Health & Parenting, Home & Happiness

October 5, 2022

Anxiety Multiplying: Remembering My Pre-Trikafta Life


Anxiety - It’s the word that makes my skin crawl just thinking about it. You know, the one that makes you feel sweaty and gross when you’re in awkward social situations, or the one where you drink an excessive amount of water during phone calls or feel cold and clammy and freeze up in high traffic. Or is it just me? I learned a few years ago that being deathly afraid of basically everything like Chuckie in Rugrats actually has a name - they call it anxiety. I always thought anxiety meant having panic attacks, but it turns out the two aren’t mutually exclusive. 

For a while, I was good, laser-focused on the present and future in a way that was exciting and positive, but then little bits of my anxiety started creeping in. It started with a question about whether I’m living life the way I want to with my borrowed Trikafta time - and I thought - well, yes! I am mostly satisfied and content but I find that too often I am comparing myself to others, and it feels like the walls of time are closing in. I think this is another mid-life crisis but I’ve already had at least two of those in cf years. I’m overthinking everything. The cold I have that has settled into my lungs isn't helping.

I want a do-over. I’m just now learning who I am without cf - well, technically I still very much have cf but who is Sara when she’s not actively dying? What does she enjoy doing? Without my sole focus based on being a mom, I feel mostly lost and I have to be accomplishing something or I feel like I'm wasting my time and everyone else’s who didn’t get to have it - survivor’s guilt, again... I don’t know how to relax or clear my brain from the constant streams of fragmented thoughts that I struggle to piece together. What was I doing? What is my brain trying to say? I keep being marketed for ADHD, but the symptoms seem like adequate side effects of life and trauma. 

Let me be clear that these heavy thoughts aren’t always on my mind. I enjoy life's little pleasures like cuddling in comfortable blankets, enjoying the silence, driving with the windows down, sipping hot chocolate, going for a walk, or listening to the sounds of nature. There's so much in the world to explore and uncover. I’ve never considered myself a pessimist as much as a realist. It’s on the surface and I know it’s there, but I’m not drowning in it. Balance, they say! So my thoughts ebb and flow as they please.

As I lay here, I feel the nostalgia of sleeping in a hospital bed, it’s a familiarity that haunts me. I am fully encompassed in the memories of growing up at a nurse’s station, lucky, to be in such good company of the staff that became my family in a strangely cold and sterile environment. That's my comfort. Good company with a little bit of chaos. Yet tonight, I don’t feel good company. I feel a cloud. It’s a little one, slowly creeping in with eerie physical symptoms of my past “Pre-Trikafta” life. The anxiety fuels it. My mind can’t help but feel anxious about the signals my body is sending me. It’s NOTHING like my past, yet familiar all the same. I’m observant of my thoughts and feelings but careful not to conjure up any negative thoughts that feel too close, I don’t let them settle for fear that they’ll rule me and I’ll lose control, turning my passing cloud into a full-on storm. I breathe it in and let it go. I feel a bit better.

My breaths aren’t currently clear, but a little more rapid and shallow. I feel my lungs working just a little bit harder to maintain a familiar stride. My heart trying to keep up the pace and pump blood, my arms and legs a little restless so the shallow breaths don’t become too shallow as I drift off to sleep. I want to maintain openness, and sleep gives the body rest, but right now I think I would feel more comfortable if they stay awake, just a little longer. So here I am, spewing out my thoughts like I’m trying to organize a junk drawer.

Thinking of the passing of time, it's odd to think we put so much stake in trying to live perfect lives. We all live to die eventually and 100 years from now it’s unclear if our presence will even be remembered. Yet the day-to-day things like a messy house, unpaid bills, or a messy car shame us and suck up too much of our time and energy. Will it ever really matter in the long run? I don't think so, but I’d like to think the best parts of us will still make an impact.

I wonder, and I think about my friends - Bianca, Tahnee, Monica, Angela, Angelica, and so many more who’ve left a profound impact on me and how I wish to live the rest of my life in their honor. Sometimes I don’t know what it’s all for, but it feels like there’s something beyond us. I’m clinging to faith and hope that there’s more to the suffering than just suffering. I’m doing my best to find clarity through the noise, and dang it, life is noisy - but if I’ve learned absolutely anything, it’s to try to follow the music. So here I am, listening...


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