Strengthening Our Wings

Knowing when to accept help and when not to is a regular challenge for those of us with progressive diseases.

“Do you want me to push you down the hall to the kitchen?” my personal care attendant, a family member, or a friend might ask. This is well-meaning, as it takes much effort to get myself down the hall in my manual wheelchair, and it’s a frustratingly slow process.

I feel guilty when I don’t accept help. After all, wouldn’t I offer to help if the situation were reversed? Why do I willingly choose to wear myself out and to take an awkwardly long time to get around my house?

I don’t enjoy struggling for the sake of struggling. Certain activities involve struggle, such as completing a marathon or making amends over an old disagreement. Without struggle, we cease to live. A butterfly taught me that.

***

When I think of a “standard” butterfly, the monarch butterfly comes to mind, with its orange and black get-up. It is especially popular in southern Louisiana at this time of year, because many migrate here in autumn, when the overwhelming humidity is tapered by cool fall winds. 

Also at this time of year, caterpillars climb to an area that is safe from the weather and encase themselves in a chrysalis. Their transformation begins. There, in the chrysalis, their struggle also begins.

The lesson about a butterfly breaking free from its chrysalis is widely known, commonly attributed to a 2013 blog post by Sonaira D’Avila about overcoming addiction. In that telling, a butterfly’s struggle to emerge from the cocoon is slow, awkward, and seemingly frustrating. 

But if someone happens upon a butterfly having trouble exiting a chrysalis, and they help it by cutting a hole for escape, the newly released prisoner would be unable to fly due to its weak wings. A butterfly could die if someone helps it too much.

The butterfly’s struggle is how it gains strength.

A hard lesson from this story is recognizing the difference between struggling to death and struggling to live.

I need to remember that refusing help because of hardheadedness is stupid. But if I can grow because of the struggle, either by strengthening or maintaining my capabilities, then that frustration is worthwhile.

Being humble enough to ask for help, yet brave enough to recognize when I can do something on my own, albeit slowly and awkwardly, is a sign of maturity. I haven’t mastered it yet, but I’m working on it.

Everyone who is diagnosed with Friedreich’s ataxia knows that daily activities can be exhausting. So, reader, if you offer to help us and we refuse, know that you are still valued. And thank you for looking out for us.

Be patient — we are strengthening our wings.

***

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.