I was pretty lost these last few weeks. Emotionally. Physically. Spiritually. I wanted to blog about it but somehow I couldn’t. I kept thinking what the problem could be.
i realized over the course of the last couple of days that part of this blog was pretending to be someone i want and wanted to be. I was shaped to be. I kept shaping and reshaping myself to be. If you have trouble understanding what I am talking about bear with me i will try to the best of my ability to make it clear.
With the diagnosis of ALS about a year ago my world shattered. Apart from the brutal facts of drastically shortened life-expectancy and fast approaching complete disability the question that was most intimidating to me was: If i am quickly fading to be the person i used to be, who am i then? Someone with a firm belief in something as unproveable, improbable and mystical as an unchanging soul might have an easier time than me with detecting and defining who he or she is after the physical manifestation of “one-self” starts to break down. With a worldview like this our core would naturally remain unaltered. (btw i could easily ramble on forever about the arbitrary division of physis and psyche but not today.)
As I have proclaimed in previous blog posts more often than once I personally came to believe that “one self” or plain “self” simply is an illusion our brain creates albeit a pretty stubborn one. ” Self” is something that is fabricated by us, trillions of neurons that make up our brain, the world around us, our parents, genes, …. Summed up: Conditions.
But it is not that easy. As much as we may be able to contemplate ourselves as a living, changing, fluxing processes, we at the same time can never escape the unconscious and intrinsic fabrication of a “self” that we cling to like the grey clouds over Berlin cling to the sky today.
Me-making. Selfing. I don’t know if there is a good verb for this.
So, coming back to the time of my diagnosis, the habituated and automatic process of creating my “self'” broke down. The Me-Machine had crashed.
I had defined myself in a lot of ways. From the top of my head and in no particular order: Husband. Loyal friend. Son. Father of four. Successful Sounddesigner. Workaholic. Durable. Marathon Runner. Hospice Volunteer. Intellectual. Musician. Funny. Arrogant. Witty. Quick. Heir to family property in Austria. Home owner and builder. Recovering drug addict, Strong, determined, dedicated, meditator, mediator, sensitive, egoistic, happy without company, well educated but without degrees., book lover, oolong tea connoisseur, cineast, cook, chilli and bonsai farmer, sarcastic, philosophy-savvy, son of a neurologist, oldest son, analog photographer, comic fan, mash-up artist, good looking, conceided, past in rockbands, electronic musician with loads of released material, world traveler,0
… But above all that my self-imgage revolved around: Intensity, Creativity, Productivity
So I am not saying that any of these things i ascribed to myself are wrong or made up completely. They are the fabric of the chameleon suit called ME which i tailored and keep tailoring to give me identity an and security. And like I said before, this tailoring process for the most part happens subconsciously and automatically and cannot be avoided. Just tweaked if we are lucky enough to be blessed with a little potential for introspection. Might be an illusion too. Apart from that? We all play multiple roles over the course of our days and days and days that make up our lifes Who are you playing right now? Who are you playing when you are at work? Which parts of you present to someone you would like to impress? What is your act in a different social class? etc…
So back in last August when i slowly started making peace with the beast by the name of amyotrophic lateral sclerosis i now think in retrospect that what happened was a re-organization of factors that i need for feeling like a worthy ME. Some stuff could remain untouched. Like the strong family ties that are so very much part of ME. Relationships to certain family members had to be redefined, but on the whole family stayed a strong backbone of ME. Other parts had to go. Professional life. Activities. For sure i was no marathon running dude any longer. Now ME was a former marathon runner. Like marathon running or working a lot of ME became ” the artist formerly known as ME”.
More difficult were aspects that of ME i didn’t want to lose or let go of but knew that they invariably had to undergo an intense overhaul. I was still a father, but not the active body-centric, hug.-a-lot pro-active dad i used to be. So i had to try to reinvent that part of ME in order for it to survive at all. Friendships, relationships, sexuality, marriage, to name a few fell and fall under this category.
I started the blog probably to prove to myself and my world that the central part, the most crucial building block of ME, remained unchanged and could not be touched. Even by ALS. It is the very part that has to do with the before mentioned character aspects of creativity, intensity and productivity. (amongst others). You could call this character. I wanted to show the world that i was of such strong character l, that this asshole of a disease could not get to me. Or if it was to get to me, i could still drag it through the dirt by making jokes about it. All this motivation behind “work and love” is not false or a lie, but i had to realize that again it is ME making. Here i am, making jokes about people who believe in stable and lasting souls, proclaiming that EVERY single fucking thing changes and nothing lasts, yet i am holding on to a delusion of a stable character, Christian, ME, wtf…. How vain of me…Did i really believe me, myself and i, or at least the weird part of us called character would remain the same with ALS?
Over these last weeks full of fears, existential roller-coasting up and downs, ALS once again taught me my own lesson. Gloria Gaynor remains an all time dance floor queen but she was wrong when she sang “i am what I am.”… The opposite is true… I am not what i am. How could I be under constantly changing conditions..? Or like the Japanese poet Basho wrote in the seventeenth century
With every gust of wind,
the butterfly changes its place
on the willow.
When the last weeks brought all kind of hardship to me, i was not able to admit to the consequential inner developments. And i was even less inclined to write about them in my blog. I was not the man i wanted to be.
I was afraid almost all the time. I was uncertain about almost everything. I was shy and did not want to see people. I was hopeless. I was not able to reach out. I felt worthless and small, especially since i had absolutely no urge to be creative and productive. All medical issues were really getting to me. This entailed the feelings of shame. When I was meeting people i was pretending to be fine. Deepest sense of not being enough. I was often unfriendly. I was lost. What was the whole point? I was this. Then. Who am i now.? Who is ME?
The only honest answer is that i have no clue whatsoever.
This is not a confession of my weaknesses. This is more a description of the suffering i caused myself by not allowing myself to be weak. If I hope this will change. Like everything.
I want to learn to love the changing ME more.
May all beings be happy