Never Give Up — Except on Being a Caterpillar

Living with sarcoidosis can transform our messaging, mentality, and mindset

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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“‘How does one become a butterfly?’ she asked pensively.

“‘You must want to fly so much that you are willing to give up being a caterpillar.'”

— Trina Paulus, “Hope for the Flowers”

Winners never quit, and quitters never win. When the going gets tough, … you know the rest.

We’ve all heard tropes like these and have likely taken them to heart. The first 45 record I ever bought was “Never Surrender” by Corey Hart (showing my age now). To this day, I still have a bracelet engraved with the words “NEVER GIVE UP.”

In many cases, that’s a good lesson. It helps us develop strength, perseverance, discipline, and skill. It encourages us to overcome obstacles and grants us the reward of satisfaction when we’ve accomplished something difficult. But that doesn’t mean it’s universally applicable.

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There are some occasions when it’s actually in our best interest to quit. If we have a bad habit or vice, we may want to stop. If we’re in a hostile work environment or abusive relationship, it is imperative that we leave. This isn’t a novel idea; I shared my insights in a blog post titled “It’s OK to Quit” over 10 years ago.

But for people living with sarcoidosis or other chronic illnesses, there may be another inescapable reason, one that is often much harder to accept: The symptoms and progression of our disease can make some obstacles insurmountable.

We’re not quitting. Our bodies are quitting on us.

We must acknowledge that with diagnosis (or more accurately, with the disease that hits our bodies before the diagnosis hits our charts) comes substantial loss — a loss that we must allow ourselves to grieve. Along with the physical changes, we may lose friends, family, and, worst of all, our sense of self. It can make us feel like caterpillars, slow and stuck, wishing we could fly the way others seem to do so easily.

And it’s not just a one-time loss, either. I had to leave a career I loved because it took me weeks to recover from a weekend event. I spent months trying to find a less physical job but had to concede that even that wasn’t possible with a disease as unpredictable as sarcoidosis. I had to change the types of vacations I took and even the ways I volunteered. Adaptations like these are how we molt into our chrysalises — the hard exterior that protects us as our bodies change.

I can think of no greater example of this than actress Selma Blair. She was diagnosed with multiple sclerosis (MS) in 2018 and has been open about how the disease affects her. Last month, I celebrated her for bringing disability representation to the Emmy Awards and “Dancing With the Stars.” In the weeks since, I have watched in awe of her performance and in admiration of her partner, Sasha Farber, as he listened to her, learned from her, choreographed, and modified each step to her specific needs and abilities.

Earlier this week, Blair withdrew from the competition after medical tests signaled impending damage if she continued. “I’ve pushed as far as I could,” she said, acknowledging the “special considerations” that come with chronic illness. There was not a dry eye in the studio as she and Farber took the floor for the last time, earning a perfect score.

In a pre-show interview, Blair dedicated her final performance to those who have faced similar obstacles, saying, “This is a dance for everyone that has tried and hoped that they could do more, but also, the power in realizing when it’s time to walk away. So I am so, so grateful to be able to do one last gentle dance.”

I felt those words deep in my soul. I have tried and hoped that I could do more. So many of us living with chronic illnesses have.

Ever since Blair first spoke about her diagnosis, our community has admired her and been inspired by her — even more so over the past few weeks. It takes so much strength to show that vulnerability on the world’s stage. But that can add even more pressure to perform, to keep going, to inspire.

While Blair was grateful for her last dance, I am grateful that she listened to her body, recognized that power, and walked (or waltzed) away. That is the example most of us need: to recognize and respect our limits, and know that doing so isn’t weakness or surrender.

Debilitating chronic illnesses like MS and sarcoidosis may cause us to lose strength, energy, and dexterity. We’ve got to be selective about how — and with whom — we spend our limited time. Withdrawing from the activities that cause us more pain is not quitting. It is giving up being a caterpillar. We may not be what we once imagined, but Blair’s last dance exemplifies the beautiful “buttahflies” we can still become.

Note: Sarcoidosis 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 other 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.


wendy a schleyer avatar

wendy a schleyer

Kerry thank you for all you have done for all of us. This disease is like the tic I just got bit with. Its not seen because its so small but sneaks up on you and no one else can see the tic or this disease. Sick of being the person with this as Im sick of being bit by tics. I guess Im sick of having and losing a good doctor. Sick of explaining it and only 10 percent care. Juset like Albert Einstein said 10 percent care and 90 Percent done. I wish we all could band together and go to the news to show how horrible this disease is. Why do we have to fight so hard to get care and why did I have a lawyer tell me no one believes me for my social security case. so, devastating now My brain bleed damaged my brain what more will I have to take.

🦋 Kerry Wong avatar

🦋 Kerry Wong

Thank you, Wendy. if there's one thing we all understand, it's being sick and tired of being sick and tired. I'm sorry you're still going through so much, and the challenges with SS can make it all feel bigger. I know they tend to deny a lot on first application, but you can appeal: I was denied at first; the appeal process took about 2 years, but eventually they saw all the medical documentation and I was approved. I hope you can get a supportive and knowledgable lawyer/advocate to help you through that process. Good luck!

Elizabeth Spiro avatar

Elizabeth Spiro

Well, Kerry, you've done it again. I just read your caterpillar article and you were speaking to me, for me, from me. I know there's a butterfly inside me somewhere. But, I'm accepting the fact that I'm too fragile, in my body, to make it as a butterfly. I need to be a caterpillar with crusty armor, some protection from the world and at times from my own attacks of guilt, worry, sorrow, sadness, and illnesses new and old.

I loved ballroom dancing. I felt for the first time I was truly a butterfly, gracefully moving with a lovely partner to inspiring music. I wasn't of course, I was a 50-year-old caterpillar dreaming of becoming a butterfly. Well, that joy came to a screeching halt as it did in your writing. I couldn't move safely, my feet and body hurt too much and were getting worse with the additional stress of dancing. I was broken for a bit. still, a bit even now as I remember the joy and freedom.

I've learned through this last year especially, with lovely guidance from my good physicians and my online support friends, to accept my body as it is and as it hurts and the diseases that are attacking it. Acceptance is my key to living. I now, usually, accept and suck in as deep a breath as possible, then move forward. One tiny step at a time. Using a lovely cane. At times, using my hot pink with zebra stripes walker to say ok, world. Here I am. As I am. And I'm doing just fine for what I am.

I've modified my life to wearing funky, sparkly walking shoes...slip-ons only as I can't tie a bow! But they sparkle and make a statement. As do I. I love this newfound freedom and life. Thank you and your compadres for giving such good insights into our own inner needs. And, helping us become better caterpillars.

🦋 Kerry Wong avatar

🦋 Kerry Wong

Elizabeth, thank you so much for sharing your story. I'm sitting here nodding my head vigorously as you mention needing "protection from the world and at times from my own attacks of guilt, worry, sorrow, sadness, and illnesses new and old" - I think we all need protection from ourselves that way!
And that moved on to a beaming smile as I read about your pink zebra-striped walker (I'd have gone purple, but otherwise awesome), sparkly shoes, and your "Here I am. As I am. And I'm doing just fine for what I am" attitude. I feel like we're kindred spirits - I've got the sparkly slip-on shoes and hippie-decorated mobility aids, too!


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