41 funerALS

merlin_133142813_ce392495-b64a-4f7e-8c2e-a7e21d23c0c6-articleLargelast night I woke up around three. And i could not go back to sleep somehow. Back in the days that would have been the perfect opportunity for an unmasked fridge robbery but now I usually have to refrain from sinning.  So what is a motionless man to do? X. , my caretaker is in my room, there is a dim light from the corner. I hear her turning the pages of her book. She is a crime fiction reader. When she is there I feel safe. Each time she puts the full face mask on my face she whispers…. Sleep well., and I will watch over you.  Love has many shapes.

My thoughts did what thoughts do, they kept wandering. All over the place, way down memory lane from my childhood and right back to the future. But then I got lost in a wormhole leading to thousands of thoughts about my death. Not helpful, you say? Not my choice, i respond. I have been contemplating death since I was a child, it fascinated me in a lot of ways, because it brings up endless and totally relevant questions if you aspire to be a complete human being.

Can I know when I die? What exactly dies?  What is left of a person? What is a person? Is there a part of us that, no matter what, remains the same from the cradle to the grave? What happens after death? What does that the actual moment of dying feel like, in case you happen to be awake and aware?  What is bad about death? Is it attractive to live forever? Etc. etc..

This time I ended up ruminating about the question how I will die.  Of course this is as unknown to me as it would be to anyone. But i have a few advantages in the guessing game. For I have ALS. – ( hard to believe but out of nowhere the theme from JAWS appears  suddenly  in the back of my bedroom) because with ALS the ways to die are somewhat reduced.

What are the obvious choices? Well, it depends. First off, we need to know if there will be life prolonging measures like mechanical ventilation. Because if you don’t., then number one cause of death with ALS, top of the pops if you prefer, is respiratory failure. Which is not suffocating btw, but in most cases carbondioxide poisoning, caused by the inability to breathe out properly… With mechanical ventilation the  strong likelihood of  death by means of pneumonia may participate in this race with a very good chance of winning…

Well … beats death by torture if you ask me. So cheer up.

And what if I don’t want to go any longer!? Wait, wait. Didn’t you just write in your last blog post that you were going to show up no matter what to find out what this life had in store for you??? True but at the same time untrue. Because my feelings never stay the same., especially when it comes to terminal matters. On Saturday I want to fight and on Sunday I don’t. On Monday I want to die right there and then, and don’t you ask me about Tuesdays.  Fact is that I am a coward. And while I would have legal option in Germany to end my therapy if I was tracheostomatized,  which means that mechanical ventilation would stop and i would Die . This would happen under the supervision of a palliative doctor. But i can’t imagine that to say stop. And this scares the living daylights out of me.

Following scenario in particular. Although it is said that ALS doesn’t affect your eye muscles that is not correct. If you manage to live long enough and if you are part of the in-group your eyes will get affected and your ability to move your eyes will slowly come to a standstill. Locked in.!!!! The brain is working but all connections to the outer orbits are lost. You are all by yourself. (Recently I heard a scientist researching locked in states comparing these to states of deep meditation…. I am not so sure if it I want to find out funny first hand. Imagine he was wrong and is rather resembling purgatory. Can I in this case get my money back.?)

I really don’t know if my eyes are already affected but I do have the impression (leaning towards conviction)  that they are. Why? In the beginning, when my eyegaze system  i was chiseling away the texts at the speed of light. Or ALS speed of light which is turtle speed, but on the fast lane. Right now the tempo at which my eyes write is reduced to a turtle traffic jam speed. And not the ninja kind.

At the heart of my life is the need to connect. And if the means of communication slow down when will I get I at a point when I will give up? Stephen Hawking was at seven words per minute at the end. will i be able to adapt beyond that? And still be happy?

Funer als… Are there All the time…

A funeral for my legs. My arms. My tongue. My smile. My hands. The list is almost complete. But how am I to write an obituary for my eyes without my eyes?

Or will this be the time when I choose to die?  ( you will be informed before that…. Promise…. Großes Indianerehrenwort!!)

