a morning in the life of….
Over the last few days a weakness has imbued my whole being in a way unbeknownst to me thus far. You might rightfully reply that this weakness theme is somewhat redundant and whiny by now. Wait a minute. Perhaps it is the other way around. Perhaps I’m just boasting. Because if you look at weakness as an accomplishment, you’d have to admit that I’m getting better all the time. My newest personal best in the weakness discipline has its basis once again in the breath. My breath at times of the day is so shallow that i am having a hard time detecting it myself. Since I am not dead yet it must be somewhere, right? I guess I should be hiring a private investigator. Joke aside, it really is weird. As if inspite of constantly reiterating publicly that i will be fully dependent on mechanical respiratory support shortl, a part of me has been and still is living in denial. Note to self: The shit is going down. This is really about to happen. Reality is about to overtake me yet again.
So I am using this post as a means of aligning third person truths with my first person ones. Call it reality check if you want. A morning in the life of …. OR attuning to the way things are.
I cannot turn in bed anymore. When i wake up around six in the morning often a soft crescendo of panic sets in right away. I am still under the thick rubber slash silicone breathing mask covering mouth and nose which I cannot take off by myself because neither my arms nor my hands functions anymore. Panic. Amygdala Highjack Operation in full effect. What a rich and intense concoction of feelings. But alas! My wife is there. Or next room preparing the breakfast for children. Or showering. I try to control the panic. This is a good machine. It helps you get the air your body needs. Sometimes i scream. It’s actually the faint shadow of a scream. A muffled memory of a lion. Darth Vaders intercom don’t work no more. When my wife takes off the mask and transfers me into my forever chair i already miss the mask. No. I miss the effect the mask has. I don’t miss the mask. The transfer from bed to wheelchair is a multi-step process brought to perfection by Anja. I am still above ninety kilos and as a helpful as two large bags of cement. But wait. I am selling myself short here. My stiff and spastic legs can be useful. Swan Lake solo.
Back to the program.
The best part of this transfer is the long and close hug i get with Anja gasping breathless whispers of love into her ear. She smells so good. Her smell is reassuring me i am home. True love. Which is all that it has ever been about. I may have been given a bad break but right here in her arms I consider myself the luckiest man on the face of the earth.
I hear the boys fighting in the kitchen over who gets the bigger oatmeal. I can’t just go there to tell them that traditionally the biggest slab of the delicious cinnamon – sugar covered classic belongs to daddy orangutan , king of the jungle, me myself and I. Neither can I yell. By now you know why.
Before i join the gang in the kitchen. I have to be shuffled into position within my wheelchair which is an intricate maneuver that involves four buttons and motors on my chair and the proper abuse of my spastic legs pushing my ass towards its final parking position. By this time I am completely out of air for the first time of the day. It is 6.30am. But Anja is on my side, at the same time chief mechanic as well as my lovely flight ever-friendly flight attendant. Now we are almost ready for take off, we just need to pump up the volume (of my lungs, that is). This is done right there on the runway to the kitchen with a machine called COUGH-Assist. High tech all the way. Let’s blow up a balloon and the balloon is me. Let’s do it nine times…
…. Clears secretions from the lungs by gradually applying positive air pressure to the airway and then rapidly shifting to negative air pressure . The resulting high expiratory flow simulates a deep, natural cough…
after this it is meet and greet in the kitchen. Good Morning. While Anja works the miracle and simultaneously does lunch boxes for the three little ones, takes care that all teeth are brushed, all hair is combed, all school bags are packed, i get my two cups of coffee and everybody stays on track i order to catch the right train, I sit still (what else am i to do???) in all this turmoil and pretend to be fine. Which is correct for at least 51% of it. I am happy that in spite of ALS running large portions of our lives we still are a regular family with the regular mornings with laughter, fights, jokes, tears, you name it. I love these kids so much. Often they come to me and kiss me before they’re off to school. Ava whispers in my ear you are the best father in the whole wide world. My cheeks burn. Fire and Ice.
The 49% that are not so fine are because i wish i could go back to being the dad i used to be and of course because my breathing is so labored that… blablabla…. we’ve been there. I am starting to bore myself.
Just when everyone is about to leave the house the doorbell is ringing. It is my nurse. But this is another story and shall be told another time…