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.

 

 

 

 

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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

 

 

 

 

34

Good-Morning-Beautiful-Coffee-4a 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 jungleme 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…

 

33 (the esoteric post)

yellow-arrival-sign-hiUsually i have a rough idea what i want to write about about when i sit down to blog. Metaphorically speaking. Practically of course i don’t need to do that because I am always sitting anyway. But I still insist on sitting down. Insist to myself that is. Sometimes you just have to.

Today i don’t know where this blog post will take me,  but i feel an inner urge to reach out. It must have to do with the decrease of my physical voice. Not only am i less intelligible but speaking also exhausts me more and more which entails my progressive schweigen. Schweigen is a wonderful german verb that has no translation into the english language. What it means is to intentionally stay quiet and refrain from talking. I am not fast enough, loud enough or strong enough to squeeze myself into most of the conversations that take place around me. (For the record : No one is forcing me out of the conversation. It’s just the way things are.) Also schweige ich. Silentium. More and more. But i refuse to go quiet completely.  Not out of anger. or frustration. Not because I have tremendously relevant or smart  things to say. Not because i think i am that important that i should be fucking heard. No.

What is zu guter Letzt important?  ALS or not! No one has uttered on their deathbed the famous last words … oh,  i wish i would have worked more... When it comes down to the realities of illness and death it is suddenly self-evident that all that matters in this life are our relationships with others. Have we touched other lives and have we been touched? Have we passed on what we were given? Have we loved? Have we been loved? Are we alone or do we feel connected?  Rosebud anyone? ….

So i want to connect. To noone else but you! I need to tell you something. It is so good to know you and if i don’t know you it will be good to get to know you. I am afraid i might not have showed you often and clearly enough in words and actions what you mean to me.   All of our lives I tried to emphasize my individuality but to whoever i talked to in the last year i could only feel closeness. We are so much more alike then we are different. We are all but sentient beings… changing beings… Formwandler. We get born. We live. We rejoice. We suffer. We die. We are a part of something larger that we can explore together. Tiny giants we are. With tiny giant hearts in our chests. Nothing much we can do but live with love and become aware. It is so weird. I had to become forty-six years old facing a terminal disease with a very long name to come to the point of acceptance. It is the paradox of choice. The less there is to choose the easier to make a choice. If you can’t choose anything anymore you have the possibility to get humble. Finally.  It has never been MY life in the first place. I just tried to make it mine. Deep acceptance. It is a feeling like softly sinking into the fabric of existence. Every moment still is new. I am not leaving. I am arriving. Life is grace.

 

32

angst-munchHeute schreibe ich seit langem mal wieder auf Deutsch. Anlass war zunächst ein lieber Besuch meines alten Freundes Jürgen, der als treuer Leser dieses Blogs sein Bedauern zum Ausdruck brachte, dass die Blogeinträge immer auf Englisch seien, was ihm nicht immer leicht fiele zu lesen.

Der Grund für den vorwiegenden Gebrauch der englischen Zunge war und ist die beglückende Tatsache, dass ich im Laufe meines Lebens Freunde aus der Welt gefunden habe. Zum Teil durch die Arbeit im internationalen Filmgeschäft, zum Teil auf Reisen, zum Teil,  weil Berlin nicht nur arm aber sexy sondern gottseidank wirklich multikulturell ist und es hoffentlich auch bleibt  und zu einem großen Teil eben auch durch Netzwerke von Selbsthilfegruppen für Süchtige, die mittlerweile die ganze Welt umspannen. Eine weitere schöne Ironie des Schicksals, dass die größte Krise meines Lebens, die Abhängigkeit von Drogen, zum größten Geschenk wurde,  indem ich aufgefangen und getragen wurde von anderen genesenden Süchtigen, von denen ich bis heute lernen darf. Ich habe sie getroffen in Berlin, Mumbai, Marseille, Paris, Glasgow, New York….. und an vielen anderen Orten.   Da schien Englisch einfach die beste Wahl für mein Blog. Außerdem ist es für mich als nicht Muttersprachler eine wunderbare Möglichkeit neben unmittelbaren Gefühl und Erleben von dem ich berichten möchte zu einer zweiten distanzierteren und reflektierenden Haltung durch den Gebrauch der Fremdsprache schlicht gezwungen zu sein.

Die Muttersprache hingegen eignet sich vielleicht gut für das, worüber ich heute schreiben möchte. Angst. Ein Wort so deutsch, dass der native speaker es einfach übernommen hat. Man schaue auf jüngere Schlagzeilen: Florida’s Hurricane Angst. OR Possible Brexit consequences producing king-size Angst

The word Angst has existed since the 8th century, from the Proto-Indo-European root *anghu-, “restraint” from which Old High German angust developed. It is pre-cognate with the Latin angustia, “tensity, tightness” and angor, “choking, clogging”; compare to the Ancient Greek ἄγχω (ankho) “strangle”.

Also, wenn ich nochmal ‘ne Ami-Punkband gründen würde, wofür zugegebenermaßen die Chancen aktuell eher schlecht stehen, der Name stünde felsenfest: Kindergarden Blitzkrieg.  Und das Debutalbum: Weltschmerzrucksack.  Wobei möglicherweise das letzte Rammstein Album bereits so heißt. Na ja,  ich schweife ab….

Denn ich wollte ja ehrlich über meine Ängste schreiben. Nicht die alltäglichen.,, nichtigen und wichtigen Ängste, durch die wir alle durchgehen dürfen. Nein meine Ängste der letzten Tage fühlen sich aus meiner bescheidenen Innenperspektive recht existenziell an. Irgendwie geht’s ums große Ganze und das ist eben auch das ganz Große.