Things you think about when you can’t sleep…

 

 

 

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40 Angels and Demons

1865 Leloir Jacob_Wrestling_with_the_AngelMy 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.

 

 

39

 

PIC0078Punx not dead. I am not dead. Death is very much alive himself. He has submitted to the fact that he runs by his traditional name because people don’t seem to be able to come up with a more true and appropriate name. Which could be transformer. You know the car that can turn into a robot. That’s death. That’s the death of decent action cinema anyway. But of course I am talking about something else. Death is a concept that defines entities. If you are a cat mouse dog tree human being you can die. If you zoom in on the molecular level none of these deaths are visible or relevant anymore. ‘It’s just the transformation of energy stateS. Perpetual change. Where death seems like the remnants of a big burning and crackling fire called life,  in reality ashes and the fire are both life. There is just life. Electrons going about their day to day. Life could also be called transformer. Life and death are both the same. Cars that turn into robots, fires that turn into ashes. Bodies that turn into corpses. I used to have a favorite t shirt which featured the printed truism: This body will be a corpse!!!  In spite of the fact that it was telling something as banal as the tree has leaves people were regularly put off by it. Why? Because we believe in death, we fear it, because we are not able to see things as they really are….  We can catch glimpses of it, maybe… with the means of meditation or lsd or sex or music or children or diseases or near death experiences. But a glimpse is but a glimpse and not the seing things as they are. We can develop and describe concepts like the one I am laying out in front of you as we speak…

All this runs through my head and much more as I sit in a small prop plane rising and roaring to 15000 feet. I can’t hardly move a muscle in my body, my breathing is labored, for I have ALS,  a transformer of the meaner and rarer kind. Death will get me sooner than the average bugger,  so they say. But what does it mean? Really mean!!!!?? I don’t buy into the pretty pret a porter answers of TV evangelists, so  I have decided to take an addicts path to answering questions. Which is known under the name of skydiving. Sounds stupid? You bet.   Perhaps  I will get some answers… Even if I were to wish to reverse this plan, at this point it cannot be undone!  Packed like sardines in a tin can, the fourteen of us will be thrown out at the designated altitude,  we signed the contract. In my case my wife signed it, she it is legally in a position to do that. If you are a full blown quadriplegic you need someone you can trust, especially if you can’t speak no more.. While the guy that I am tied to, an eccentric adventurer who developed a skydive suit for disabled people is making funny signs, my wife and children are waiting on the ground. Like a million skydivers before me I ask myself the decisive question. Wtf am I doing here???? . The guy next to us opens the plane doors.. He smiles. Why?

The last months have been hard. As much as i can theorize about the absurdity of death, I can’t deny how much I fear it. How I have panic attacks in my bed, convinced it will all be over this very night. How I cry and get angry and swear and despair about not being able to live the life with my children as i had always dreamed. They are so small still… How I wanted to travel with my wife. Hard weeks. Hard days. For all of us. And i have to admit that more than once the thought crossed my mind, wouldn’t it all be better be over with. But i don’t want the big transformation just yet. The one ending with me in a crematory, after my organs have hopefully been taken out of the corpse formerly known as me and helped someone else. I am not ready. I am not fucking ready. I am ready to be transformed once again.

And at 15423 feet we jump. We? If you have ALS you might need the occasional hand. So my helping hand pushes forward and and and and….  We fall.. …. I am alive. I don’t think it is possible to feel more alive. And my pants are full…

The only answer i got was: It is not over until it is over. FINE BY ME!!!

38

topics_TRH_communicationWhat’s up doc? My last post seemed to have shocked quite a few people. Sorry. Superhero timeout. First,  thanks for the mails and the supportive words. Means a lot. My intention was not to shock or whine or make anyone feel miserable. Not at all. My intention was and is to give an honest account of what my condition feels like. How it is to live with ALS, to live with a withering body, to experience rapid decay, to love in spite of loss. And honestly (what is most important) to make myself feel better through putting my inside,  soulside, guts, network of neural activity, whatchamacallit…..  out there.  Where it can find you. So you can still find me. It is a nice clearing in the darkest woods, with a pond, all the animals come here to drink. My blog pond….

One new form of communication for me. I am happy I started this blog early on. For one because I started learning  the eyegaze typing at a point of my disease progression that was not at all obvious or mandatory because other means of communication were still available but in retrospect crucial for my soul survival. Learning something meaningful  and challenging gives you purpose and direction….  and purpose and direction are probably more important for a fulfilled life than happiness. Also because it attuned me to the fact that drastic changes take drastic measures if you want to cope.  in just one year my whole way of communication has changed because it had to. (If you happen to have ALS i can’t stress enough to learn eyegaze computing early on.)

