Finding Peace With My New Body Means Accepting Change

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by Nicole Kohr |

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Have you ever heard the phrase “I can’t slow down or I’ll stop?” I’ve always operated that way.

I’ve always been accustomed to pushing myself and “sticking it to the man.” This gave me energy. More importantly, I was afraid that if I slowed down and accepted my situation — that I was a sick girl on the decline — I’d fall into an emotional black hole I wouldn’t easily escape from.

In fact, my level of self-care fell so far by the wayside that pushing myself was the only mode I had left. As a result, I’d audition for every show I could find, even if I was past due for a health tuneup, which entailed a two-week hospital stay to receive IV antibiotics to treat my cystic fibrosis.

I’d convince myself to get on the school bus knowing I had a fever. Statements like, “It’s just a little hemoptysis,” and words like “wellness” were mutually exclusive. Still, I knew my body inside and out, and I knew what it could handle.

Then, things changed.

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Pre-transplant

In the months leading up to my double-lung transplant in June 2019, I had to learn how to do nothing. As a mover and a doer, this was difficult to master. Sitting on the couch while attached to high-flow oxygen felt unproductive.

Watching my family run back and forth while tending to everything, including my care, I felt I wasn’t earning my right to live in the house. After all, my worth is based on how hard I work, isn’t it?

But my thought process went a step further, from “I’m not helping” to “I’m hurting.”

On the flip side, when I tried to help around the house, I would make things worse by fainting or falling ill. In the end, resting became preventive action.

Post-transplant

After my transplant, when my oxygen levels and other indicators were steadily rising and my symptoms were dissipating, the reaction was mixed. Close friends and family still approached me with caution, while acquaintances assumed I was cured.

I was torn. Sure, the numbers in my clinical notes indicated I was doing well, but I didn’t have a relationship with my new lungs. I’d think, “Maybe I don’t know my body at all.” Or, “I didn’t realize I was that sick. What if I’m wrong again down the road?”

Paranoia set in as I questioned both my confidence and my lifestyle. My brain and body were no longer connected. It was like I had “Freaky Friday’d” into a body with different allergies.

Last year

Thankfully, the paranoia settled down after a couple months and allowed me some time to enjoy a regular life. I’d go outside and take a slow, steady walk around the block. I’d work up the courage to fold laundry and help with other small tasks. I’d take advantage of energy bursts and clean the bathroom, and then do the “nothing” I had trained myself to tolerate.

Slow and cautious was my new way of life. Why would I risk pushing myself again when my independence and stability were still fragile? Being encouraged by simply taking a breath, and being fearful of the unknown, made me happy just to sit on the couch and do nothing. Hidden enemies like germy soil weren’t about to take me down.

Now

Then, things changed again.

My husband bought two new bikes, and I was expected to keep up. We’d park farther away from the front door of a restaurant. The hefty laundry basket needed to be brought upstairs, and the Post-it note on top had my name on it. Grocery shopping appeared on my to-do list, without warning.

Suddenly, I faced new questions: Had I become too settled into my do-nothing lifestyle? Is there a balance between pushing myself and doing nothing? And if there is, why can’t I find it?

I’m still not convinced that I truly know my body. In a process of elimination, I decide each day whether I should rest or do things like clean the roof of my house. I’m still somewhat cautious, but I’ve also had to rediscover my own sense of  bravery. I’m trying to be flexible, but I also wonder if things will change yet again.

I am Changing,” from the Broadway musical “Dreamgirls,” is such a beautiful song. In it, the musical’s lead character, Effie White, laments her past and contemplates her desire to change for the better. Like Effie, I find it difficult to move forward without relying on my past or depending solely on my gut instincts. Changing oneself isn’t always a bad thing, but accepting change can be challenging.

I was ill for a very long time. Then, I received my donor lungs and I no longer feel like a burden to my family. And as it turns out, I ended up answering my own question.

What happens if I slow down or stop?

I change.

Please come back every Thursday to read more of my story, and share your thoughts in the comments below! 

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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Mary E Shreck avatar

Mary E Shreck

Even though we've spent time with you, there is a lot I didn't realize about you. You always make us laugh and are so proud of you. We are the blessed since you met and then married our grandson. Keep up your amazing feats, you definitely are Supergirl and we love you!

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