(The last post from my brother Liam Scheff is also posted here with his permission, although I have taken the liberty to add some photos of Liam from some of our adventures together. ~ RSB)
I’m lucky to count so many as friends and so few as enemies. Oh, I’ve made a few of those, mostly by standing up against abusers (they don’t like being confronted, called out or embarrassed), and they’ve come after me with sharpened teeth and rapier witlessness.
But that’s life.
And so is dying, which seems to be happening over here. Or, extreme daily illness.
I don’t want any wishes to get better; they’re only tiring at this point. I’ve been fighting this for a year on every front. I’m no pushover and have fought mightily, with energy that I no longer have, with health that has been diminished by the many months….
My body is highly resistant to losing weight, so even for eating little, I only look a little thinner; I’m not suffering any infections or colds; my diet is too clean and pure to feed anything ugly.
What happened is in my brain. It happened close to a year ago, during prolonged, painful, invasive dentistry. (Don’t send me your dentist’s information, I don’t need it. I don’t have metal or mercury or any other thing in my teeth or system). What I have is something that no one can seem to fix; not even me. No matter what I do, or try, or wish, or pray, or eat, or …
I’ve kept myself alive by forcing my body to walk a mile or two or three daily, even at my worst, even when I had to use a cane because my left side was giving up. I managed to force that, or train that, or .. something…into a kind of responsive state. But my ears don’t respond the same way. And it’s there, deep in my skull, vibrating the calcium holding in the thick, mushy tissue, that something is broken.
Something broke, something in my brain, my cerebellum, my hearing center. I’m not the only one in the world with this problem. Many people have “tinnitus.” A noise that they can hear if they really listen for it. But that’s not what I have when I lay down at night.
I have an electric sander working the inside of my skull; I have a hornets nest somewhere inside and behind my left ear and a small siren in my right. Night is most often much worse than day, and requires such a heaping handful of pills to try to convince the central nervous system to ignore it….well, more on that in a moment.
I’ve had one very belligerent now ex-facebook friend laugh in my digital face about what a pussy I must be to allow tinnitus to bother me. But tinnitus isn’t a word that means “a little annoying noise that you can tune out.” It’s a catch-all word, like “autism,” or “brain damage,” or “eccentric” that can mean so many things, from the benignly or vaguely annoying to the catastrophically unforgiving and life-threatening.
The one I have lives in the latter category, and has since the beginning. We’ve tried every approach; noise makers, pitch-matchers, the most expensive device on the market for the problem – the “Desyncra,” which put me in such a state of pain I was teetering on the verge of shock, a kind of pain noise coma that lasted for four or five hours. I’ve tried them all.
Please don’t post your favorite vitamin, or do, but I won’t read it, because I’ve already taken all of them, had every bit of blood tested, and had my head and neck scanned on multiple occasions.
Because of the problem, I’ve been on medications that suppress my entire nervous system in order that I may simulate some sort of “sleep” at night. But doing this leaves one – you guessed it – morosely depressed and deeply nauseas for much of the day; and the herbs, tinctures, powders and foods I always took to be in good spirits, strong and so, so sturdy – well – must be taken with great care, as they no longer serve easily or well. They can all make me quite ill. They must come at later hours, after a long, long period of pushing water and ginger tea through my system so I don’t have a day of 13 hour punishing nausea for having eaten the wrong thing at the wrong time.
So, people die. And I can feel it coming.
It’s sad. But we all die, which is sad, which makes life both sad and an adventure. I didn’t meant to die at Edward Schiller’s age of death – 46 – but next month, I’ll have reached it, and perhaps I’ll have this, among other things, in common with this philosopher of the age of Goethe and Voltaire whom I admire. If not, I’ll have to be satisfied with being pretty close…if not making it all the way. Or, my all the way was “almost 46.”
It is sad. Suffering is sad. It’s been a year of suffering. I’ve been surrounded by love. I’d be long gone if not for the love of my tribe, my closest friends and those who are the family of my heart and soul.
You’re going to have to miss me, because I’m not going to be around for much longer. I’ve already been missing you, and life, for a year. I’ve missed friends, activities, life, me, the me I always thought was the eternal me – I’ve missed that guy, who could bounce back from anything and go on with another project, a flight of fancy, a dive into the depths of another untapped or curiously verboten topic…to try to find what wriggled under the stones, what swan in the depths beneath the glistening, holographic surface.
I’ve left two books: “Official Stories,” of which I am deeply proud and represents the best of me operating at the peak of my abilities, and “The Truth About Love,” which makes me blush for being so saucy. But maybe it has some redeeming qualities for telling a few well-known…well…truths.
I’ve left films, video clips, hundreds of essays and articles and hours of radio. I’ve left a play, which I hope my writing partner produces soon.
I’ve left a legacy of swearing on the Internet, calling out bad actions by large companies, kicking sacred cows, hard, and asking what it’s really all about.
