A snapshot moment when everything changes forever
Life had happened one day at a time for years. The beautiful bits, like the first moment we met each of our kids after the Great Escape, and they were laid upon my belly; our arms embracing them like loving parentheses.
The hard bits, like the moment my dad took his last breath - and then he started breathing again and scared me. He did die shortly thereafter. It was powerful to observe the last bit of life slipping through the fingers of a man who did not want to transition, but had no more functional life equipment to sustain his goal.
There were so many everydays that felt like they’d always be that way, until the moments we noticed how big the kids were getting, and the grey muzzles of our pups. You do the things, sleep and wake, keep on living, and those moments add up to your life-to-date. Another day seemed like an absolute guarantee, because it was so familiar.
When something bad is going to happen in a movie, there is a shift in music that gives you a heads up. That happened when Mike’s voice had the most subtle change when he said words with an ‘s’. As if he had had dental work. Weird shit happens all the time in the human body and most of it is simply an odd yet benign story. When it persists, we were not those who panicked. There was a tipping point however where reality would not be ignored, and that curiosity was fair to satisfy.
He made the appointments, including a tongue EMG, which we imagined would be much like toothpicking a grape on a plate. Spoiler alert, the doc places a tiny needle into the tongue through the underside of the soft part between the wishbone of your mandible. Ew, yes, but Mike said it was not as bad as he had imagined, and I watched every bit. An EMG machine has a graph readout like a richter scale, where the tremors in the muscle also have an auditory version, kind of like the coming and going of the famous bit in the Jaw’ theme. We walked in expecting to get serious data. We walked out in shock, knowing that he was going to die before we were ready. Moments after receiving the news, we ran into a rarely seen but always liked human, Barry. We didn’t tell the truth when he smiled and asked, “How are you?”, yet could not be normal during the incidental, nice to see ya, kind of conversation. As a doc, I’ve always wondered if he recognized our walking shock, and knew we had experienced a snapshot, life changing moment.
That day, after the richter scale and my eyes discovered the body-wide, constantly fasciculating muscles, my beautiful best friend husband, Michael, was diagnosed with bulbar ALS. If you have not heard about this disease, it’s up there on the list of what you don’t want disease-wise. One retains full sensation and cognition, while muscle function progressively melts away, with the first to be lost, the muscles of speech, swallow and breathing. Unusuable muscle mass shrinks to the thickness of fabric, slowly revealing the bony frame beneath. His beautiful face changed. Cheekbones are usually soft and round with muscles well used from smiling and laughing. When those muscles weaken, it reveals bones like the flying buttresses of a gothic cathedral, prominant below the scoop of temples. Living or loving someone with bulbar ALS is having a front row seat to their progressively losing the ability to communicate, eat and move, while being locked in with their voice and imagination, and what everyone else has to say. Bulbar ALS is a nasty mother fucker of a disease, and there’s simply no other way to put it.
“where did that come from/ this surprise change/we had no idea/our lives would be turned upside down which doesn’t rhyme and is also a staggering understatement.”