me.
At some level this is what I’ve wanted to do the whole rest of my life--walk that tightrope gracefully. Sixty years later the rope seems higher. It’s not held by playmates. There’s a swamp below, and the balance pole gets shorter. But like all of us, I keep trying.
These days my challenge is composed of age and disabilities. I have multiple types of arthritis and take two meds plus pain pills to allow “normal” life activities. I’ve had fibromyalgia for many years. I have diabetes, high blood pressure, and high cholesterol, all controlled just fine by diet and more meds. I've been told I'm ADD. Then there’s heart trouble that required ambulance defibrillation a few years ago after I tried to tough out several days of 102-104 fever. (OK, so I'm sometimes not so smart...) I now take blood thinners and heart pills. I’ve also suffered bouts of salmonella, diverticulitis and mystery pancreatitis. That balance pole keeps shrinking when I need it! Sometimes I feel like one of those Wallenda pyramid tightwire acts where the walker has other acrobats balancing on his shoulders. If one of the riders shifts, the whole act crashes. If one health condition changes, the whole daily balance routine falls apart as well.
What I endure is minor to what many of you are dealing with, but relatively common to my age cohort. I wonder—how do we find our center of balance in daily living?
There are times I lean too far and push myself to the point of harm. Three weeks ago I wrestled a six-drawer solid wood bureau down the length of the hallway and into my bedroom, because I was tired of reminding my sons to move it for me. And I DID it. I felt great! But it was stupid, because just two months earlier a tiny bump to my knee filled with blood and I was in screaming pain and on crutches for weeks. I had no business moving furniture alone. I lost my center of BALANCE!
Other times I have tasks to do but am so fatigued it’s all I can do to stagger to bed for a nap. “Listen to your body,” health experts have told me in the past. "Don't ignore symptoms and warning signs--take them for the message they are". But when our bodies send pain messages constantly, how do we know which ones to pay attention to? Is that pain in our chest just a muscle spasm again, or a sign of heart attack? Is the pain in our gut a warning, or too much food at a birthday dinner?
Many of us don't have insurance or can't afford the copays if we DO have it...how do we decide what to stoically endure, and what should send us to the doctor or ER? How do we locate the center of balance?
I turn to centering prayer sometimes…a spiritual practice similar to Zen zazen meditation. It’s calming and energizing…but being A.D.D. the work to quiet the mind can be overwhelming. Sometimes fatigue wins and I just fall asleep.
So. How do YOU find a center of balance in your life? What is your balance pole? How do you know when to give things extra effort and wrestle a large piece of furniture into submission--and when the universe just calls you to heal and not get out of bed for a while? Do you often overreach, or are you fearful of trying again? What is it that helps you climb back on the tightrope for another try? Maybe we can share experiences and find a better way.
Note from your moderator today:
Don't forget to send me your jokes and humorous anecdotes about being disabled. Send stories to ulookarmless(at)gmail(dot)com.
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Peace
CJ