What’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.