When we end up being the main character in a story that we don’t really want to be a part of, it’s easy to be immersed in the negative. Going from the challenges of having Cervical Dystonia to the unknown horrors of going through medication withdrawals, this wasn’t a story I was prepared to write. Nor would I ever want to. “You’re an experiment!” one friend proclaimed. Unfortunately, she’s right. There aren’t any doctors who have the knowledge that spans the breadth of dystonia, withdrawal symptoms like insomnia and anxiety, and side effects. When it comes right down to it, I really am the only one who can write this story.
Even amidst such a difficult time, there must have been a few highlights. As my mom said, “Now we get to know each other as adults.” When you’re growing up, your relationship with your family is based on getting your basic needs met, the need to rebel as an adolescent, and the eventual hope that they will approve of your choices. But as an adult, how many of us get a chance to spend 8 consecutive weeks with our parents? I never dreamed I would, but I also never thought that I’d need them to take care of me during one of the most challenging times of my life. Yet, that’s exactly what they did.
During this time together, we’ve searched for the weekly Steele County Mystery Shot. We’ve listened to the big band radio show on KRFO Sunday mornings. Dad popped his mouthwatering popcorn, while Mom made vegie chili with her own secret ingredient. I’ve gotten to hear my mom read diary passages from 1961, in which she recounts the teenage romance between her and my dad. And I suddenly realized that my 14 year-old feline was very thin and frail. We’ve worked together to take him to the vet, give him fluids and get him to eat every day, which were all things I couldn’t have done on my own.
The other story I didn’t expect to tell was the one that involves my parents’ community of friends and acquaintances in Owatonna. Whether it be book club, Women’s Club, church choir or knitting, everyone has been so welcoming. Most of these people knew that I’d been having a hard time with my health over the last 6 years. However, none of them really knew the specific challenges I’ve encountered, especially these past couple months.
Last Thursday when I went to the knitting group that meets at the Methodist church, one of the women inquired about my condition. I finally opened up and told them about the insomnia, anxiety, sweating, mouth sores, my inability to think clearly and communicate, all the things that have made life so difficult since I weaned off Clonazepam. Then I shared my journey with Cervical Dystonia, since none of them knew what it was. There’s no way they would’ve known all I’ve been through, and it felt good to share that story with them.
Since my folks moved to Owatonna in 2001, I really haven’t known any of the people they’ve mentioned in passing over the years. For the past 2 months, I’ve gotten to know these people. I know who is related to who, and I can finally put names to faces. I’ve sat next to them in choir and chatted with them as they’ve given me rides. I’ve eaten breakfast with them at Hy-Vee and learned new knitting skills from them. A couple in their 90s gave me a tour of their home, overflowing with tales about all the traveling they’ve done together.
This kind of socialization normally isn’t a big deal, right?However, when you’re experiencing so many symptoms that make you consistently doubt yourself, leaving the house is a major achievement. Last week, I began to see that I was becoming a permanent fixture in some of these people’s lives too. A fellow alto told me I should move down to Owatonna and become a permanent member of the choir. I got my very own choir folder from the director. And it was becoming a regular routine to ask one of the choir members for a ride to knitting every week. Since moving back to my home in Minneapolis, I miss all the things I’d begun to look forward to and the people who have made me feel at home. Sometimes, in life, we have to search high and low to find our silver lining. But I’m convinced it’s out there. Somewhere.
My Hopes: No matter what curveballs are thrown at you, my hope is that you persevere until you’re able to identify that part of your story that brings you joy. You may not be able to see it in the midst of chaos, but if you persist, it will come to you eventually.
This is certainly my hope for me, as well. While it’s important for us to continue reaching out to people who have welcomed us into their circles during our hard times, it also seems essential to reach out to those individuals who are experiencing their own obstacles. Invite them in. Let them know you won’t judge them. Show them they’re not alone. Since those are the kind of people we need in our lives, those are the kind of people we need to be.