Down in Albion
why why what is god damn why does aaack. awful drooling from torture smells. every sound is like a dagger into my skull and there is so much noise i cant take it i gotta get away before fuck now i am angry and the only thing more frustrating than being unable to communicate is being unable to communicate when you are in a rage i cant even kick or scream everyone is torturing me i hate them. pain everywhere yet nothing hurts but everything is chaos and i cant think. i hate the world and especially the short circuit that my brain is right now. fuckFUCK. i wrestle free and ride to the most remote room.
in. out.
i am an island.
in, out.
deep, slow.
calm, at ease
smile, release.
present. wonderful.
I have to work the mantra quite a few times before a smile appears and I feel release. Present moment reveals beauty in the noise. Why the heck is someone using a blender that sounds like an industrial jackhammer?
Oh, that’s right. Because my friends are trying to accomodate me for dinner. We drove all day in a rented wheelchair bus to this insane villa (with hot tub with hoist!) near Oxford so we could enjoy a potentially last holiday here. We even brought our own nurse, and Miga is blending the pear-and-blue-cheese salad so I can try and have a taste without choking. In the words of the famous poet Kiedis, and I quote from his better known work Can’t Stop: Garmt, (ever wonder if) it is all for you. Yet I exhibit clear signs of mental breakdown.
So I retreat, I breathe, I compose this post in my head. I cry, feeling like things cannot get worse, I get warm during crying, that is nice… wait a minute. Ah. I get warm from the contents of my stomach, which is flowing out of me from the PEG-tube which has opened as a divine reminder that things can always get worse. Cue Lou Reed, it’s a Perfect Day. I soak in my own acid and cry for help.
I had wondered lately if I am getting too soft on myself. I produce nothing. I create nothing. I do one or two professional tasks a month. I spend most of the time I do have on my damn gmail inbox. I hardly work on the most important piece of my legacy, the letters for Zoe. I know of patients in worse condition than me who run companies (yes, plural) or organise things and accomplish stuff. Why can’t I? Supposedly ALS leaves the mind intact, well, except for the 15% who get dementia, or was it 16%, because I forgot, ha ha. Why don’t I kick myself in the balls to start showing some discipline and get back to work? Treeway, MinE, Accenture, Qurit, they are all waiting for me. Or perhaps they are not. No one is irreplacable.
Kicking yourself in the balls does have its uses. I remember being depressed for some time, again, and being sick and tired of always getting depressed, so I kicked myself and bought a notepad and gave myself some homework: no matter how bleak your day has been, every evening, you will write down three positive experiences. You depressed asshole, you. Well allright then, I moped to myself. At first I was bummed to write down: the high point of my day was a sandwich for lunch. Not even a nice sandwich. Just a roll with cheese. That outdid everything my overpaying high-lifestyle job had to offer. A roll with cheese. As the weeks progressed, I noticed that my exercise was working – spending your day looking for high points is better than sulking your way through life. And more importantly, I started to learn what made me feel good. Apparently, I had wired myself the wrong way, and I needed a stupid simple kick and some homework and some discipline to rewire. Anyway, bridge to the next paragraph, after months, food still made it to the top three nearly every single day. Food beats antidepressants.
Back to our villa near Oxford. After I had been stripped naked and showered and cried with and laughed at (without being able to retort, but it is really cold in here!, that is why!), we gathered for dinner. Menko was chef today, and as I have stated before, his cooking outdoes a dinner at any one-star and most two-star restaurants. I watch my friends enjoy, chew, swallow, EAT. I try to be happy for them. I try to enjoy the sight. I try not to choke on my bite of blended pear, and I fail. I try to walk the road which I am convinced exists, the way to experience this disease while being free from suffering, the road where you transform your mud into a lotus flower, but… it isn’t easy. I will get used to this. I will enjoy my friends’ pleasure, I will not feel bitter. But… this particular wound, not eating, is still raw, so it may take a week or two to adapt, maybe even in time before the next piece of my life dies.
It dawns on me. Maybe this is what has been keeping me occupied. The constant adaptation, mourning, frantic groping for control, wrestling with words like eindverantwoordelijkeverpleegkundige, etc. Perhaps I am not being lazy. Maybe a kick in my own balls is not the best course of action at this particular point in time. I share this epiphaneous insight with my friends, whose reaction is laughter and an overwhelming “Duh!”. Ok. Nick Cave appears in my thoughts again, with the same cynical-or-is-it piece of advice he gave me the other day, in a conversation I am still writing down. It stems from his aptly ironic and ironically appropriate song, No pussy blues. He dictates:
That I must above all things love myself.
That I must above all things love myself.
That I must above all things love myself.
Ironic or not, I’ll take your advice. Thanks, Nick.
