A few weeks ago, I officially ran out of room. After having spent months shoving down each new loss, terrifying realization and micro trauma as deep as possible, I dead ended. When every nook and cranny had been stuffed, I moved on to distraction mode, desperate to avoid dealing with what was festering underneath. My defenses were on overdrive.

For a while, almost six months in fact, this was an effective strategy. But my delicately crafted system inevitably started to malfunction. The compartments burst open and the contents spilled everywhere. It was messy and uncomfortable and I cried. A lot. For days. I cried to my family, I cried to my friends, I cried to my husband, I cried to my therapist. I even cried in front of my boys.

I am twelve long years into this disease and I still find myself back at the beginning. Is this really happening to me? Is this actually my life? Is this my body that’s continuing to decay against my will? I sometimes wonder how I can remain my full true self when I’m losing so much of me.

These past months of emotional hibernation spanned a spring break in Zion National Park, a middle school graduation, a summer vacation in Hawaii, a sleep away camp drop off up north and other fun, joy-filled, meaningful experiences with my family. For once, I didn’t want them to be contaminated by this disease. I frankly didn’t want to feel sad. I was desperate for experiences that were pure.

On our first trip, my husband took the boys through TSA.  I’m usually only a couple of minutes behind, following the protocol with my scooter. But this time, there was no “female assist” available to take me through. Minutes passed. I was in the way of impatient travelers maneuvering around me. I asked repeatedly if someone was coming. In her tired, monotonic voice, she called out again,  “female assist.” I asked why there weren’t more agents. I asked what would happen if I were late for a flight.  I wondered aloud if she understood how difficult it was already to have a disability, let alone endure moments such as these. I looked over at my boys and my husband on the other side.  Just minutes prior I had felt so excited and happy and even so proud of myself for using my scooter. And now this. Once I finally made it through, I quickly found an open pocket and shoved that pain in it.

On the way back from that trip, we were one of the first to disembark. Luckily, my scooter was waiting for me when we stepped off the plane. My husband quickly realized he had left something behind. I told him we would go ahead and wait for him at the gate as we were already starting to cause a traffic jam. My boys grabbed their suitcases and as soon as I started scooting up, my wheel got jammed in the gutter on the side of the jet bridge. I kept revving the throttle, but it wouldn’t budge. My husband wasn’t there to dislodge me. The entire airplane full of passengers was lined up behind me. I felt my face turn red and hot. I tried to calmly tell my boys what to do, but they were flustered and embarrassed by the scene I was causing. I smiled and joked as I apologized to everyone behind me for the inconvenience. After an agonizing few minutes, a fellow passenger assisted me. I wanted to disappear. Instead, I decided to try to disappear the experience.

Living with GNE Myopathy feels like living on a former battlefield. I never know when or where I might step on a landmine.

On our next trip, waiting to get through TSA was just as frustrating. But this time, I was so fed up that I decided to just try to walk through the scanner myself. They could wipe down the scooter separately. It had been a few years since I had gone through this way. Once in the scanner, they asked me to put my arms up in the position depicted in the picture. It was in that very moment- in the midst of the hustle and bustle of the airport and the excitement of going on a vacation- that I discovered I no longer had the upper body strength to raise my arms above my head in that way. I had been ambushed.  No. This can’t be happening. Is this really happening? Don’t get upset. Don’t cry. Keep moving.  I quickly dug a hole and shoved it in.

Traumatic moments such as these are happening with increasing frequency. Getting stranded on the sand at the beach during our Hawaiian vacation (despite having my trekking poles) and frantically assessing which stranger would be suitable to ask for help. Discovering that I can no longer stand up unassisted in a shower unless there’s a faucet to hold on to positioned in just the same place as mine at home. Wanting to capture spontaneous moments at my son’s graduation only to suddenly realize I’ve lost my ability to stand up and balance with my cane in one hand and a phone camera in the other. Trying to place a pillow between my legs as I always do before sleep only to find I’m struggling to lift one leg up. I now have to do it manually. Looking in the mirror and seeing new outlines of bones jutting out from my body that were once hidden under healthy muscle tissue. The land mines are everywhere now. It is so hard not to panic.

These moments arrest me.  They threaten to blow up the foundation of reassurance I’ve worked so diligently to lay down for myself; the one built on the hope that if a treatment came along tomorrow to stop progression, I’d still be okay. I could still make it work.

I am quickly approaching a level of disability that no longer feels okay.  I truly never believed it would get this bad. I never thought I would have to prepare for this. I don’t feel prepared for this. I don’t want to have to prepare for this. I just want it to stop. It’s not stopping.