Most of the time, what I write in this space is specifically because I write with the intention to post it. In this case, I originally had a different purpose. In November 2021, the support group for families dealing with the extremely rare disease that I have is having an online family gathering. As travel is extraordinarily difficult for me, I’ve been grateful for the opportunity to “meet” online for the past two years as in-person meetings were placed on hold. My last in-person event was in 2000, which feels like a lifetime ago. Earlier this year, I submitted an idea for a workshop called “Rhythms and Routines That Simplify Our Lives” to discuss how to make day-to-day life with FOP a little easier. My idea was accepted and I will be hosting a workshop with the help of several members of the FOP community. As I was gathering my thoughts together, these things came into my head.
First, there is no one-size-fits-all solution to life with FOP (short for fibrodysplasia ossificans progressiva). Families live in different circumstances with different resources. These are 10 things I’ve learned through the years that help me and my family cope and make living with a difficult condition a bit easier.
1. Help. Many of the things I do require help from others. A few things can be done independently, such as using the TV or the computer. Over the years, I’ve figured out that sometimes I’m better off letting others help me more because it allows me more time to do the things that I enjoy. That’s a place where we each have to figure out which approach works best for us. Another useful thought is remembering that, no matter how dependent I am on others, help can still be a two-way street. I try to make a special effort to help others in ways that I can—computer help, learning more about a topic and then teaching it, etc.
2. Schedule flexibility. I find that I work best when I have a schedule, but also schedule some built-in flexibility.
3. Space and “free time”. I find that my family works best when we all get some space to enjoy different things. That’s been harder during Covid-world, but we try. One thing that really helped a lot was when we took the big step of getting a part-time caregiver so my parents could have more free time. It’s been helpful for me as well because it gives me someone outside of my family to whom I can relate.
4. Change is necessary, but not all changes are inevitable. When I was growing up, my family had no idea what to expect from FOP because we didn't know other families who lived with my condition. Looking back, there are things we could have planned for better if we had known what the future might have held. One-story homes are awesome. Ways to avoid stairs are extra awesome. Roll-in showers are really nice. But you can’t predict everything that will happen. Don’t try!
5. Be okay with plans not working out and look for the good in some of the most difficult situations. If you are going through a really tough time, name 1-3 things each day that you are grateful for. I like to think of this as the “silver lining” rule. For example, all of my favorite people are people I wouldn’t have met if I didn’t have FOP. And I’m fairly certain that I’m a stronger and more empathetic person because of FOP.
6. Embrace the place where you are even when it turns out differently than you expected. When I was in my 20s, I pictured myself working full-time in a job I loved. Once my elbows became fused, it became more difficult to pursue my chosen career of teaching. Anyone who knows me will tell you that I always find plenty of things to do now—even though I spend most days at home. I have a better balance of different things in my life too.
7. This one is in honor of dads. Duct tape can solve everything. Well, not everything, but I use it every day when I brush my teeth and it was used for my original extension fork when I woke up and couldn’t bend my arm. It’s an example of how special tools don’t have to be fancy or expensive.
8. It will likely take longer than you think. I’m notorious around here for underestimating how much time it will take to do something. Maybe that happens to you too—in lots of little and big ways, from how long it takes to do a seemingly simple thing to how long it takes a flare-up to resolve.
9. Sometimes you have to invent new guideposts and change things up when old ways aren’t working.
10. Show love, kindness, gratitude, and grace whenever possible. It’s hard being dependent on others, and it’s hard on others for us to be so dependent on them.
P.S. There is no such thing as perfect or normal. And the world would be boring if there was!
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.