I suppose my work will always veer between enchanting, entertaining, offensive and…how should I put it? I’m not a contrarian for its own sake. I just want to know what’s beneath the easy answers that the world came to us, pre-packaged and sold in. I’ve argued too many things to be called any one thing, I’ve lost my temper, but often kept it, and been serious, but more often mirthful and cheeky.
It can be very offensive when you’re taking something seriously (or as sacred) and someone comes along and makes fun of it for making no sense. (I understand.) I hope it’s all taken in good fun at this point. How else can anything be taken? The society is in a fervent collapse cycle that will have a life of its own and keep all of you hopping…I’m sure.
But time forgets almost everyone, and I don’t have any great expectation to be remembered by the world when the Internet crumbles; though I hope “Official Stories” sticks around for a while and helps people, still young enough in mind to think openly, to question narratives, and to never easily settle on anything complex as being absolutely figured out all the way, in the over-simplified, often illogical, officially peddled versions.
And….what else can I say for now?
We’ll see how long I remain. I won’t be posting, I won’t be noisy. I won’t be answering messages – I’m sorry. Unless we’re very close personal friends and you are already in the know of the secret ways to reach me, please simply let me say… thank you for this strange adventure.
Facebook is certainly a ghetto in space, but sometimes it was our ghetto, and we had fun with its mock tribalism, letting us find each other in a world both too populated and too stripped of meaning and identity to mean anything when we meet neighbors who shy away from sharing their lives with us – because everyone in America is a stranger; everyone is suspicious and jealous and possessive – because that’s our instruction. It’s in our manual. It’s in our religion and our government and our commerce. And that won’t change, and the system, which is rotten and rotting ever faster will collapse and stutter and stagger and ultimately fall apart; as Yeats said and many have quoted: “Things fall apart.”
I once said to a friend: “Everything put together falls apart.” She was in a disintegrating marriage with a highly abusive spouse. She’d held it together by swallowing the insults and absorbing the punches. I simply meant that you can’t manage a system of chaos by ignoring the inherent flaws. You have to face them.
The expression itself I’d probably heard somewhere, but it meant something to me: everything which we, by artifice, trick or force … weld or adhese together… will find its own way to come undone, and find a natural resting place, or place of sustainable activity. So it goes of life itself, which bursts into being, runs like the wind in fingers and vespers of air, which finds a sturdy pace in middle years, and slows in old…
Unless something breaks. Sometimes one thing can break; a cornerstone; the welding at the weight-bearing juncture; the smallest cog in the finest watch without which the larger cannot communicate…and the machine no longer functions. The building leans and slowly, every so slowly topples. The watch no longer keeps time, a lag appears and grows. The soil beneath the dam erodes; water leaks through. Patches are put on, but in time, despite the hopes of all, the dam gives way to the ever-pressing pressure of water. And towns are flooded, lives are ruined.
My ears have long been ready to break. Hyperacousis and hypersensitivity – small noises sounding loud and soft noises at a distance heard with unbelievable, near superhuman clarity. I have long had this problem; I kept it at bay with earplugs. But dentistry, the violence to the nerves, moved the noise to the interior. It doesn’t pay to be superhuman. It eventually kills you. The very sensitive know this well.
What I Really Want…Is A Party
I hesitate to write this and to post it. Novels, or chapters of novels, write themselves in my unsteady head, beleaguered and battered by pharmaceutical depressants; but in moments, the prow comes up from under the waves, and my nature asserts itself: the story-teller, the muse, the teller of uncomfortable, delightful, disturbing, but liberating…often funny truths… and the chapters write themselves in my head. Or, they sketch themselves.
But I no longer have what I once never lacked: the instantaneous available energy to transfer from thought to written or spoken word. It’s gone, mostly. 95% gone.
So, just this tear-soaked little note in one of those small moments. A window which is … I can feel … closing.
If I could, I’d have a party and invite all my friends from all over the world. And we’d laugh and drink and be very merry; and afterward, some hours but not more than a half day, I’d drink my cup of hemlock and end all pain and suffering. If we were an honorable society, we’d allow people to do this. There are painless ways to go. Breathing helium or nitrogen gas – painless – and they’ll allow you to leave. But you can’t do it. It’s illegal. The government owns your birth, life and your death.
It’s galling, really, because I’d truly like to have my party with all my friends.
Fucking bastard government.
It’s okay to die.
It’s okay to live, while you can.
Friends And Friendship
Remember to live. Don’t be a cog in the machine, goddamn it. Goddamn the machine. Make sure to challenge the perceptions; make sure to breathe deeply. Make sure to tell your loved ones that you love them. Easy to say, not impossible to do.
But that said, I’ve lost a couple friends during this tumult; one was a newer and one an older friend. Dealing with a dying person is hard, but one seemed irritated that I didn’t ask after their problems enough and was, in essence, “self-centered in my focus on my constant and unbearable suffering….”
