If I had to do it again …

I was having a conversation with another Keto parent the other day that spurred an interesting question for me: if I had to re-live the most difficult parts of Nora’s epilepsy, what would I do differently? What have I learned that I would tell my past self if I could?

Float like a butterfly. Have you ever watched how a butterfly flies? They flap furiously, then glide for a short time, then flap again, then glide. They don’t try to keep an even pace. I think that when I was really in the weeds with my stress about Nora’s epilepsy, I felt like I had to “handle” it with grace, that I should be calm and in control. But then when I couldn’t handle it, I felt even worse because I knew I was failing.

In retrospect, I would allow myself more ups and down. I would find people that could listen or validate my fears and anxiety, to allow me to acknowledge my hard feelings so that the “down” phase could allow me to rest and vent. Then I would lean in harder on pursuing things that give me joy and space, so that I had an “up” phase, to pick me up so that I was ready to head back into battle against the anxiety and day-to-day grind.

So perhaps don’t focus on trying to be bulletproof and always on top of everything. The grind will eventually wear you down, no matter how strong you think you are. Instead focus on having strong means of renewal, so that you can keep diving back in. Think of what gives you joy and peace, and lean on those things more than ever so that you can be rested for the hard work. Flap and glide, flap and glide,…

Mediate and breathe. Meditation and breathing exercises don’t need to be fancy. All you have to do is take a moment to interrupt your rumination to give yourself a little break. I was describing this visualization to my therapist the other day: have you ever watched a vortex form at the drain of a bathtub? It starts weakly, then extends down from the surface down to the drain as it builds. But sometimes when the vortex is still just forming, a drop of water from the faucet will fall and interrupt the vortex formation, and it slowly has to start building again. I think of that vortex as my swirling, busy thoughts, and I visualize that drop of water splashing into the vortex, rippling out, and stopping it. I think if we regularly check in with our brains and interrupt these swirling thoughts throughout the day, we can give ourself a little break, and keep from exhausting ourselves. Visualize that drop of water sending a calm ripple across the water of your mind, leaving stillness in its wake.

Be vulnerable but resilient at the same time. This relates quite a bit to the “float like a butterfly” idea, but if I had to do it again, I would be better about telling myself things like: “I know I will get through this, that there is a light at the end of the tunnel, but today has been really hard, and I’m struggling.” It is possible to feel hopeful while simultaneously expressing grief, and it is possible to acknowledge your fears and frustrations while knowing that you eventually make it through. You can live in both places at the same time.

Epilepsy is really hard. Keep going; one foot in front of the other. Each hard day you make it through is one less on your path. Embrace your sources of joy, keep filling your tank, and keep diving back in.

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