Fake news
My left eye is twitching again.
There are these little spasms in my eyelid where both the top and bottom lid flutter with high intensity (the only part of my body that can move with high intensity ha). The spasms have been getting more frequent, although they only showed up several weeks ago. They tend to start in the evening which makes sense because that’s after my eyes have working for a long period of time.
When I went to visit the eye doctor earlier this week to check out my floater issue, I also mentioned the eye twitches, wondering if that was a symptom of lattice degeneration as well.
“Stress. The cause of this is stress”
Ahh. Hahaha. That makes sense. I’ve been under a lot of stress lately.
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It’s funny because this stress feels so unlike other forms of stress. This type of stress is different. It’s the type of stress where I don’t know what to do. Where for the first time, I have no control over it. All the other kinds of stress seem a bit resolvable right now — those instances where I thought I had no control? Ha! I definitely did have control over the situation and had at least one available course of action; I could do something about it. And I think a part of me knew that as well because the stress had never physically manifested itself in my body.
This is different.
For the first time, I actually can’t do anything about it. I can’t go into my DNA and fix the genetic mutation (at least not yet!). I can’t stop my genes from malfunctioning. This is out of my control.
And yet, it also is within my realm of control. That’s what I’m trying to remind myself and that’s what my friends, family, and community have reminded me as well.
I can stop the progression of the disease by drastically reducing the amount I exercise. While it might not feel drastic for others it feels like a drastic measure for me because exercise has always been a huge part of my life. I’m the one who started our family tradition of running the Turkey Trot every Thanksgiving morning - we are one of those families that people are scared to marry into. I’m the colleague who dragged her team to a Physique 57 barre class to celebrate a project win, the friend who dragged her crew to 305 Fitness for a birthday party, the athlete who treated herself to a ToneHouse workout class as a birthday present. I’m the person who plans her vacations around multi-day treks in faraway lands and uses running as a way to explore new cities. I’m someone whose life is centered around being very physically active.
Thankfully I still have the physical ability to walk. Right now the cardiologist’s guidance is to keep my heart rate under 100 beats per minute.
Have you ever measured your heart rate? Let me give you a sense of what 100 bpm actually looks like. If you have an analog clock with a second hand, a digital clock that counts seconds works as well, keep an eye on the second hand and its rhythm. Act as a human metronome and sound out the rhythm of the second hand out loud: “bum, bum, bum” — this gives you 60bpm. Now double the tempo and sound out the second and its halfway point: “bum-bum-bum-bum-bum-bum” — that’s 120bpm. It’s really not that fast.
Performing squats at a slow and steady pace - bodyweight squats mind you, not even weighted squats - gets my heart rate up to the high 90s. Going up the stairs can increase it to that range as well. A slow jog (which I’m not cleared for) can exceed 100. And these are measurements for someone who is in decent shape and already has a pretty low resting heart rate.
What makes this a mind fuck is that I could actually do all these physical activities — after all I still have the ability to do them. But I am the one choosing to adhere to these limitations so that I can have a normal and healthy lifespan and preserve “future May”. Because the more I use my heart, the faster the disease progresses. How messed up is that.
I know there are ways to get creative about these limits, and my friends have been wonderful in helping me ideate. What about walking the marathon instead of running it? What if I could do some type of Zen breathing while exercising so that I could keep my heart rate low enough to do a medium-intensity exercise?
In a way having limits is beneficial because it reduces the number of options from overwhelming to manageable. In some moments I find that reframe helpful, especially in terms of figuring out what I want from my career (life is too short to waste on doing something I hate); in other moments that reframe feels like it takes away the legitimacy of how I feel about losing the ability to exercise.
I’m trying to remind myself that it’s only been a week, exactly a week today, since I’ve found out about my diagnosis, so it’s okay that I’m a bit all over the place. Sometimes I worry that I’m too focused on living fully (have you read how often I bemoan not being able to move as actively as before?) and not worried enough about living long, because every action I take now impacts my future. I mean, obviously we know that our current actions affect our future state but it feels more real to me now that I’m facing the reality of mortality a bit earlier than normal. But then I have to remind myself that I can still live fully, it’ll just look different from how I imagined it before. My brain feels like a ping pong ball, bouncing between two extremes.
It’s great that living is possible but being alive isn’t enough — I want to continue to live. What does it look like to live fully in this new reality? Before I could work through struggles with the mentality of this is temporary, but ARVC is forever.* What does this means for the next year, five years, and beyond? How does this not only impact my long-term plans but also my daily actions?
It’s also hard not to wonder if that brief flutter I felt in my chest is an arrhythmia or just needing to burp. If that random twitch I felt is just my lunch trying to crawl its way up my esophagus or a mosquito taking a bite out of my boob. If that twinge in my chest is heartburn or something scarier.
Honestly I’m still in denial. I think right now in this moment I am processing so well because I am 99% in denial. I vacillate between outright denial (this is just an alternate reality) to sudden brief flashes of grief (seeing someone random running on the street) to sheer incredulity (what the fuck. How the hell did this happen).
There’s a huge part of me that think this is all a joke. That this is fake news. That I’m going to wake up next week and my doctor and I will laugh it off and I’ll be given the all clear to go for a run. Because there’s no way that I can never run again for the rest of my life…right?
*In an earlier entry I mentioned that there are some preliminary studies around gene therapy being a possible option for ARVC patients with the PKP2 genetic mutation. The first human study is supposed to begin in the second half of 2024 as a phase 1 clinical trial.