What makes you rare? ( or how to overuse a simile)

Rare Disease Day is Saturday February 29.

The purpose of the day is to raise global awareness about rare diseases and the impact they have on their patients’ lives.

Living with a rare disease is like living with a self-adsorbed teenager.

Some days are difficult. Some days are achingly impossible. And other days brim with hope and joy and you think your teenager might actually gather their things and move out.

Rare diseases are confusing like a teenager who you love yet who thinks the entire house is their hamper and electric is free. (And yes, like a teenager, I’m getting lazy with my similes.)

Here’s what learned over the last six years with my disease: if you want life to change you must find the courage to change your attitude.

My disease is here to stay, like a lazy teenager (and a lazy simile!), so I have to change my attitude.

I have to be the bigger person.

In public, I try to keep my disease in the basement, like that teenager. I’m aware they’re down there but in the presence of company— they can stay out of sight for a little while.

There is a hole in brain and there is nothing I can do about it.

I can’t take a pill. I can’t plug it. I can’t hope my brain decides to suddenly grow.

All I can do is change the way I feel about the hole…and I’m not talking about that self-adsorbed teenager again.

This year, Rare Disease Day participants are being challenged to answer the question, “What makes you rare?”

It’s important question that, I think, should not be limited to those afflicted to rare diseases.

You and I are extremely rare and very valuable. You and I have a voice and perspective and laugh and cry that no one else has. You and I are special. So what if we’re not in mint condition. We’re a little bent, our corners torn and we sport tuffs of gray hair. So what?

Our value lies in this truth: other people need us. No matter our condition, no matter what we think of ourselves– other people need us.

And that is what makes you and I are rare and valuable.

Like a teenager who picks up their clothes and turn off the light.

Be well,

Jay

Cool News… My nonfiction story, “The Day I Learned I Could No Longer Jump ( or Learning to Fly)” will be published on the Coachella Review blog on March 6.

Nestled in Coachella Valley, California (near Los Angeles), the Coachella Review is an literary publication that publishes book reviews, poetry, one-act plays, fiction and non-fiction.

“The Day I Learned…” is an important story to me. It was the first time, through writing, I attempted to capture the frustration and slivers of hope you feel when living with a rare disease. Hopefully, being published on a larger platform, will offer more people, especially those afflicted with a disease, some comfort and the all important sliver of hope.

My 2020 resolution is to learn more about and practice more forgiveness. There is growing research that forgiveness is the key to a happier and healthy life. Check out my forgiveness journey and share with someone you think may be interested.

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