March, 2019: After I returned from my nephew’s wedding in New Delhi, I became ill with a severe cold. The cold turned into a sinus infection, and I missed a total of three weeks of work over the course of two months. When I was at work, I’d start each day feeling adequately energized, but as the day progressed, I felt like a dimmer switch was slowly being turned down. Some days I would lose energy quickly, as if someone abruptly turned off a light.I’ve been chronically ill for all of my adult life, but this mostly slow although occasionally sudden loss of energy at work was a new phenomenon for me. I’m not all better yet, but I’m getting there. And I’m adjusting to this new way of losing energy. I try hard to pace myself at work, to not rush, and to take three-to five-minute breaks if possible. I’m doing everything I can to get my work done while modulating and conserving my energy so that I last through the day. This is not the worst health challenge I’ve had, but it’s a new one. I’m trying to be mindfulof it and to remain hopeful about meeting its new challenges.
When overwhelmed by tech problems, I hire a millennial. Instead of trying to install my back-up hard drive, I employed a friend’s grandson to do it for me. When I couldn’t master the basics of Instagram, I paid my thirty-year-old hairdresser for her time and assistance. I was born when Eisenhower was president. I’m very comfortable with computers and use a handful of programs continuously throughout my workday. But I’m often challenged when I have to learn the mechanics of a new program or app. Hiring a millennial for assistance is a nice way to get some extra cash into the hands of a young person, and they always know how to help.
Readers, I stumbled across this unpublished article I wrote about the holidays. I know it’s late in the season for this post, but I’d thought I’d share anyway in the hopes that a reader finds something in it helpful.
My guiding principles during the holidays are simplify, prepare, and prioritize. When we live with chronic illness the holidays can be especially stressful, but that stress can be reduced if we’re thoughtful about how we manage our time and energy.
I love a beautifully wrapped gift as much as the next person. But during the holidays, with multiple presents to prepare, I roll my gifts in tissue paper, put them in a gift bag, and call it a day. As long as the gifts look festive, no one cares if they’re wrapped or bagged. This helps me conserve my energy.
I begin my shopping in October. During the year I gather numerous presents that I’ve saved for the holidays. I take stock of my gift stash, assess who still needs a gift, and search the Internet for ideas. I pop into my favorite bargain store in October to stock up on inexpensive gift bags and boxes, and buy more than I’ll require, so I’ll be prepared for the unexpected. If I need to visit a mall during the holidays, I go as soon as the stores open, and I’m usually able to avoid the worst of the holiday crush and find a parking space.
If someone is too ill to shop in stores, there’s no shame in doing all of the holiday shopping on the Internet. The first year after Christopher Reeve’s riding accident, which left him a quadriplegic in 1995, he and his wife, Dana, did all of their holiday shopping through catalogs. (This was before people shopped on line.) No one would have blamed them if they’d skipped giving gifts that year. But they found a way to holiday shop, working around the actor’s extreme limitations. We can figure out how to work within our limitations too.
Many people like to make homemade gifts or bake during the holidays. I’m usually not up for a bake-a-thon, but still want some of my gifts to have a personal touch. I scout the weekly ads at my local markets and buy bulk candy when it’s on sale. Then I’ll purchase as much as ten pounds of a treat like chocolate covered almonds, and give them in holiday boxes or tins. These gifts are great for the office or an unexpected party.
None of my loved ones ever goes without a holiday gift from me. But I simplify the process as much as possible by preparing early, and being organized. I let go of small touches so I can save my energy for what’s important, which staying as healthy as possible while having happy times with my friends and family.
Make a plan
Cut corners where possible
On-line shopping is your best friend
Buying store bought food is OK
I’m a hardcore sugar addict. My addiction waxes and wanes, depending on the level of self-control I’m able to muster. When my addiction is under control, I’ll indulge in a sweet treat once every week or so, or not at all. But I don’t believe in deprivation. I have sugar in my morning coffee, and I employ what I call the two-bite rule. This rule allows me to eat two average-size bites of anything sweet. So if there’s a birthday cake at work, I’ll have two bites of it. Two bites don’t seem to trigger sugar cravings and I always feel as if I’ve indulged just a little. When I can implement the two-bite rule, it works well, and I don’t feel deprived. When I jettison the two-bite rule, I’m always striving to return to it.
My hearing is fine, but the way my brain processes sound is not. I have an auditory processing disorder. I clearly hear things that I shouldn’t, like the small beeping noise in the far corner of a room. Except I hear the beeping as if I’m wearing headphones with the volume on high. I call this my supersonic dog hearing.
Under certain other circumstances, I don’t hear things other people can hear well. I can’t hear anything but cacophony, for example, if two people are talking at once. When I don’t understand what’s being said, I try to figure out what the sounds I’m hearing are like. It’s as if I’m in a perpetual game of charades, but with indistinguishable vocals. Sometime this method works, and I can figure out what someone said. Other times I have to admit that because of the background noise or multiple speakers, I can’t hear, and I have to ask people to repeat themselves. I feel bad about doing this, but in order to live in the world, sometimes I have to request tolerance and kindness from others. This is simply life. I don’t like it, but I’ve accepted it.
My father wrote poetry most of his life. As his cognitive abilities declined, he didn’t give up poetry writing. Instead, he wrote haiku, a short form of Japanese verse. When he was placed in an assisted living facility, I found sheaves of haikus scattered all over his study. They were numbered, and he’d written one hundred of them. I thought Dad’s ability to adapt to his limitation without giving up a pastime he loved was inventive and admirable. It’s so easy to be upset and angry when our bodies fail us. I’d rather be like Dad and try to find creative solutions to those limitations.
I have a special fondness for the meanest dog in my apartment building. She’s a little gray thing and looks like a shaved Shih Tzu. However, she growls if I get near her. If I find myself on the elevator with this dog and her owners, I make a point to stand far away from them. At first her owners seemed embarrassed by her behavior. They assured me they were trying to socialize her. I’ve learned over time that this dog was found wandering alone in a canyon, starving. I’ve told her owners how much I admire them for adopting her. Dogs that snarl and growl are often euthanized in shelters because they’re considered unadoptable. I feel sad about the Growler’s previous life, but happy that two loving people took her in. It’s not her fault she was neglected and learned to fear people. I know, despite her growling, that she’s still a good dog.
In the 1970’s, California State Assemblywoman Marg Fong Eu ran a campaign against pay toilets in California. Her efforts succeeded, and now all public toilets in California are free. I have a medical condition, interstitial cystitis, which causes, among other things, urinary frequency. I use the bathroom more than any other person I know. As a citizen of California, I’m grateful to this trail-blazing politician for eliminating an obstacle to meeting my medical needs. Thank you so much, Marg Fong Eu! Your legacy is not forgotten.
When I lived in Boston in my thirties, I had a colleague who suffered from intermittent sinus infections. In warmer months, she would recover from these illnesses by going to Cape Cod and lying on a beach. She explained that she knew she wouldn’t be able to work and would need to spend her days resting. She told me she might as well rest in a beautiful place instead of at home, staring at her own four walls. She would sleep and read on the beach until she felt better. She was a social worker like me and seemed to be able to handle the expense of weeklong hotel stays. I thought this was a great idea, and I may someday try it myself.