The first cut is the deepest oder Good day sunshine.

Seit kurzem gehen meine Tage so los, dass nach einer nicht vollständig erholsamen Nacht, aufgrund meiner Unfähigkeit, mich selbst im Bett zu drehen, geschweige denn meine Atemmaske eigenständig abzunehmen oder justieren, mein Tag ausser Atem beginnt. Weil die Nacht über hat mir die vivo50 ja beim Atmen geholfen und jetzt muß mein lausig schwacher Körper wieder anlaufen. Ich taufe Dich auf den Namen Zwerg Fell. Dieses Gefühl der morgendlichen Atemlosigkeit, was sich glücklicherweise noch nicht wie Atemnot anfühlt erzeugt eine große Angst in mir. Unruhe. Gedanken rasen. Noch schneller atmen. Das meine Tage gezählt sind ist schon klar. Deine übrigens auch. Aber kann ich sie etwa schon an zwei Händen abzählen? Das stimmt natürlich nicht. Aber das flüstert mir  die Angst ins Ohr. Eine neue Qualität von Angst.  Man lernt nie aus. Und es gibt nicht viel zu tun, außer da hindurch zu gehen und zu warten. Der Tag wird kommen an dem ich die Maske nicht mehr absetze. Oder höchstens durch einen Schlauch austausche der in meinen Hals führen wird. Dann wird die Atemlosigkeit vorbei sein. Maschinen werden für mich Atemlosigkeit erleben dürfen. Die Ängste will ich aber bitte schön behalten. Das schönste an Ängsten ist diese unmittelbarste erlebbare Gewissheit,  am Leben zu sein. Electricity. Let it wash all over me. Und tröstend dann ein wenig später, wenn ich in die Dusche gefahren werde, die nächste Gewissheit, einen weiteren Tod erlebt haben zu dürfen. Tod und Verklärung. Angst und Erlösung.

DJ Food oder Take my breath away

Eine weitere Angst im Laufe des Tages ist die Angst, mich beim Essen zu verschlucken und einen Rohrkrepierer hinzulegen. Aber Spaß beiseite. Es gibt wohl wenig beschisseneneres, als Essen in der Luftröhre. Kennt jeder. Meine sich immer mehr vornehm zurückhaltende Schluckmuskulatur sorgt nur dafür, dass ich diese gefühlte Nahtoderfahrung inzwischen mehrfach täglich erleben darf. Ich sage “gefühlt”, denn “so leicht erstickt es sich nicht” , wurde mir nun schon wiederholt von professioneller Seite zur Beruhigung ins Ohr geflötet. Na ja.  Das beruhigt ja ungemein. Wobei es doch interessant ist, wie schnell man sich an eine neue Situation anpasst. Was vor einigen Wochen von mir noch als veritablen Verschlucker mit terminaler Dramatik bezeichnet worden wäre,  huste ich mittlerweile gelangweilt auf einem Rest-Lungenflügel ab und werde höchstens grün mit rosa Tupfern im Gesicht aber niemals blau. Mir wird gesagt, ich solle gut kauen und nicht sprechen beim Essen. Wäre vernünftig.  Bin aber 45 Jahre in die andere Richtung gefahre. Ein Brontosaurus ist kein D-Zug. So oder so ähnlich…

and in the end?

Und da gibt es noch so viel mehr Ängste. Die meisten davon in die Zukunft gerichtet. Werde ich es schaffen mit der Verlangsamung und Einschränkung der Kommunikation umzugehen?  Werden andere die Geduld aufbringen.?  Werde ich das tief verankerte Muster, Leistung und Sinn verknüpfen zu müssen überwinden können. Werde ich stark genug sein, um meine Mitmenschen nicht durch ständiges Gejammer zu tyrannisieren.? Werden meine Augen vielleicht auch nicht ausgespart.? Werde ich immer wieder Liebe in meinem Herzen finden?

Wenn ich das so formuliere, ist es klar, dass diese Ängste im Kern Fragen sind, die ich  mir heute nicht beantwortet kann. Also möchte ich andere Antworten geben lassen. Um mir selbst Mut und Hoffnung zuzuspreche. Gebete ohne Gott. Meditationen.

Die  erst Antwort schrieb mein geliebter Rilke an einen jungen Dichter im fernen 1908:

…… und ich möchte Sie, so gut ich es kann, bitten, lieber Herr, Geduld zu haben gegen alles Ungelöste in Ihrem Herzen und zu versuchen, die Fragen selbst liebzuhaben wie verschlossene Stuben und wie Bücher, die in einer sehr fremden Sprache geschrieben sind. Forschen Sie jetzt nicht nach den Antworten, die Ihnen nicht gegeben werden können, weil Sie sie nicht leben könnten. Und es handelt sich darum, alles zu leben. Leben Sie jetzt die Fragen. Vielleicht leben Sie dann allmählich, ohne es zu merken, eines fernen Tages in die Antwort hinein.

Die zweite Antwort kommt von eben jenem Jürgen, der mich gerade besucht  und nebenbei unwissentlich dazu veranlasst hat, mal wieder auf Deutsch zu bloggen. Ein Satz, den ich so von ihm kenne, ist mir wiederkehrenden Lebensweisheit für schwierige Momente geworden.

Denn was ist das Schlimmste, was passieren kann? Das ich meinen Willen nicht bekomme….

(worauf Schopenhauer mir als letzte Antwort zuflüstert …  und so ist wahres Glück auch nicht, zu bekommen, was man will, sondern zu wollen, was man bekommt.)