Turning the Rare Disease Stones on My Back Into Balloons

I was listening to a sermon on Sunday morning, well only half-listening really, but the preacher made an interesting comment, causing me to listen a little more intently than I had been.

(Note to self: Having church at home requires discipline and means not having your phone in your hand, reading posts from members on your FB support forum!)

He said something like, “We need to turn the stones on our backs into balloons.”

The image for me was a powerful one. I immediately thought of the combination of chronic illness and my idiopathic rare disease as being a huge stone on my back and shoulders.

I visualized not just one stone but a cluster of stones, with each stone representing a different diagnosed disease or a set of symptoms.

As I imagined those stones, I could feel their heaviness. I could feel the weight of all I’ve lost as a result of my declined health and disability. I could see how stones had been added with each health crisis over the years.

In my mind’s eye, these stones were grey in color. They were of no particular shape, slightly rugged, but mostly smooth. I think the smoothness was my attempt to accept them and make them easier to carry.

The more I looked at the image of those stones on my back, the more I knew they didn’t belong there. It’s not how I want to live my life. I don’t want to feel only the heaviness of the stones. I want to find a way to release them, to breathe, to live the best life possible.

I want to turn those stones into balloons!

Get These Stones Off Me Now!

I suddenly felt a sense of urgency to take my focus away from the grey heavy stones. I needed to replace them and I had been given the key. “Turn the stones on your back into balloons.”

As my mind turned to the image of balloons, I saw color. Red, white, pink, yellow, blue. As I focused further on the balloons, the colors of the rainbow appeared. The colors of hope for a brighter future.

As I thought about removing the stones from my back and replacing them with these balloons, I began to feel lighter, happier and I had a sense of freedom.

Balloons allowed me to fly, despite my disease. A sense of peace replaced a sense of burden.

I realized as I focused on the balloons in my mind, I was having a physical response. I was smiling from ear to ear. I was literally feeling relief.

Balloons Versus Stones

Let’s face it, adding stones happens naturally. It’s hard not to feel burdened by chronic illness and rare disease. They control so much of our lives, day after day.

Replacing those stones that have made a nice home for themselves on our backs requires commitment and determination. It’s so worth it, though.

So what do the balloons represent? It’s likely different for all of us, but here are some of the things on my balloon list:

• A mindset to focus on “what is,” not  “what if”

• Regular drives in the country

• Shopping trips in my new wheelchair

• Cafe lunch dates with my husband

• Morning or afternoon visits from friends

• A new home fully appropriate for my disabilities

• A local holiday for a few nights

My balloon list is colorful and allows me to fly. In my mind, I have rolled those stones away so there is no way the balloons can burst.

Our burdens are real. Our diseases can be cruel. There is no denying it. The more we allow our thoughts to stay focused on our diseases, the heavier and bigger the stones will become.

The image of replacing the weight of chronic illness with something light, like balloons, can be such a useful tool when you are feeling the sheer weight of your situation. It’s not to trivialize the seriousness of your health issue, it’s simply to help you cope as you live with it.

Ultimately as you turn the stones on your back into balloons, you will hopefully feel lighter, a more positive outlook may return, and an inner joy you felt incapable of feeling again may begin to flicker.

It’s Rare Disease Day on February 28. Let’s use this day to not only raise awareness, but also to encourage each other to turn our stones into balloons.