If you want to stay in touch with me,  and i mean by that more than the exchange of factual information but touch as in touch,  you will have to change the way you communicate with me as well. But later more. I am fine about silent readalong readers ..  if you just want to know how I am doing or want to inform yourself about a first person perspective of ALS or like my writing or disease tourism or whatnot…. be my guest…. I have not overcome my vanity. Any reader is a good reader. If you want communication with me  it is always possible. And always voluntary.

So unless you are in a special situation (like so many people, refugees, disabled people, etc…) you don’t think about communication all that often. You just do it. With all means available to you.

Like Speech. With all its nuanced beauty of volume, timbre, tonality, speed, rhythm, and choice of words. I don’t have that anymore. I can type and an even eversame voice resembling my own old voice will sputter out the content without any emotional connotations. So if i want my words to sound ironic, soft, soothing or angry I have to find an equivalent in phrasing or vocabulary to make up for the lost features of regular vom . But that ain’t easy. Because time is time is time is time (is a rose). I don’t know what the average word count per minute is for an undisabled person . But i know one thing. That you do not have to painfully slowly wade through single letters in your mind to tell your friend that he she it looks nice or can fucking go to hell or to please have a cup of tea.  If I want to say something nowadays it takes too long. But too long is all I have. So i need your patience. If you want to be friends with me you better work on your patience. If I had a day with a lot of typing my eyes get tired and that entails a slower output. More patience….. Etc….. But it is possible. Only very different from regular conversation. Use me as your serenity teacher. Use me as your silent monastery. Use me as your quiet friend.

Gestures. Back in the days my hands and body did at least fifty percent of the talking. I don’t have that anymore. I could spin in my forever wheelchair to indicate I am happy but that is about it. Gone baby gone.

Like Facial Expressions. The way you look at me. Or in Bogart’s immortal words Here’s looking at you, kid. Voluntary facial expressions are often socially conditioned and follow a cortical route in the brain. O!  Damn! but something is breaking down in my brain. Motoneurons. I can still muster up a smile and i still frown like a champ but the look….  it is leaving me. Already I am quite motionless in my face. Faceless. Faithless. I don’t have that anymore.  This is a much bigger biggie than one might think. As humans we are hardwired to read and interpret the facial expression of our fellows. This happens automatically and at an enormous speed. It is necessary to help us function and survive socially. People who can’t read facial expressions live in a separate world. Now the ugly truth is that soon all my facial expressions will be gone. The ultimate poker face. You will not and cannot detect automatically anymore how I am feeling. But listen up! Now comes the hardest part. By looking at the blank stare formerly known as my face you, or more precise a part of your brain uncontrollable by you will automatically and subconsciously assume that because it sees no emotions in my face I have no emotions. That is a scientific fact. Aaaarhg No! No!  No!… Relax. Dude. I’m not saying that you don’t know that I of course have feelings on the inside. But you have to switch your mind from auto exposure to manual mode for that reflection.  Which makes reading my feelings a multi-step process. One. Reminding yourself. He looks stoic. But that is just ALS. Two. How might he be feeling? I have to look into his eyes, search for something. I have to ask him.How are you feeling? . I have to wait. His answers take a long long time. Three. You have to probably be around more often to understand the emotional going-ons of Stale Face Caesar (how’s that for a gangster name, huh?!)  No intention to get overly dramatic. All I am saying. It will take a lot of your time and energy to keep up a relationship with halfway functioning communication with me. Rest assured. I don’t blame you if you don’t. Just drop me a text from time to time. That is already a lot.

Which leads to…. Don’t you feel rejected please! A lot of people (oh lucky me) are thinking of me and want to visit and hang out etc… But because communication is slow, complicated and tiring plus I still love to spend time with family and alone (very important!!!!!) I can’t see y’all. It doesn’t mean no nothing. it’s just the realities of ALS…

Love will find a way? Until I have figured out that telepathic thang, the Internet with its whatsapps, emails, Facebooks, Skypes, etc…will remain my gateway to the world. As limited as that is, I still am truly grateful.

Love will find a way?

I hope so.

I don’t want to lose you. I don’t want to lose myself.

May you be filled with lovingkindness.

May you be safe from inner and outer dangers.

May you be well in body and mind.

