I was very excited when I first started writing here. My little corner of the world. Somewhere along the way, life seemed to get in the way. Well, I’m determined to start again—any day is a good day for a new beginning rather than waiting and wondering what might have been.
When the pandemic of Covid-19 came along, it was as if some sort of switch had turned off. One day we could meet in person and then suddenly we all found ourselves physically isolated from family and friends. As if that wasn’t tough enough, we became isolated from the physical ability to be out in public, whether it was park visits or other sources of recreation or difficulties with finding food (and toilet paper) on supermarket shelves.
When I first created this space, I planned to write about what it was like to live my life mostly from my home, going out only if really needed to do so or if I really wanted to do a particular activity. It’s a bargain I’ve struck with life to keep me functioning as well as I can and with minimal pain. You see, in addition to having the rare disease fibrodysplasia ossificans progressiva, I sometimes get brutal headaches that can be, in some ways, even more debilitating than my daily life with FOP. (See my next post that is more specifically about FOP and living life with this extremely rare disease. Coming soon.) Particularly in the last few years, I’ve been able to manage the headaches a bit better by doing some things that seem to raise the threshold for getting headaches and help them be more manageable most of the time when I do get them. However, they still remain a factor in my life.
When social distancing became a thing (admittedly one we wouldn’t have chosen!), I had all of these plans to try to use the skills I’ve developed to be what I call “happy at home” to help others manage the time better. Within the first week (Okay, to be honest the first night!), I realized that what I’ve learned doesn’t even help my loved ones much of the time, particularly my mom who is my full-time caregiver. Like everyone, our household has struggled through this strange season. We muddle through as best we can. I’ve also realized that my world functions because of the flow of a small but mighty group of people in and out of my home. More than ever, I’m extraordinarily grateful for them and realize how blessed I am.
I know that some people are starting to venture out. Because of my extremely limited lung capacity and my disability, as well as my parents’ ages, we are not going out yet except to get food. We are not inviting visitors, including family (My sister lives nearby and is a nurse.) into our home. We have to wait patiently and hope for the best. If you are venturing out, be safe and be kind.
On Mother’s Day in the U.S., I’d like to close by saying how grateful I am for my mom. This picture was taken a couple of years ago when we went to the Sunday Market in nearby Franklin, on Mother’s Day.
Hello. My name is Sharon Kantanie. I'm 52 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.