It was just about a year ago that I wrote my first and only post referencing the pandemic. It certainly wasn’t the easiest year of my life (our lives). It certainly isn’t over either, taking into account both the worldwide picture combined with the fact that it’s very risky for me to take the vaccine because intramuscular injections pose an enormous threat to people with my genetic condition—that is how my jaw fused when I was nine following a dental procedure.
So why am I saying, “It wasn’t all bad.” Well, I try my best to look at life in shades of gray instead of black and white. And I try to focus on the positive aspects when I can because it makes the more difficult things more manageable. Don’t get me wrong—there are also plenty of times where that doesn’t happen. Again, shades of gray.
Here are some things that made life more bearable this past year, as well as some lessons I’ve learned.
Card-making. In the last few years, I’ve enjoyed making hand-made cards. Well, truthfully I help instruct my mom and part-time caregiver to help bring these creations to life. It’s not always a process that goes smoothly, and it certainly isn’t the easiest way to send someone a card. (Or as said on a stamp set, “This card cost 10x more than a store-bought card because #onlythebestforyou” and “I came, I crafted, you’re welcome”, which in its own way appeals to my Latin scholar self—not sure if that was intended as a reference to "Veni. Vidi. Vincit...I came. I saw. I conquered." or not.) We are getting better at the process though. This was one of our earliest methods of coping with the the uniqueness of the past year.
Bringing back the blog. Okay, I haven’t been the most regular writer and hope to change that this year. Writing has always been something I’ve enjoyed, though as with card-making it takes time and a lot of thought. Practice is the only thing that makes it easier, and it allows me to express what I’m feeling, which is a valuable thing.
One Little Word. Since 2011, I’ve participated in an online class called One Little Word. Last year my word was play. Maybe not the easiest word during a pandemic. My album isn’t done, but I have done the prompts:) This year my word is rhythm. My guiding quote is, “Take heart. Breathe deep. You are free to find new rhythms here” by Morgan Harper Nichols. Without this word in my life, I might have never learned about a tongue drum—named for the carved tongue-shaped grooves that create its different tones. Anyone who knows me knows that I am an extremely thorough researcher. I looked into these special drums that require no musical skill, but I hadn’t purchased one—until this past weekend when I broke out of my home for my first fun outing, outside and masked (mainly because of lung restrictions that keep me in the high-risk category and the fact that there are usually lots of people at craft fairs). I was looking in a different direction when I heard a sweet sound that I thought I recognized. I turned around. Yes, a tongue drum. Yes, I bought one after asking lots of questions. In fact, I bought a slightly dented one, something I wouldn't have considered beforehand. (You really can’t tell unless you know where to look). And as an added plus, my mom finds it relaxing to play and the artist is making a special attachment that I can use to attach it to a belt and place it in my lap so I can play it myself. Apparently, he has done that before. I never would have thought of that either. You meet amazingly wonderful and talented people at craft fairs.
Mind-body work. While I’m not the biggest fan of the fact that social media tracks what we search and where we go to provide us with targeted ads, sometimes that does have an upside. I get chronic headaches. I can have good days, bad days, good weeks, bad weeks…you get the picture. My life is often controlled by either headaches or my attempts to keep them under better control. In summer 2020, I saw an ad for a pain-relief app, which uses educational audio, meditation, somatic tracking, and journaling prompts to help people with their symptoms. It’s really designed for people with no structural issues or medical conditions who nevertheless experience chronic pain. I decided to take a chance anyway because a. I don’t have headaches or pain all of the time and b. not all people with my disease have headaches or chronic pain. So theoretically I could gain some benefit. What would it hurt to try? The app helped a bit, but what has made a bigger difference was taking a 3-month online class in the fall, followed by working individually with a mind-body coach whom I found through one of my classmates. (I just began that journey in March.) It’s still very much a work in progress, but my symptoms didn’t develop overnight either. One of the best things to come out of the experience was a sense of camaraderie with my "classmates". We still meet once a month. One of my group members also has a wonderful blog on Facebook that’s full of insight. (And when she's able to travel again, I assume it's also full of stories of her walks across the United States to honor veterans.)
Grace towards myself and others. The pandemic has had the unfortunate downside of making it easier to judge other people. That person is living life in fear. That person is being so careless. I admit I took great offense to people saying I’m living my life in fear (not me specifically) because I and my family made what we felt was the best choice for us and stayed home except for grocery shopping, which seemed safe enough and allowed my mom to get out of the house once in a while. I admit that I had strong feelings when I saw people do what seemed like unsafe things at the time. I’m trying to do better.
Music. I occasionally go to concerts, though it takes a lot of effort and planning. Downtown Nashville doesn’t have lots of places for oversized vans with wheelchair lifts. And I have to hope I don't get a headache or at least hope it's bearable. The pandemic has been a true blessing. This past weekend I attended 4 concerts in a 24-hour period with better seats than I could have had if I had been there in person. An added plus is that the lead singer (now also a solo artist) of one of my favorite bands in college hosts multiple concerts a week, selecting a charity for each one and taking requests for songs. I also love that his “regulars”, known affectionately as squirrels because they can distract him from playing sometimes, chat with each other during the concerts.
Virtual traveling. Okay, for me this was actually a thing before the pandemic. I called it “virtual vacations”. I would research different areas—my favorite may have been the North Pole vacation suggested by my niece many years ago. Apparently, you also really can take a trip to the North Pole! In 2020, I got to attend my first family gathering of families dealing with my medical condition in 20 years, as the annual meeting was held virtually. There’s simply no substitute for the sense of community created by being with other families who understand exactly what you go through on a daily basis. Here is another one of my favorite pandemic “trips”: I went to Keukenof Gardens in Holland, which even during "regular" years is only open 8 weeks per year because it takes nearly a year to plan for its beautiful spring blooms. In 2020, no one was able to visit in person. If you love gardens, the videos are breathtaking.
Pets. I’m not sure who got the better end of the deal. Pets who had their families around all of the time or the people who loved them. Enough said.
Letting go. Of so many things, whether it was cleaning out my craft closet or the more hurtful feeling that I am a burden. That’s an understandable feeling when I am dependent on someone else to help me with nearly everything in my life. Instead I often needed to remind myself that much of life is both give and take and that there are things I can do to help others as well, whether it’s computer-related things (one area where I am independent) or helping bring out creativity in others. The last year has just been so tough, especially knowing that my family has sacrificed a lot to keep me safe during the pandemic. I know everyone was at risk to some degree, but not as much as I am with my limited lung capacity. That has really brought back these negative feelings in a way that I don’t usually dwell on. This song became my unofficial anthem of the year.
Meal deliveries and supporting small businesses. I think the past year has been harder on my mom than anyone else in my family. Getting meals delivered on days when she was especially tired was a lifesaver. It also helped us support local businesses. And as much as I love the convenience of Amazon, this past year was the year I really took a close look at how important local businesses are to a sense of community.
So what have you learned to appreciate more or what lessons have you learned this past year?
Hello. My name is Sharon Kantanie. I'm 51 years old. I have an extremely rare disease called fibrodysplasia ossificans progressiva. I believe in courage, kindness, and other things. Welcome to my little home on the world wide web where I hope to share information on the Kindness Matters Challenge, my life, and the things that matter most to me.