Living Well: Illness and Travel, A Chance to Step Out of the Box


As I have written before for Global Genes, a strategy I have used to cope with illness is the creation of my own Top Ten List for Living Well, Even While Sick. One of these strategies, #7,  is ‘Step Out of the Box.’ This tactic wasn’t something I could do in the early stages of illness, when every moment of my life was a desperate search for diagnosis and effective treatment. Later, after I had assembled my health care team and found some treatments that were effective, I was able to make some helpful life style changes and gain even greater stability. For example, I learned I needed to rest each day, AM and PM, and that refusal to do this would result in a spike in my symptoms. I learned that those spikes were less frequent and less severe when I submitted to daily, enforced rest. The same positive outcomes were true when I complied with my medical protocol, altered my diet or made conscious judgments about the people I allowed in my life.

Once I’d made these changes, even with the positive results, life began to feel like a cage bound by discipline and restraint. I didn’t want to spend the rest of my life in a cage, so for me the decision to step out of the confining box of illness was an escape, if only for a little while. And while there were costs and consequences, I felt it was worth it. This conscious choice to break my own rules allowed me time to test my boundaries, spread my wings a bit and feel more alive and aware. This is quite different from living in denial of the seriousness of illness, or a futilely fighting it. Stepping Out of the Box is an infrequent choice, made with awareness of the risks and preparation for the consequences.

My first step out of the box moment had to do with travel. I decided to take a trip that would be more demanding than my everyday life. I also decided to travel alone, without the care and support from my husband I’d grown to depend on. I went home to Texas for a high school reunion and spent a long weekend around people who didn’t know I was sick, and didn’t need to know. I had endless girl talks, danced for hours to the Texas beat, stayed up late and walked the beaches of the Texas Gulf Coast. Then, predictably, I crashed—a little before I made it back to the safe harbor of home.

The day of my return home, I had a flair of pain, but felt I had to postpone strong medication until I could stop thinking so hard about times and tickets and baggage and gates. Once at the airport, I left my gate to go to the bathroom, then returned to the wrong gate and boarded the wrong flight home. Thankfully, the airline staff got me back where I belonged. Once home, it took days and days to refill the energy tank, and the flair lasted much longer and required more medication than usual. But still, with all this, I had a great time and I felt really alive for a brief, glorious weekend. No one knew I was anyone other than that healthy high school girl I had once been. Stepping Out of the Box was worth it.

 

Since this first foray I’ve stepped out of the box to accept a leadership role that asked more of me than my new normal, or a writing deadline that required me to comply to someone else’s schedule rather than my own. Each time, the choice has been both risky and informative. In each case, I’ve taken care to plan for the aftermath, clearing the calendar for the anticipated down time that would likely be the result. Sometimes I found that I was better at managing a more demanding task than I anticipated, so felt empowered to take on a bit more in my life. Sometimes I just felt freer for a short while. Over years, my life has generally expanded and I attribute this in no small part to the learning and the liberation I have gained by Stepping Out of the Box.

 

 

 

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Global Genes Comments

  1. Shilpi Bhattacharya says:

    Thank you for this wonderful and very helpful piece – living with a physical disability and working with people who don’t, I can understand and take cues from a lot of what you have written about. The only thing is that people like me cannot hide our disability from the world and pretend its not there or step away from the questions and the looks. But each disease has its own challenges and it is not easy for any of us. I am glad you are stepping out of the box!

    • Not sure, are you saying your disability is not invisible? Either way it’s a challenge to know when to speak frankly of the illness, to whom, and under what circumstances. It is a tricky thing. Best to you.

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