What’s going on? / Numb
It is 1 AM when I finally close my weary eyes. I am utterly, completely exhausted. In the past few days I burned up the little reserves I had, working too hard, recognising the signs but pushing myself because I don’t ever learn. My eyes, interface to the world and thereby the only thing keeping me sane, twitch and shudder. I entertain the thought, not for the first time, that the ALS has spread to my eyes. Anyway. A night of good, uninterrupted sleep will do me good.
The first thing I notice when I am suddenly very awake is the pain. Second, the heat. Third, the bloated feeling, like I have swallowed a bunch of beachballs. My stomach and bowels are so full of air that my lungs have no space to expand. The breaths I not so much draw as get pumped into me by the machine are shallow, and I try to think if my heated body is the sign of too much carbon dioxide in my blood or the sign of a warm night. Out of the corner of my eye I can see the alarm clock, but can’t make out the time other than that it starts with a 5.
First clue. The headrest is tilted a few degrees too low. The combination of clock visibility and ingested beachball sensation mean I blinked a second too early when it was being raised last night. I was suspecting that a lower angle would result in air being pumped down the wrong part of my throat; this experience confirms it. Ok. I cannot change the headrest but I can belch and fart. As I start to do both, the pain is next in line to attend to. It has receded from everywhere to shoulder, neck and cheek; the latter, because I am biting it continuously because I am trying to swallow because my mouth is full of saliva.
As I work to find a way to stop biting myself and calm my breathing, I find out that there is no way for me to put my head and neck in a position where I can relax without choking on my own spit. It is still 5-something AM. Beads of sweat trace down my sides and join their friends in the pool of themselves under my back. Ok. So I will stay awake.
If I say OK a lot, it is because I need to realise it still is. Iris is away and I fear my houseguests will wake up no earlier than 8.30, when the breakfast I serendipitiously mistaken ordered for absent Iris will arrive. I’m looking at more than two hours of concentrated attention to keep myself from choking. As the minutes creep by I realise that the possibility that I can’t succeed is quite real. This is probably the first time that death feels so near. I take a moment to acknowledge that, think things over. I take stock of my situation. “But I have so much life left in me!” “Regrets? No big ones? Really?” ” Well, I guess it is like the planecrashthoughtexperiment. If this is it, so be it.” Next, I compose this post. Really??? I am facing death and turn it into a story? I watch my thoughts for a while, and come to a decision. I will not die today. Let’s focus on survival: navigate your breathing through the treacherous swamp your throat has become.
My belief that I will not die is challenged a few times over the next thirty minutes. An alarm I never heard from the machine before makes me wonder if we plugged the machine in after yesterday’s nap. If not, this could be a signal that the battery is nearing its end. The mask is firmly attached to my face, if the machine stops I won’t breathe for long. My saliva thickens, becomes sticky, fills my mouth more and more. Hm. I cannot swallow in this position, and drooling into the mask will cause problem later on. I cling to the nerd’s bible’s motto: DON’T PANIC! There will be plenty of time for that later on, I have two hours to go still. I muse that it is actually a pretty intense thing, this ALS; even on a practical level I need all my wits to cope. Concentration slips, I get into a dangerous cough. And so on, and so on.
At 6.30, Juel walks in. My inaudible coughing has woken her, and together with boyfriend Flo, coincidentally one of the most interesting and inspiring persons I ever met, she saves me. Telepathically guessing what needs to be done they restore me in less than twenty minutes. I consider crying from elation but decide their morning has been messed with enough. I’m left to evaluate what just went on, and reexamine the thoughts I had in the face of imminent death. Well, my first thought was of Iris, but other than that, it was mainly the ego talking. I am such a self centered asshole. Well, no news there. But… something irks. My self acceptance feels like a lame cop-out, and as I write, this entire post starts to feel contrived and lame. I face death and how do I spend the day? By blogging about it? I didn’t once think about the unfinished letters for Zoe. Equanimity is great and all, but my behavior is more like indifference.
I try to console myself: Death wasn’t imminent, it was near. I stayed calm, I survived. I’m still exhausted, that is when you treat yourself the worst. Yeah. Maybe. Truth be told, I don’t even know what exactly I am trying to say, let alone achieve. I had hoped death would be more exciting? I wanted to get jolted into changing for the better, because it’s never too late? I revel in using words like equanimity? I don’t know. I do know that I am shaken and exhausted. Let’s get to bed, a night of good, uninterrupted sleep will do me good.
Wish you could take a little breath of me….
Ik ben hier vandaag voor het eerst. Je blog maakt grote indruk op me. Knap hoe je met woorden zo’n goede inkijk kan geven hoe het is om te leven met een lichaam dat niet met je meewerkt. Je geeft een levendig beeld van een ziekte waarmee ik dagelijks via posters en reclames geconfronteerd wordt. Dan denk, he wat naar. En dan denk ik, shit het stoplicht gaat net op rood. Met jouw blog is het anders, het grijpt me. Dankjewel.