I've always believed there is a lot we can learn from others, and know that my viewpoint isn't the only one out there. As I'm about to turn 52, I'm sometimes more jaded than I was at an earlier age, and in others ways more content and sure of myself. I also know firsthand that the voices of people with disabilities aren't often heard because we are a silent minority sometimes dealing with health issues, social isolation, and other things that need our attention more than speaking up. So today, I'm turning my blog over to other voices.
The first voice I want to bring is that of Oliver Collins, who, like me, was born with the genetic condition fibrodysplasia ossifcans progressiva. He unfortunately passed away on April 21, 2021, due to a catastrophic brain injury suffered as a result of a fall from his wheelchair. I asked his mother Julie to pick one of her favorite pieces of writing from his social media postings. Ollie had recently started posting often to raise awareness of people with disabilities on Instagram and on his own blog. He also had a story posted on Love What Matters. In a strange turn of events, I had just told my own mother that she should read what he wrote there shortly before I came to the computer and learned he had died. Thought Ollie is no longer with us, I want his words to live on.
Do I wonder sometimes what my life would be like without a disability? How different my life would be without limited movement or chronic pain? Of course I do, sometimes.
But then I stop and remind myself of a few things:
1. the challenges that have presented themselves because of my condition have allowed me to cultivate quite inventive problem solving skills, to overcome the many, varied obstacles I face in my everyday life.
2. facing these continual challenges has helped make me a very resilient person, who is determined to not let anything stop me from doing whatever I set my mind to.
3. I have had the benefit of developing a unique perspective in how I approach life and everything that comes along in it. Yes, there are a lot of difficulties. But having gone through what I have, I now have a special appreciation for finding happiness in the small things and in the little, everyday victories.
4. going through this has bought our family a special closeness that really comes through facing obstacles together, and we are all stronger because of this.
We often say "the grass is greener" [on the other side], and compare ourselves to others or what our lives could be. But just because our lives could have been different, that doesn’t necessarily mean it would have involved less challenges, or easier challenges, or been any better as a whole. Our lives are special, and need to be appreciated for how valuable/miraculous they each are.
I also wanted to highlight another young voice that is worth hearing. This is Erin, whom I first encountered when she was two years old and her family was attending a symposium of scientist, doctors, and other families who share my medical condition.
It’s funny how I used to hate putting my hair up in pony tails because I was so self conscious of my tiny shoulders. People used to comment on them, which made it even worse. I used to be so self-conscious of a lot of things, and now I try to embrace it all. Cute sweaters from Target make up for it, but all it really takes is for you to see the big picture. In the end, there are a lot more things people could be staring at me for, and there are a lot of other things I should be worrying about instead of my tiny shoulders. I was so insecure that I refused to put my hair up, but at the end of the day what’s really the point of hiding our insecurities? Pony tails are freaking awesome and they keep my hair out of my face—which besides looking super cute, is a perk. I took that away from myself and for what? Truth is, looking back on all the things I used to fit over in my head seems silly now. Maybe it’s because my situation changed and there are more significant flaws that I find myself nitpicking over in my head. Who knows? There might be small things that irk you and make you feel insecure about yourself, and that’s okay. But years from now you might look back and think “I’ve changed and grown and I’ve embraced that part of myself and all it took was for me to see the bigger picture".
Now that Erin has shared her favorite post, I'll share one of my favorite things that she has written. I hope you will check it out.
P.S. I took myself so seriously in my twenties. I'm glad Erin has realized that humor helps!
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.