You know those pictures of beautiful pools and secluded mountain cabins and gorgeous restaurants in incredible cities? They get shared on Facebook from time to time, and even more so on Pinterest.
Like anyone else, I look at those pictures and I want to go to those places. I want to sit on a hammock at the edge of the world. I want to hike into the mountains of Nepal and sleep in a tent suspended in air. I want to swim in an infinity pool. I want to write in a cabin in the middle of nowhere. I want to go back to the Tour de France and watch the race from the side of the road.
There is a problem, though. When I imagine myself in these places, it is natural for me to imagine my husband Chalupa with me. And then I start thinking of the logistics.
Would there be electricity to power his medical devices, like his CPAP and his nebulizer? Would we cook our meals over a fire with smoke that would make him sick? How far would we have to carry our luggage if we stayed there–far enough that I’d have to carry it all because his lungs wouldn’t permit it? Is that in a city where people smoke a lot of cigarettes? What allergens are in the area? Where would we go in a health emergency?
Right now, Chalupa and I don’t have the luxury of imagining big, amazing trips to fabulous cities or ridiculous locations. Aside from the fact that so much of our money goes to medical bills, our reality is that we don’t get to aim for amazing right now. Instead, our goal is normal.
When you or someone you love suffers from chronic illness, sometimes the extraordinary is just too much to ask for, and instead you find yourself longing for the average.
Right now, I would love for Chalupa, who suffers from a whole bunch of respiratory conditions, to be able to walk around long enough to go to the zoo with the kids and me. I would love for us to go out to dinner more often, or to the movies. I daydream about bike rides and walks around the block. What if we could tackle some home improvement projects on our own? Maintain our own yard instead of having to hire help? Go spend the day at Mounds State Park? I hate that people smoke everywhere, so Chalupa can’t go with us to the county fair or to an outdoor concert or even the to Savage’s, the bar we used to like that now has a smoking section right outside the front door. The State Fair is not an option–too much cigarette smoke, too much hay, too much dust. We couldn’t even risk the county fair this year, and I’m glad we didn’t; there were people smoke cigarettes in the crowd at the children’s Silly Safaris event, which was the one thing we had gone to see.
I want the ordinary. I want a day without an asthma attack. I don’t want to have to worry about when they’re harvesting corn, when they’re firing up jet engines that smell like burning rubber at the drag strip, who is burning leaves or trash in their yards, who has cats at their house, whether or not the guy who is giving us a ride from the mechanic reeks of cigarettes. I want my husband to be able to put sheets on the bed without getting out of breath, to bathe the kids regularly, to wake up in the mornings and not look at me with Emperor Palpatine eyes. It would be incredible for him to go to work during the day and not feel terrible, only to come home and stumble toward his medicine. I want to be able to do more than watch movies on the couch together.
As much as I would love to daydream about walking the Camino Trail in Spain with Chalupa or a vacation in New York or even a trip to Disney World that includes him, I have to focus on the present.
Every day, Chalupa and I strive toward normalcy. We long for the day when he feels good for the first time in eight years. We crave an ordinary day at home without asthma exacerbations or allergic reactions or painful breaths. I hope and pray that he can someday join me when I take the kids to do fun things. I worry that the kids will grow up thinking he didn’t want to join in, or that he didn’t want to be with them, because all of their memories of him are at home. I worry about keeping his condition from killing him.
“At least I have my health,” is such a commonly uttered phrase. There’s even a jingle on the radio that sings, “When you have your health, you have everything.” I don’t think that us healthy people realize just how true that is. I certainly never realized it until the person I married got sicker and sicker and his health became the dominating force in our lives. I’m not even sick myself–I have the benefit of being an incredibly healthy person–but chronic illness defines my life in so many ways.
If you and everyone in your life is healthy, you are incredibly lucky. Please don’t be dissatisfied with your normal, everyday lives, because there are people who would love to have that. To just have ordinary and normal and boring. Dream big, and imagine great things, and strive toward awesome trips and incredible experiences, but please, be grateful for what bores you.
We would give most anything to have your boring life.
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