Zoe blessed this day by climbing on my bed with me in it (uttering “Daddy is a climbing frame!”), transforming it into a train, tjoeke-tjoeke-tjoeke’ing first to Mama station and then to Portugal. She looked long and deep into my eyes, a rare treat, before descending and running off at top speed. This girl is very comfortable with top speed.
A blessed day it may be, I disgruntle inside. No, that is not a verb, I know, shut up, you’re making it worse. I’m on ventilation 23 hours per day, roughly. I cherish that free hour, using it to enjoy a daily shower without the constant, fast pumping of a machine. Today, though, I’m going to 23 3/4 hours of ventilation per day. No more breathingmachine-free showers. This change means nothing to everyone and the world to me. It’s another concession, capitulation of another piece of independence, another surrender to the disease. Kicking ALS in the balls? Ha, a vain dream for me, these days. Others do, and some small parts I helped put in motion, so, hey. But, me? For weeks now my struggle has been to get enough energy back to just think clearly, maybe even to write, so I can perhaps slingshot my spirit back into another round of battle, out of this swamp of lethargy and depression.
Well, you’re reading this, so what happened? Did the new drugs finally kick in? No. Was it that I finally, for once, went to bed on time? Perhaps. Was it taking Iris’ oft-repeated advice to shower with the breathing machine on, so I won’t completely tire out myself by doing the heavy work of said machine on my stubborn own? Likely. No, what turned my mood, what gave me this tiny flame of inspiration that I will hopefully kindle
into a fire… was the following:
Cold. Shaking. Waiting for the water to warm me. Spasms, they hurt. God, why can’t I just grab the shower head myself? Frustration builds in my stomach. Everything is shite. I turn to the meditative exercise that has always, always been here to help me: counting the breath. 1… 2… 3… The machine pumps and wheezes.
“But it’s not even MY breath I’m counting!”, I think, exasperated.
“Was it ever?”, Buddha answers, peacefully, his voice bright as daylight, clear in my head, loving.