A Rare Disease Day Reflection: We Aren’t Just Inspirational Tiny Tims

Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the world will celebrate Rare Disease Day, a day for spreading awareness about those living with rare diagnoses, who often have disabilities.

Since my disease is progressive and I spent most of my early life able-bodied, my only previous exposure to those with severe health conditions was through books and movies. Because of that, I thought a disabled person was always a sidekick, never a hero. Disabled people only seemed to serve as a kindly symbol of inspiration for the main characters.

So, in my mind, rare people with different diagnoses and disabilities were like Charles Dickens’ character Tiny Tim, with his little crutch. He had no role in the story besides inspiring others with cheery, cheesy cliches and reminding Scrooges of the real meaning of Christmas. He is never upset at his condition anywhere in the book.

I’m still surprised and often ashamed that I don’t have consistent hopefulness like Tiny Tim. My positivity ebbs and flows at different times during the week, more like a changing tide than a consistent river.

I thought all disabled people had an unlimited well of hope to draw from, as dependable as Tiny Tim’s crutch, or even as my own wheelchair.  

However, feeling inspired and inspiring isn’t a byproduct of disability. I have to fight against losing hope to Friedreich’s ataxia at least once a week. 

And I hate that battle. I’ve been in a wheelchair for more of my life than when I considered myself to be able-bodied. It should be easier for me to remain hopeful in spite of my rare disease by now, right? What would Tiny Tim think?

Maybe it’s the struggle to remain hopeful that matters. Maybe a positivity that waxes and wanes is more genuine than unquestioned optimism. It may be a harsh lesson to some, but anyone afflicted by some type of rare diagnosis or disability can relate: Hope exists only where we choose to see it.

I had to learn the hard way that people with disabilities are much more than inspiring fortune cookies for everyone else. We are not jolly, wise mentors all of the time.

We are the heroes of our own stories. Some days we can take on the world, some days we inspire everyone around us, and some days we curse at ourselves and wonder whether we can go on.

Our dynamic life is chaotic and beautiful, just like everyone else’s is.

On this year’s Rare Disease Day, I hope you’ll make an effort to reach out to the rare disease patients in your life. We probably are much more dynamic than you might think. We have good days and bad days. Ask us about them. 

We don’t always feel like Tiny Tim, so when we say this, it’s genuine: “God bless us, everyone.” Or something like that.

***

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.