May you be at ease and happy.

 

 

 

 

37 (little shop of horrors)

Study for Portrait II (after the Life Mask of William Blake)I wish I could report that it was finally going uphill. But the headline for the recent developments most appropriately reads ‘the little shop of horrors

Chapter One or I can’t get no sleep

Now that I have such a tough time breathing on my own and the official advice to get extra energy through NIV,  which stands for non-invasive ventilation, i seem to have turned one hundred eighty degrees. At night I am flat out paranoid most of the times under the mask, urging my varying helpers to take it off ever so often. I am afraid they will start hating me because I’m not at all an uncomplicated night shift anymore. Officially they shouldn’t sleep anyway because in case i get serious respiratory issues or puke in my mask or whatnot they are my designated rescue unit. But of course they fall asleep. I don’t blame them. Some snore quite musically. Back in the days I would have recorded their snoring and put it in my sound fx archive and eventually they would have ended up in some film. Oh how I rejoiced in these fine moments of sound editing bliss. But they are over. Now it’s me, panicking under the mask, claustrophobic flashes this is the end, that’s it, no one here to note i am not whispering Rosebud … But they always come. I live!  But the result is that i have the breathing mask on my face for only fractions of the night. I can sleep without mask. Still. But then my carbondioxide levels in my red juice get so high that the next day is tired drained exhausted fucking Shit,  that really makes me believe the best part is over.  So the goal is to NIV. I don’t know what has changed. The one thing that is supposed to bring me relief scares me like I have never been scared before. Probably because I now am truly depending on the machines.  Dependant. Helpless but with a little help from my friends. I dread the night. This is the Upside down.

Chapter Two or Lost in translation

To stay with the subject of my nights, a huge problem is talking to my helpers without my computer, which, I totally hate it, goes to bed at nights as well. Let us assume the case that I wake up at night because some spastic cramping in my legs has moved me around in bed so I now reside there diagonally.  What do I do? I moan as loud as i can in my planet of the apes persona, yes the Charly Heston original, and around the corner a helper rises, aching, playing along in the Classic apes movie. He or she turns on the light and asks. What is it? One look at me could have told them if you ask me, but then,  hey, I might be biased.   So they take off the mask, turn off the vent, and ask again. What is it? Now comes my great Academy Awards moment , and I dramatically exclaim like a person who can’t speak because of muscle weakness….. Aaaaaooouuuuusssbbbeeeeedddiiiiaaaaoooooaaa….. They understand immediately.  You want something to drink. No problem. And off they rush leaving me just enough time to throw a nooooaaaaoooo in their back. Window open? Ooaaeeonq You need another blanket? Oouuuutrqaaas… Oh now i see. Oh dear. You look like an organic cucumber. Let me straighten you and pull you up in bed. Life can be so easy. Ask and you shall be heard. After this little exercise I am so knackered that i contemplate suicide. But how to tell them to help me with that? Oooogaaeeembuuuu.

No hard feelings. It looks like it’s time we develop a chart for my caregivers to point to at nights to which I will just have to blink in turn. Simplify your life.

Chapter Three or Access all areas

With the start of twenty-four hour care space, and i mean true private space has become the most rare commodity. And i am off better than the rest of the family, believe me. We have three rooms. One of them is the living room kitchen unit for everyone. One hospital room for me and the nurses, my totally private area  behind a cupboard around three square meters. More than most families in Lagos or Hyderabad i know. I have always been a spoiled brat. The last room is the children’s room. All three little ones sleep there on an ingenious bunk bed construction. Plus Anja who puts up her camping bed up at night. She is worst off for sure. The nurses are nice or seminice. They give us a life. They take from the life. They do to their job. They have individual smells. Some talk.  Some smoke. Some laugh about things I do not find funny in the least bit. The children are curious but interestingly stay at a natural distance with them. Some nurses have tattoos. Others come from Africa. I have ones I look forward to seeing because without any extra needed word they make my life easier. With others it is still work in progress. Right now i am in the paradox situation that i have what most ALS patients around the world want,  a fully insurance covered twenty-four hour team Coming to our home ,  and for the first time I truly begin realizing what it really means never to be by myself anymore. This is affecting me at such a deep level that being with the wrong nice caregiver i get panic attacks. Go away my mind screams, answering instantly, don’t leave me alone!!!! Right now all I can do is trust that some inner doors of acceptance will miraculously appear and it will become easier to live in our hospital home. Anja and I are both raw to the bone. I feel like I am turning into an impatient monster. Oh my god. She is the love of my life, I don’t want to wear her down. I don’t want our love to become a hollow shadow. Today i feel like I have nothing left over to give. Except perhaps a few interesting sounds resembling jurassic park material.  Or letting my computer voice tell my children that i love them and that they have the natural right to be happy and so So. Still floating above zero.  Barely.

