Having a rare and progressive disability and being a natural introvert haven’t made it easy to develop friendships. Fortunately, I have been able to develop a few close friendships in my lifetime that have made life much better. Unfortunately, in almost all of those cases, the friendships have been mostly long distance. First there was the friend I made when my first hip joint turned to bone in middle school. She was the lifeline I needed: distracting me from pain, carrying my books at school, and being my lunch buddy (Lunch is undoubtedly the worst time of day when you feel different, and yearbook day is like a million lunches.). A year later my family moved and, though she and I remained close friends, I no longer had anyone by my side on a daily basis that wasn’t part of my family. Later came the friend I made when she was trying to help a patient with the same rare disease that I have. Did I mention that she is a doctor in Brazil, which is no where near Tennessee? Much of our friendship developed online, though now we try to get together in person at least once a year. That hasn’t happened since 2019 because of Covid, but it hasn’t stopped us from dreaming and hoping.
I try to justify the fact that I don’t have a lot of friends by saying that dealing with my disability is a lot of trouble. Well, that is partly true. Nothing about fibrodysplasia ossificans progressiva (FOP), a disease that causes bone to form in muscles, joints, and other connective tissue, progressively and significantly restricting movement, is easy. At the same time, I believe I have a lot to offer as a friend, mostly because I can now see myself through the eyes of the few friends I have. I am very grateful for that.
Writing on the subject of friendship when you have a disability came foremost to my mind recently for two reasons. Recently I read a social media post written by a mom who wanted to find summer plans for her son who shares my same disability and was very disappointed and frustrated at the lack of options. Many other mothers responded with similar concerns. One mother, whose daughter is now an adult, wrote about those particularly hard years of adolescence, saying, “I lost faith and trust in so much, but never in my daughter.” It reminded me of lonelier times before I learned to keep myself entertained and stopped worrying that so much of the world and the people in it felt closed off to me. Then I read another post from a mom whose 8-year-old daughter was starting to feel different from her peers. The saddest part is that Isla, this young girl, is my hero. She does things you might never think she could do with her level of disability: riding and caring for horses, dancing and gymnastics, and living her best life. Her dream is to open a happiness store.
So, if you are reading this, I have a challenge for you. Look past the obvious challenges of someone with a disability—whether it’s a physical disability, mental disability, autism, or learning challenges—and make a new friend if you have the opportunity. And if you are a parent, teach your children that we all have certain strengths and weaknesses. Sometimes the weaknesses are just more visible and you have to look closer to see past them to see the good.
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.