Giving Myself Permission to Forget

I was recently reminded of what my life used to be like before Trikafta® — and I immediately felt guilty for forgetting. But maybe it’s OK to let go of the past and embrace a future of hope.

May 2, 2024 | 5 min read
Morgan Barrett
Morgan smiling with her twin toddler sons

I’m forgetting.

I’m forgetting what it was like to be tethered to treatments every day. Forgetting the way I got used to my vest making my torso itch. I’m losing the muscle memory of mindlessly making nebs, cleaning them, checking them for dishwasher debris.

I’m forgetting the fear of losing my siblings. Forgetting the way I thought I could help control their fate if I could only control mine. I’m losing the memory of our worst days, the way fear turned to anxiety that made every muscle in my body taut as a tightrope.

I’m forgetting the numbers — the dips in PFTs that gave me a dip in the pit of my belly, the dosages I knew by heart, the days I counted down till I could go home from the hospital.

It’s all fading. Some feelings faded quickly, others I can still recall if I try. Why do I try? I guess because even though it was hell at times, it was still my life.

I realized recently, when I was put on a round of antibiotics for the first time in a few years, that I had forgotten so much of the nuance that came with having cystic fibrosis before modulators. I had forgotten the way taking bacteria-busting pills twice a day kills off the bacteria in my lungs — and the good bacteria, too. I had forgotten about the gut imbalance, the thrush in my mouth, the other issues that we don’t like to talk about.

I take for granted now all those things that were never a given before Trikafta®. I take for granted that I no longer have a cough. Most days, I don’t think about how I used to cough constantly. I don’t think about how nice it is not to have random strangers looking at me like I’m a walking germ or offering me a cough drop (as though that would have done anything to help a CF cough). 

I take it for granted that I’ll be able to make travel plans and keep them. I don’t think about how I used to have to lug 50 pounds of respiratory equipment with me everywhere I went. Or how TSA used to inspect my vest compressor in airport security to make sure it wasn’t a bomb. 

I take it for granted that I’ll live long enough to see my kids grow up. That I’ll get to enjoy traveling with my husband when we retire. That I won’t die while undergoing a lung transplant.

Sometimes I feel like … How could I? How could I possibly forget? Don’t I need to hold onto who I was before? Don’t I owe someone my remembering? And if so, who?

And then I think, maybe forgetting is my right. Maybe the forgetting should be celebrated as my own happy way of leaving behind all the hard things I endured. 

I think I have a brand of survivor’s guilt. Feeling guilty that I am living a basically normal, healthy life now, and not everyone has been given that opportunity. I think of all the people who died because of cystic fibrosis. Who missed the Trikafta ‘finish line’ by decades, as well as those who missed it by mere moments. I think of the people across the world who don’t have access to therapy like Trikafta. I think of the people who, because of their particular gene mutations, do not benefit from Trikafta. I think of the people who are actively dying because they don’t have what they need to live.

Something I read one time comes to mind. It was along the lines of, if we don’t enjoy the good things that have come our way, we’re missing the point. People didn’t fight for a therapy like Trikafta so that I could take it and then feel bad that it works. The hope behind the effort was that people like me could and would leave the pain and suffering of cystic fibrosis behind and live our lives.

Sometimes I have to remind myself that it’s ok to be happy, to take the things for granted that I used to yearn for, to enjoy my health. It doesn’t mean I’m betraying a past version of me — I’m honoring her.

She would be so happy to know that her future isn’t full of pain, fear, loss. She would be crying and laughing to learn that her siblings are thriving. She would be full of wonder knowing that she is a mom to freaking twins!

And, I have to remind myself that my guilt serves no one. I can enjoy this new version of my life and think about, listen to, and advocate alongside those who are still fighting for their ‘miracle’ therapy. I can be happy and sad at the same time. But I don’t need to cling to painful memories that are begging to be let go.

Until it’s done.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Morgan lives with her husband, Kory, and twin toddlers, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside, reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S. Beets, Bears, Battlestar Galactica.

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