How I Learned to Appreciate the 'Little Things' After My Husband's Diagnosis

One habit that I’ve carried over from my younger days is keeping physical photo albums. Even though digital cameras have eliminated the need for them, there is still something about printing out photos on my fun little printer and compiling the best ones into chronological order in book form that relaxes me and helps me reflect on my life. I fear photo albums that you can hold in your hands may one day be a thing of the past, since it seems fewer and fewer stores carry them these days. Still, I keep up with this hobby. One reason why I like it is because it reminds me of the beautiful things I get to witness on this earth despite the challenges and drudgery of everyday life.

In the past few years, life has gotten more challenging for me than I ever imagined it could be. Several years ago, my husband Joe was diagnosed with Charcot-Marie-Tooth (CMT) disease, a rare hereditary peripheral nerve disorder. Don’t let the name fool you; it actually has nothing to do with teeth. Months of debilitating pain and fatigue led up to this diagnosis. Before this, Joe had been fairly healthy, and we had both been fairly active and enjoying the fairly normal lifestyle of a 30-something suburban couple. While this illness has changed Joe’s life drastically, it has also changed my life too. I’m not going to try to speak to Joe’s experiences, but I can speak a little bit about my experiences as a spouse and caretaker.

For one, I am often so busy and tired—between working full-time, running the household, and providing support to Joe—that I often don’t have the energy to reflect on how my life has changed or how I’m dealing with these changes. I’m not entirely sure if this is a good or bad thing. Maybe dwelling on these things is too much of a downer. On the other hand, I think I should try to be mindful of what I’m going through and take stock every once in a while to make sure that I’m not reacting in negative ways, such as taking my frustration out on Joe or neglecting my own health.

So although I may still be processing what is happening and adjusting to our new lifestyle, one thing I can say for sure is that our world has gotten smaller. Joe had to drastically cut down on his work as a freelance reporter. Because of chronic pain and fatigue, we now only rarely do the things we used to regularly enjoy, like going on hikes, eating out, going to the movies, or shopping for vinyl records. Even on days when he feels halfway decent, Joe’s problems with balance mean there is always the risk that he could fall. But probably the hardest change has been losing friends. I can’t say why, but many of our old friends have decided to stay away. On bad days, Joe’s world consists of the bedroom.

I’ve always been a big reader, and ever since Joe’s diagnosis we’ve both been trying to learn all we can about CMT by consulting the good old internet and joining a support group. Of course, I’ve come across my share of advice for caretakers, which mainly centers on the importance of the caretaker taking time to care for themselves.

In the summer of 2016, Joe and I spent a week in Iowa City (not a particularly exciting destination for us, since we’ve lived in the Chicagoland area) so he could get back surgery at the University of Iowa Medical Center, in an attempt to ease some of the horrible CMT-related nerve pain he’d been dealing with.

I spent the week driving between the hospital and the hotel, subsisting from food from the hotel breakfast buffet and the hospital cafeteria. Of course, I’m not even getting into what Joe was going through at the time, namely a 10-hour surgery and a several-day recovery period in the hospital.

I knew I should make a point to take breaks from being the supportive spouse and to do things for myself. I took short walks in the downtown area, visited a favorite bookstore and noodle shop, and sometimes just sat outside in the hospital’s courtyard.

It was in this courtyard that I encountered a baby rabbit hanging out in the foliage. The rabbit didn’t seem to be disturbed by my presence, so I played around with Joe’s new cellphone camera and took some pictures of the rabbit and the flowers in the courtyard, getting acquainted with the camera’s zoom function as I tried to get close-ups of bees pollinating the flowers.

Once we returned home, the rest of that summer would be dedicated to Joe’s recovery from the surgery. Because sitting for too long often triggered his pain, going out was limited to places that were just a short drive away.

I still took pictures that summer, though, and continued with my usual ritual of compiling the highlights in a photo album. While the subjects of my photos might have seemed more boring than the photos from our pre-CMT years, they still held meaning for me. They were simply different scenes that struck me as beautiful at the time: cotton candy clouds at sunset, the deep hues of a native bouquet from the farmer’s market, or the little pieces of nature I found in that hospital courtyard.

I didn’t want to just write off that whole summer. Even though my world has gotten smaller, it is still full of things worth paying attention to. In fact, I’m now able to look at my world through a sort of magnifying glass, and the beauty of the little things has become more intense and undeniable. My photo album from that “lost summer” reminds me that even though my husband has an illness, we both can still encounter things that are beautiful and deserve to be remembered.

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