People have a hard time dealing with death.
The other, well. I lost a friend, an old friend, over a cat. He was coming to visit me from the East Coast, he got to Las Vegas, his cell phone texted him that is 19 year old cat was dying – and he turned around to be with his cat, which was euthanized.
I couldn’t believe it. I’ve been so sick…the days so nauseous and soaked with tears, I just couldn’t see my way through it. It made me sad, and mad, and I implored him not to do it; and I wasn’t very nice about it after a while, and he wasn’t either. One wants to feel more important, after all, than a cat.
But, I’m not a pet-owner. He told me that animal souls and human souls are no different. I pointed out that he ground up a lot of animal souls to feed to his animal. He didn’t respond. He did ask if I couldn’t understand the attachment to a companion of 19 years. I suppose I feel more attachment to people than animals and we somehow parted ways, each with his own version of events. It made me sad. He was an old friend and knew me when, to us, the world was still young and we believed in the possibilities of changing it to “a better world.”
Oh well. You never stop caring about what has been, and I still feel attached to my old friend.
I also have made and strengthened friendships during this period; to those who’ve walked this path daily and weekly with me, who’ve grown with me in understanding the reality…the unavoidable passage…you have my deepest warmest loving gratitude for not leaving me alone with the presence of pain and specter of death. It takes great courage to look at death and accept it as a reality. Most prefer the opposite, which is too bad, but maybe something we should all think about.
Never Give Up!
People respond to the news of the demise of a person in so many ways – with terror, sympathy, empathy, pain – and all of that hope. That endless out-pouring of hope – mostly useless hope – because most of the time, people get better, whatever your wishes. But sometimes they don’t. It’s been the surprise of my life. I’ve always gotten better from everything, even things people believed you couldn’t get better from, or, at least not without medication and doctors. But I did.
It’s beyond me that I can’t will this into being, force it, muscle it, shape it into something new and healed and eventually, something, like everything else I’ve ever injured, that I eventually forgot was every hurt.
But I can’t. Or, it hasn’t been so. Despite…everything. All the advice in the world. All the assurances that things will get better if… and you can fill in a thousand answers. And I feel a call to part. To leave. To let it go.
No, no! You cry. Never give up! Never ever! You mustn’t! We need you!
I’ve heard it from many, on many occasions.
But people die. I mean, people, on a daily basis, do die, don’t they? Every second, some number of people die, perish, evacuate these shells, shuffle off the suit, shake the mortal coil and fly. So, at some point, it is quite natural to leave. And maybe we know when it is, but we don’t… we don’t live in a culture that cares to let us acknowledge that it is, indeed, okay to part this world.
We must not be very good at accepting this reality.
Maybe we should get better at it? Maybe we should make it less painful and less stressful to part, if parting is truly and deeply wanted? There are ways to make it so…but we don’t allow them.
In a crumbling world, we might want to be better acquainted with the methods of a peaceful death.
What happens after death? It’s a question that’s been on my mind. I imagine the ego, the idea of ‘self’ versus ‘other’ is simply evaporated. I imagine – and have felt this way in certain states along the way – that the world recedes as though it were an ant farm, or a terrarium behind glass; a globe in view but not in reach; and the problems, the concerns, the biases, name-calling, fights and superstitions, hopes, dreams, wars and madness…all that ever is and was on this planet of unfair and ungentle chaos – is cooled in the blackness of space among the luminescent spheres of glowing plasma….
And then, beyond that? What is there?
What celestial machinery awaits our discovery?
I don’t think I have a very long time here.
I love many of you and dearly.
From my early days to today. I care about friends who’ve stayed close, who’ve been my family and loved me with so much fortitude that it kept me here. Even when I was faltering. I care still for those who’ve lost touch, but also friends with whom I’ve had fallings-out, my cat friend, and the other, and I hope that there are ways in the eternal scriptures written by unknown and busy quills, that we all find our way back to each other at some point, and back to understanding.
If you hear of my departure, please celebrate my work. If you hear of my departure, please share with a friend that you are so pleased to have them, because those conversations shared late at night, or in the quiet moment in an afternoon walk, or in bustling transit to and from “important events” – those are the moments. This is the marrow of living. The space between what’s advertised…the sly, mirthful smiles, the sly recognition of the self-same humanity in another….what is life but the poetry of a moment unadorned by description, living itself out naturally, rolling out of its own desire to simply be?
These have been the moments that have soaked my cheeks with tears. But they must be eternal, for they happen to for all of us, and all of us that were, and all yet to come. Maybe there is no single “I,” maybe we’re all the same soul having multiple experiences…. Maybe. Something like that.
I hesitate, again, to publish this, because then comes the flood; advice, well-wish, remorse, sadness, pleading, help offered if… and so on. And I can’t answer you. I’m too busy surviving minutes and hours.