Epilogue or I can’t cry

Yesterday Anja and i went on one of our beautiful walks across the nearby cemetery. I had tried to tell her that my clear and definitive wish to play along with ALS as long as technology allowed for it, had changed to  a more doubtful color under recent developments. I don’t know any longer  if i am the man i was hoping to be. The thought of the distance between me and the world. A tear in the fabric of my life that is getting ripped bigger and bigger by forces out of my reach. Today i don’t really want to live. Yesterday and the days before where the same. Perhaps it is just the next awave of disease typical depression. I am a marathon runner under the influence of dark matter.  No need to tell Anja all this. We are still soul mates, she has instinctively felt what was happening on my inside. She cries. I cry. But i don’t really cry. Because sobbing like I want to and need to,  you need muscle control. Bet you never thought about it like that. I feel like crying like I never cried but i can’t. Silent tears accompanied by whale songs of a different kind is what i have to offer. Readily i give.

One mantra I learned along my way is, don’t kill yourself before the miracle happens. Half-heartedly i repeat to myself…. Da capo ad infinitum.

 

 

 

36 (or fragments of ALS)

KONICA MINOLTA DIGITAL CAMERAUpside Down

It is so much up and down at this point in my ALS dominated life that the term rollercoaster ride would be an euphemism. Experiences are usually quite intense and condensed for me which stands in stark contrast to the seemingly unmoving facade of my body and face. I may look like Mr. Ultracalm from the outside but am a volcano on the inside, a hurricane,  a flood, a bushfire, an earthquake. IF i am operating, i am operating on a level of biblical proportions, any less would be an unworthy disappointment. I signed up for a big and cinematic life. Now i want my money’s worth. And i get it!!!!  Too much going on and too much confusion in my brain to construct one coherent narrative for you today. So it will be fragments, in no particular order. Thanks for tuning in btw.

What a difference a day makes

Springtime has hit Berlin. Finally i overcame some of my hardening tendencies to stay inside all the time, (eye)gazing into the void…. (problem with eyegazing technology is that infrared and sunlight are natural enemies which means that I have to accept being robbed of most of my more refined communication options once in the open grounds) Anyway,  Anja and i went for beautifully silent walks in nearby Buergerpark and the adjacent cemetery. Instantly I knew what I had missed. Nature. Source of joy and beauty and greatest teacher.  Lilac crocuses everywhere. Crocus was a mortal youth who, because he was unhappy with his love affair with Smilax, was turned by the gods into a plant bearing his name, the crocus.  Seing another spring cycle unfold brought tears to my eyes. Birth. Death. Change. It is the law. I have written a lot lately how change with ALS  is challenging and distressing at times. But at the same time it can be so comforting to know that nothing lasts. Paradox Party. Change is the constant. The cemetery part of our walks was rounding these refreshed insights off. I have always loved cemeteries. Dust to Dust. Atoms and electrons. That is the beauty of this life. Energy is not and never lost.

The look of love

One moment during one of our walks was super special. As Anja was driving me through the park, my hand to weak to even push the wheelchair Joystick by now, a young family was approaching us head on. The mother was pushing a buggy with a perhaps one or two year old toddler inside, wrapped in cozy blanket.  When we passed them he realized that i,  just like him, was being pushed in a cart. Like things.  Upon that realization he sent me the sweetest we-are-together-in-a-secret-conspiracy smile one can think of. We got it made buddy. Let the others do the walking. Wonderful moment. ALS Top Ten. Priceless.

