If there’s one thing chronic disease has taught me, it’s flexibility!
Here we are all geared up for our Yurt Excursion and I come down with an awful stomach virus that completely disabled me. There was no “grin and bear it;” I was so dehydrated and feverish I couldn’t even think straight, let alone travel. So, once again, we have to attempt to re-schedule vacation plans. A call is made to the “Yurt Man” and he informs us he has a strict “no cancellation policy.” Mind you, the money has already been taken from our account. And, for us, the cost of this mini-vacation is not expendable income! We worked and scrimped and saved to afford this get away.
Here marches in the messengers of “Doubt” and “Guilt,” followed closely by “Shame.” My husband, in his frustration, begins to get upset… “Why do we always have to cancel our vacation plans? Why do I even work, if we’re just going to have to throw away the money?! We should just stop planning anything, and then I will have nothing to be disappointed about!” Of course, I internalize these mutterings, and hear them as… “Your disease takes away all the enjoyment in life. If it wasn’t for you always being sick, we could go away. You and life with you are a disappointment.” And here is the conundrum of the chronically ill and their caregivers. He needed to be heard. And I needed to be reassured. And neither of us was wrong. I felt deep shame over (almost) always being the source of our need to change plans at the last moment. This time, it wasn’t even the illness we know, it was some random super bug either one of us could have come down with… it just happened to me. And he felt disappointment, and in that moment, couldn’t see a way through the situation. We both felt stuck.
Luckily we have a relationship built on trust and communication, tools honed through many years together. I retreated into myself for a while and he did the same. But I poked myself out of my protective shell and “risked” telling him how I was feeling. He was able to pause and reflect on what was really making him upset. I gave him the option of planning solo trips; I truly felt (and feel) that a compromise may look like us diverging on our separate paths at times. But, he was not keen on this idea. And let me know his disappointed lied in not being to taking a trip with me, not in the trip itself. Phew! Big sigh of relief, one I didn’t even know I was holding my breath on!
Once we both felt “heard,” we were able to reassess the situation and come up with alternative options. The bags were already packed so why not wait out the virus another 12 hours and see if things look differently in the morning? And, blessedly, they did! I was still only about 65% but it was a doable percentage of health! I am used to traveling “under par.” We called the “Yurt Man” and had another prayer answered. He told us we could extend our stay a night to make up for the night missed. In the end, we ended up getting even more time there (extra hours on our arrival and departure days).
Because we’ve learned flexibility in dealing with my myriad of conditions, we were able to view all sides of the problem and come up with multiple solutions. This is a gift of having chronic illness! Most people aren’t challenged on a daily basis to constantly reassess their mood, physical ability, needed accommodations, time, energy and scheduled plans. At times, this may feel like a burden. But when posed with an unexpected challenge, you have the resources to think outside of the box! That’s the gift.
Because we were flexible, I’ve just returned from four glorious days in nature. Yurting was our first “adjustment,” providing us an outdoor camping experience with the luxury of a raised futon bed and even indoor plumbing! And what a prize we received for searching for an unique vacation that would suit our needs… views of 80 acres all to ourselves; an abundance of wildlife (from Baltimore Oriels to Barred Owls to even an exotic blue hummingbird that buzzed right up each of our noses, to night coyotes and morning fawns… the list goes on and on!); an opportunity to take off the watch and forget about T.V.; moments to re-connect through Scabble and Yahtzee challenges and the nightly ritual of reading each other to sleep; and a chance for my first foray into Plein Air painting, interpreting the hills and mists and wildflowers from across my field of vision onto my canvas.
The blessing of replenishing the all of me ~ mind, body and spirit.
But the best gift of all? The self-knowledge that just because I have chronic disease doesn’t mean I have to stop living. It’s just one more example of how I am living differently. Recently, my mom said to me that she feared planning a trip together, not knowing “what my body could handle.” My gut response was, “I don’t know what my body can handle on any given day, in any given hour. But I also don’t want to let the fear of that keep me from planning anything in my life! People travel with all sorts of abilities and special needs. I can’t wait to live my life until I feel better. This is my life and I want to live it now!”
After this excursion, I truly believe those brave words I so brazenly declared!
LIVE YOU LIFE NOW! WHAT YOU HAVE AND WHO YOU ARE, ARE WHAT YOU’VE GOT. USE IT TO YOUR ADVANTAGE… NOT YOUR DISADVANTAGE!
Go out and adventure and then let me know what you discover about yourself and what you can do!!