Scariest Words in the Dictionary

Yesterday morning my husband fell off his daily tightrope and landed on his face. Not a literal tightrope, but it might as well be for those of us who traverse the everyday balancing act of living with a chronic medical illness.

I woke up to a crash and the heart-wrenching sound of my husband having a seizure, flung myself out of bed and raced into the living room, where I discovered him twitching in the crevice between the couch and the coffee table. I knew immediately what was happening and leapt into action. Called 9-1-1, moved the coffee table away, secured the cats in a room, turned on the porch light for the EMTs in the predawn darkness and waited.

It has been a long time since Mark has experienced a diabetic seizure – always a result of his blood sugar dipping dangerously low towards slipping into a coma while he is sleeping. There was a time when we went through this ordeal a couple of times a month and we began to greet the responding firefighters on a first-name basis when they walked in the door. But it has been a long while.

And suddenly I was reminded while watching my husband, feeling so helpless, at how treacherous the tightrope really is. One wrong step, a slight shift in our balance, and off we fall without warning and without anything to grasp on the way down.

This episode thankfully ended like all the others – the seizure stopped, Mark regained consciousness, and the EMTs helped me stabilize him. After a couple of packets of that sticky sugary energy gel, two big glasses of orange juice, a sandwich, and a couple pricks of his finger to check his blood sugar, Mark was back to his normal self and the EMTs were packing up their gear. The biggest miracle is Mark did not hit the coffee table on his fall to the floor. Not even one single bruise.

Over 24 hours later and I am beginning to breathe a little easier.

But I keep seeing that wobbling tightrope we both walk – me with my fibromyalgia, Mark with his diabetes. Most people would fall asleep on the couch and wake up the next morning, a bit disoriented to discover themselves still in the living room, but otherwise okay beyond the discomfort of sleeping in jeans. For Mark, it’s potentially dangerous. Is he just exhausted or did he take too much insulin and now he’s groggy from a low blood sugar?

My tightrope is lower, a bit more secure, but still scary – why do I wake up one day full of energy and the next completely drained and dragging my fatigued, painful muscles through the day? The unpredictability of what we face can be terrifying.

I look at our tightropes, both different, but so unstable, and I know why everyone keeps saying I am so brave for travelling alone. I know why my husband prefers to stay at home. I know why most of us with chronic medical conditions stay within our zone of the familiar. We all have a tightrope and we all ask ourselves – what if?

What if I have a flare of symptoms while backpacking through Asia? Experience a seizure in a strange hotel in another country? Lose my diabetic needles in Russia? Suddenly can’t move my muscles while on a hiking trip in Greenland?

What if?

Scariest words in the dictionary.

I don’t think of myself as particularly brave. If anything, foolish. I try to be smart and plan for everything. But the tightrope isn’t always predictable. I thought of this even in the remoteness of Iceland, while on the peaks of euphoria. I distinctly remember thinking while hiking to a mountain summit in Skaftafell National Park – what if I suddenly have a flare and begin to lose my sense of balance? This while hiking up a steep mountain, nothing between me and the glacier far below.

What if?

I can’t live that way. I travel because I want to banish “what if”. I want to laugh in its face and yell, “You can’t rule my life! You don’t define me!” The irony is that very question is driving me to travel, at the core of everything I do. The more I run away into the world, the more it pushes me to new people and places. It is why I am me.

What if?

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About chronictraveler

Chronic Traveler starts as a dream, one that I thought I had lost, but that has slowly changed into a mission to realize and live that dream every day. In December 2007 I became seriously ill and the doctors did not know what was causing my illness. I had to stop teaching as my life tumbled into a never-ending nightmare of doctors, hospitals and tests. Finally, in May 2008 I was diagnosed with a chronic condition - fibromyalgia. I was only 26 years old at the time. I have had to give up teaching, and now work part-time at a performing arts center as I learn how to manage my condition and improve my quality of life. What helped me through the months of uncertainty and sickness, and continues to inspire me, was a new focus on what truly mattered to me: family, friends, gardening, the arts, and especially travel. I have always fed my soul by traveling, ever since I first stepped off the plane at age 16 in Kathmandu, Nepal to help with an orphanage's building project. Meeting new people and experiencing how they live and how they view the world infuses my life with a richness I was so afraid I would lose when the doctor first said, "You have fibromyalgia". This blog is my story, as I begin to forge a new path. I am embracing my life as it is, with the fibromyalgia pain and fatigue, and learning to do what I love regardless. It may mean I have to go slower and take more naps or breaks! But I am determined to learn how to travel and experience the world, and hopefully what I learn will help others like me who believe their medical condition stands in the way of their travel dreams.
This entry was posted in Living with Fibromyalgia, travel with fibromyalgia and tagged , , , , . Bookmark the permalink.

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