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. Well, this has quite literally taken over my life, ran me over with a semi truck, drug me through sub conscious vivid nightmare hell and plopped me back down in the middle of a massive cornfield they call “Iowa”. I always thought anxiety meant having panic attacks, but it turns out the two aren’t mutually exclusive.
A lot of things still bring me anxiety and my memories from past nightmares still feel concrete and real from time to time, so whenever the news comes on I can’t stand watching it. I’m sensitive to negative news and bad stories and now when I start to see something I want to avoid, my heart will quite literally skip a few beats trying to escape it - the same happens with any form of confrontation.
There’s still a sense of existential dread that actually for a while went away. 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 day to day but realizing I haven’t had a bunch of high achievements like most people makes me feel less satisfied and then the worry sets in. Worry that even though I’m happy staying in my lane and figuring things out that I’m not doing it fast enough and realizing how quickly time is passing but I’m just not making the amount of progress I originally planned or hoped for. I’m not living any of the experiences I thought I could never live without, and now I’m not even sure I want some of them. Suddenly it feels like the walls of time are closing in and I have to make a decision, but my fate is already pre-decided. 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.
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? Oh yeah, I’m also a mom - so there’s that little fact. And I am completely co-dependent on being a mom. Without it, I feel mostly lost and like I have to be accomplishing something or I’m simply wasting my time and everyone else’s who didn’t get to have it - survivor’s guilt, again.. I feel so much empathy towards people it’s an unhealthy amount. I literally have thoughts like “why are you doing crafts when there are so many people starving and needing help”. I don’t know how to relax anymore. I keep being marketed for ADHD and the symptoms apply, but they also kind of just seem like adequate side effects of life and trauma.
Let me be clear that these heavy thoughts aren’t always on my mind. Much of the time I really am sunshine and rainbows in life’s little pleasures like cuddling in comfortable blankets, having rare moments of silence, driving with the windows down, sipping hot chocolate, going for a walk or listening to the sounds of nature. It’s amazing, there’s so much to explore and uncover and my childlike imagination is in full force making little visits whenever I need them most. 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. I see the sun and I swim towards it, (even though I don’t actually know how to swim). I’m grateful for some healthy doses of realism since they help me see the light. Balance they say! So my thoughts ebb and flow as they please.
When I think about death - I’m not so afraid of death. I feel like I know enough about what happens to our brain and bodily functions when we go. C’est la vie. I’ve always been way more scared to let people down or miss out on their lives and I kind of believe in heaven even if it’s not the exact one people quote from the Bible. Thinking about people existing one day full of life and energy to vanished like an ever destructive magic trick is kind of horrifying and it seems cruel. I’d like to believe there’s a heaven with light and love but part of me is terrified to leave this all behind if there’s isn’t. And why the heck do life and death have to be so gruesome to so many good people anyway. I guess it’s to give us lessons and make our time on this Earth more meaningful and important - but I still think grief sucks.
On the flip side it’s just as scary to be alive. To think I birthed an actual human in today’s world consistently blows my mind. People are becoming so divisive over politics meanwhile space travel and technology are soaring to new heights met with uncertainty and potentially dangerous implications for all of mankind, but hey, who cares about that? We don’t need to worry about running out of natural resources, money, and clean water - what really matters is that we have TVs big enough to watch the news and grown men throwing a ball around. Hey, I do like sports - it’s a good escape really, I just wonder if we could be doing so much more than that. Everything fun feels shallow when most of your friends are dead and you have a kid demanding Lucky Charms and peanut butter and jelly sandwiches for every meal without even the audacity to say thank you. Sure, it’s messed up but still, day in and day out you have to prove that you can keep doing this and that you’re getting better at it and deserve to be here - or at least it feels that way sometimes. Life feels like a competition that I’m somehow simultaneously winning and losing, because I’m here and my friends aren’t, and I haven’t a clue why I’m chosen to live longer than they were when I feel like I’ve done so many things wrong and to me, even though I know it’s not possible, they were perfect.
I was trying to sleep tonight and I can’t. I’ve had a cold for a few weeks and I thought it was just stuck in my sinuses but today I felt it in my lungs too. As I’m trying to sleep there is a slight wheeze and an uncomfortable heaviness in my chest. My muscles feel tired and I’m mentally both exhausted and stimulated, mildly hungry for air, mildly hungry for filling the time with something that feels important in case even a little bit is slipping away. I feel the nostalgia of sleeping in a hospital bed, uncomfortable because it’s not home, it’s not my bed - but comfortable because if I start to slip away alarms will sound and there can be something done about it. It’s a familiarity that haunts me, though it hasn’t been by in quite some time. It exists here tonight, 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 cold and sterile environment, housekeeping carts rolling through the hallways and the Dora The Explorer theme song on repeat in a room down the hall. Children laughing in their wagons and playing despite tubes in their noses and gowns barely hanging, holding on by a tiny thread cradling their little bodies. One sweet boy that mischeviously sets off the fire alarm and another kid whom only takes their enzymes in pure ketchup. That’s my comfort.
Good company with a little bit of chaos. And 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. It seems like baby steps a light year away but with the flick of a magic wand everything can change and I know that about this disease. 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.
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 of 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. The present shapes the future and I want to be able to control the controllables, and the uncontrollables. I want to have my cake and eat it too, and with Trikafta - I have just that, but now that my ship is a little unsettled I’m worried that I’m one sharp pebble away from a slow leak in my boat. I’m afraid I just can’t let that happen. Floating on the water feels too nice for it to be taken away.
So here I am, spewing out my thoughts like I’m trying to organize a junk drawer. I’m hoping it’ll bring me comfort and help me see more clearly, just a little, so I can feel that little bit of pride and glimmers of happiness that make me feel like I’m headed in the right direction. I feel a great sense of purpose that hadn’t settled before and an immense determination to achieve all of everything I’m setting out to do, no matter how silly or ridiculous, with whatever time I have. And I appreciate it all and soak it up, hoping to give it back to anyone I can.
It’s so odd to think we put so much stake in living our lives as great people, learning all of life’s lessons and righting our wrongs, hoping to teach our children whatever it is we can that we wished we’d only known sooner. We all live to die eventually and 100 years from now it’s unclear if our presences will still even be known. Yet the day to day things like a messy house, unpaid bills, or the fast food bags that sit in our car and shame us into thinking we’re not doing enough or living life “correctly” sucks up so much of our experience on this Earth and judgment about ourselves. Will it ever really matter in the long run? I don’t know but I’d like to think the best things about us will make an impact, not our worst ones.
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 onto faith and hope that there’s more to the suffering than just suffering. I’m hoping once the suffering is gone it all makes sense, that this isn’t some weird simulation where we’re like puppets on strings in the fabric of time and space carefully and callously picking our final destination through every decision, even if it’s already pre-fabricated and we just think we’re the ones in control. I’m trying so hard to make the right decisions and begging God to help give me clarity and guide me through all of 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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