La vita è pazza, no?

My membrane has been quite permeable lately. So much so that I just cried when asking Maria at the American Airlines desk for a tag to check my TravelScoot at the gate. Then I cried in the airport bathroom stall. And then one more time in front of my boys, which I rarely do. I’m not sure what’s going on with me. Actually, that’s not true. I do know what’s going on with me…I guess I’m just in awe of the fact that no matter how often I have to confront the reality of my disease, it still hurts so much. Even 15 years later.

We are at the airport for the first time since December 2019. I feel incredibly grateful and lucky to be able to take an island beach vacation with my family.  I also feel sad, scared and deflated. Sad because no matter where I go, the losses come too. Scared because I don’t know how my body will handle being out of her comfort zone for the first time in a while. And deflated because despite the number of times I’ve been stuck behind with my scooter in TSA, forced to wait (always in the way of hurried travelers) while someone repeatedly calls out for a “female assist” to pat me down and send me through- it’s no less uncomfortable.

The truth is, it’s not just all of that. Underlying and exacerbating the sadness is the fact that we aren’t boarding a plane bound for Puglia, Italy. (I’m just going to share authentically here and let go of judgement.) 

Italy holds a special place in my heart. One month after my now husband and I started dating, we whisked ourselves away to a romantic weekend in Florence. (One of the many perks of going to medical school in Israel.) That weekend was the first of a handful of trips to Italy we had the extreme good fortune of taking. We were young, carefree and in love. It was pure magic. Every time.

In the fall of 2019, I figured our kids would be old enough to take our first meaningful international trip that coming summer. Two destinations were at the top of my list: Japan (forest bathing + onsen soaking + the combination of ultra modern and traditional) and the southern coast of Italy, as I had never been to that region. We settled on Puglia, right at the heel of the boot, an area comprised of tiny seaside provinces. I found a local couple to help plan our itinerary: olive oil tasting at an (inaccessible) underground olive oil mill, kayaking (non-adaptive) through sea caves, jumping off rocks into the Adriatic Sea in Polignano a Mare, learning to make orecchiette in a grandmother’s kitchen. These were things I felt confident I could still do, but barely. Time was of the essence.I couldn’t wait to tap back into the magic: the food, the language, the beauty, the style, the exploring of new places.

Then the pandemic hit.  As did the reality that Italy wasn’t going to happen. Not that summer at least. Obviously, in the grand scheme of the tragedies unfolding around us, it was nothing. Ridiculously insignificant. Superficial. But in the context of my slowly weakening body and in my heart, it was devastating. So much so that I never really let myself process it. Until now.

What once may have been an inconvenience and disappointment, now feels like an irreversible loss. What I could do three, two, even one year ago, I can no longer. Stairs are more daunting, maintaining my balance upright is trickier and in these last few weeks, I have experienced frequent and fearsome fasciculations (last ditch involuntary muscle contractions that indicate imminent muscle death) in areas that I always thought would be spared. The control I once had over my physical body continues to slip away, no matter how tightly I try to hold on. It takes an inordinate amount of strength to let it go. 

Here’s what I will hold onto this week: the compassion of strangers- like the seat upgrade given to us by Maria before boarding and the paper towel brought to me from across the way (without me asking) by a woman in the airport bathroom. I will hold on to the loving hug given to me by my older son when he saw my watery eyes.

I will hold on most tightly to the experiential knowledge that this is my process: eventually let the sadness, anger and fear come up and out to make room for acceptance, once in acceptance, invest in adapting; after adapting, get back in touch with gratitude and joy, then stay there until the next inevitable loss, at which point the cycle will repeat itself. Adapt and evolve. It’s an exhausting process, but seems to be the most worthwhile.

During our courtship, Noah left a bouquet of flowers at my apartment doorstep with a note that read, “La vita è pazza, no?” Twenty one years later and it still holds true. Life. It is indeed crazy.