40 Angels and Demons

My head is heavy. And I mean it both literally and metaphorically. Literally as the last section of muscles in my body that semi-worked, my neck muscles, like for example the one going by the almost poetical name of sternocleidomastoidius, are resigning their beforehand trusted services. Which means the first phase of transformation is almost complete. I can still  shakily turn my head and lift it but my guess is that once the autum leaves of red and gold will start their journey to the ground here in Berlin I will no longer be able to do anything without the assistance of somebody or something. Not even look to the left or right farther than my eyes allow for.  My accessible field of vision will thus be greatly reduced. And if my head happens to fall on my chest it will stay there unless I will be lifted up again. I might call upon the Lord then but the more earthly powers of a nurse will be needed for this task. I get lifted….. Ooooogh!

Not that I haven’t already lost every other muscle function. But as if the high priest of denial was inhabitating my brain, I seem to think with every imminent loss, perhaps by some mysterious act of nature this next body part will be spared. Rest assured that this won’t be the case. When I was first diagnosed, not unlike any other person with ALS did my share of research if there might be a slight chance of the disease coming to a stand still. Or even a reversal. Well they happen. But if you like myself believe in the truth and beauty of stochastics and statistics you rather play lottery than hoping to be the ALS miracle. I knew what was to come. But I didn’t know what it would feel like.

And now my head is hanging low. The demons are all around me.

But!!!

I am living and i show up. That is the key to the door called my life. I don’t know what will come but if I refuse to show up I am never going to find out what this life had in store for me.

So I in order to lift my metaphorical head and heart I want to compile a list with things I have done since my last post. And for every item listed the angels choir will sing Halleluja!

traveled to Austria by car (Halleluja!)

went swimming with the help of a lot of people for four weeks every day! (Halleluja!)

sat by the campfire (Halleluja!)

prepared and executed two musical afternoons for two old ladies (Halleluja!)

celebrated various birthdays, among them my son’s ninth and my forty-seventh (Halleluja!)

picked up my oldest daughter from the airport. She had been to Bolivia for a year (Halleluja!)

tested a robotic arm to be potentially the second ALS patient in Germany to use one. (Halleluja!)

wrote nine poems and one short story (Halleluja!)

gave extensive feedback on a movie script by a friend (Halleluja!)

moved house. Back to our old place… (Halleluja!)

Was in contact with friends and pALS every day (Halleluja!)

played really good russian roulette every day eating Spaghetti in spite of swallowing and choking issues… And won!!!! (Halleluja!)

watched my youngest son learn swimming

spent time with my mother father sister brothers aunts uncle wife children nephews nieces cousins friends and friends of friends and their dogs (Halleluja!)

went to the Premiere of a movie i worked on an rolled on stage in my wheelchair after some backstage adventures. (Halleluja!)

had sex (Halleluja!)

…. (Halleluja!)

… (Halleluja!)

I realize that this list goes on and on to the break of dawn… And that is good. Because it manages to convince myself that I am actually living quite a life. Not in spite of ALS but with it. Today the angels have prevailed.