Even Flow - AlsDanToch

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.

Marten zegt:

03/03/2017 op 20:25

Thank you for posting, reading your stuff is one of the important things I get to do, not just to keep up with you, my friend, but also it is a good thing to understand other people’s lives, to put myself in some extra context.

Out of curiosity, why is/was it 23h,1h,23h,1h? Do you need 23h to ‘recover’ from the 1h freedom?

garmt zegt:
03/03/2017 op 20:39
It was actually an hour spread out over intervals, the longest one being the shower, but also transfers or getting dressed, which are a nuisance to do with the breathingmachine attached. I can go without breathingmachine but it tires me out quickly. I clung to time without the machine because once you give in, the ability to go without crumbles. Once I am fully dependent everything gets so cumbersome. Thank you for reading, old friend!

Mike k zegt:

03/03/2017 op 20:30

♥

garmt zegt:
03/03/2017 op 20:41
rascal.

PP zegt:

03/03/2017 op 21:03

Garmt. You are amazing. Tougher than anyone I’ve known. You ARE still kicking ALS in the balls. Started so many important initiatives – that will impact the lives of many. Take care my friend. PP

Fran zegt:

04/03/2017 op 15:54

It’s just heartbreaking to know that you and so many others have to struggle with this everyday. All I can say is God bless you and give you strength to fight. ALS took a beautiful soul from our family. So very sad.

Corine Steenbergen zegt:

04/03/2017 op 18:09

So damn proud of you…

Remco zegt:

05/03/2017 op 14:30

Garmt. I read your posts all the time. Being as tough as you are, it may sound strange to wish you even more strength than you already demonstrate. You keep amazing me with these stories, about your emotions and your moments of happiness. It’s these stories that help to create awareness. A true inspiration and testimony of you kicking ALS in the balls. Keep it up. Remco