The sound of silence

What has been the hardest issue in my ALS journey, so painfully sad, was the losing of my voice, which has recently progressed at breakneck speed as if to say.: Well if you have something final to say,  say it NOW. And I said it. I told everyone within reach that l loved them. I sang something for my sister that might with some good will resemble Happy Birthday. I uttered words and groans and grunts and gargles of love, rage and despair, my sore throat was like Whitney RIP Houston on her final world tour giving the most desperate and heartbreaking performance of a lifetime to put out there one thing I AM ALIVE. We also surely had a lot of good laughs. Who was that he jodeling drunk in the living room? A new game show on TV:”Guess what the man in the wheelchair is saying!” But where there is sunshine there must be rain. So in order to make myself perfectly clear, losing my voice was the hardest and saddest thing i experienced thus far.  It has been crying time again. I cried a lot. And it helps me. Grief over the death of a dear friend. Often now when there is a conversation going on around me,  in my head there still is the response t I want to say,. But i can’t so I don’t. Sometimes i try typing it with my eyes but once I am ready to output it through my TTS (text to speech) i realize that the conversation has moved on so far that forcing my little soundbyte/blurb in would disrupt the whole flow. The circus has moved on. Usually it’s not important anyway. What I now ask myself is If after living with this condition for a while the urge to contribute in these kinds of situations will dissappear altogether ? Or will I become more and more of an uninvolved witness? Will i be frustrated or content or i don’t give a fuck? Every way you look at it,  it is and will be more than anything else an inside job.

Hungry Ghost

Speaking is closely followed in this race by eating. I do still eat. Selection of cuisine style is somewhat limited by now. Ranging very high on my menu is soft, soupy, mashed, small, slimy& lukewarm …. In short babies food. The cycle of life. Let’s go back to our beginnings. Diapers are waiting around the corner to complete the karmic time travel do-over. not to mention the yukyukyuk high energy stuff i am being introduced to. Be polite. Say hi. Nice to meet you and your cousins of the cappuccino and blueberry families.

Tubular Bells

But eating will go. It’s exhausting already. Kind of counter productive if the energy you wish to gain gets burnt in the process of eating. But don’t be afraid young Jedi, there is a solution out there. And its name is PEG ,short for percutaneous endoscopic gastrostomy, a surgical procedure for placing a feeding tube without having to perform an open laparotomy.  The aim of PEG is to feed those who cannot swallow. Happened last week for me. Hospital and back. The surgery itself was rather trippy. Since they wanted to be careful with the anesthesia, since my breathing is weak already, they gave me something which didn’t put me to sleep fully during the procedure. While they were putting stuff down my throat and perforating my belly the surgeon and his tea,m were listening to news radio.. So in my drugged out state news on Syria, the Champions League matches and the weather forecast fused with the suctioning sounds and my own gargle. One thought i clearly remember was, we’well if that’s dying, i kind of like it. I came out of the operating room laughing. Anja blurry beside my bed. I am trying to utter somehow.,  I LOVE you. But she has no clue what I am trying to say. unintelligible bubbles escape my mouth. Which makes me laugh even harder. I have always had a soft spot for psychedelic drugs. 

Homeward bound

I am glad to be back home. But home aint home no more. What I haven’t talked about in this blog, the big change in my family’s life, is that we have people now living with us. Night visitors. They come every evening at nine and they leave in the morning at nine. It’s, you were guessing right, my nursing team. They supervise my mask breathing at night, they pass me drinks and food, they brush my teeth, they shower me, they put lotion on my body, theydress and undress me, they drive me around, they talk, they pick my nose for me, they make jokes, they wash my hair, they have lives, they read books, they smile at me, they look bewildered if they can’t understand me, they make me better or worse coffee., they are there. invasion of the body snatchers.

And that is the point. The end of privacy has begun. Don’t get me wrong. I am grateful. They are nice and great people. Appreciated totally. Especially since my wife finally gets at least a little relief.  Buti miss being by myself. A lot. A lot. A lot. There is a Jewish curse that you wish upon your worst enemies. It goes :”I wish you a lot of empoyees” Go figure.

And this is just twelve hours. Twenty-four hour shifts startingsoon.

I have had my first symptoms eighteen months ago. The diagnosis was exactly that this time last year. That is not much yet it feels like an eternity. So much happened.

An impossible year.

These days my achey little heart feels a little worn down by life events.

But i am here. I breathe. Not entirely on my own. ( was it ever your own breath? ,  to quote Garmt, who i miss terribly,  fucking ALS). But i breathe. And i think. And i feel. And i seek. For purpose.

 

 

 

 

 

 

 

 

 

 

 

 

 

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35

s-l400I 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

 

 

.
o