Tuesday, June 4, 2019
Growing up, I was always told Hell was a burning lake, a fiery pit, a bottomless maze of caves filled with demons and presided over by El Diablo himself who, when he wasn't busy writing rock lyrics or Young Adult novels, spent eternity presiding over the torture of souls who had passed from the mortal plane without enough marks in the good column. Anything bad you can think of - and boy did I ever think of it - it wasn't even one one hundredth as bad as what was actually happening to those poor suckers. Even Dante couldn't possibly describe the horrors and torments in their full nightmarish intensity (though maybe Clive Barker got closer). It wasn't necessarily under the earth, but down was the direction in which you went to get there. And once you were there, you weren't ever. Ever. coming out.
There's another narrative that says that Hell is actually here on Earth - that we've separated so far from God that we are experiencing that torment now, spiritually, without realizing it. That all the torments that we visit upon ourselves (and make no mistake, at this point all of human suffering is of humanity's own making) are not only the result of The Fall, but its wages as well - we don't have to wait for eternal punishment, it's already been brought to us by - well, us.
I have come to believe that Hell is actually not a place, but a time. And that time is 3:00 am.
3:00 am is where all of your worst fears and anxieties can climb right into your skull and shake you awake. It's when you come to believe with the full irresistible force of genuine epiphany, backed up by the immense weight of vast sheaves of admittedly biased but nonetheless very real evidence, that all is lost and it's your fault. You, and your family, and your home, and your finances, and your career, and your yard, and your relationships, and your reputation, and your future are all not only forfeit, but even of themselves evidence that you have set yourself up not for the success that you thought maybe you sometimes were enjoying, but for the inevitable fate of watching it all burn while your eyes are held open by the sheer refusal of sleep to visit you.
3:00 am is the dwelling of the specters. They take the forms and voices of all of those people you love. All of those whom you admire. All who trusted you because they Did Not Yet Know. At 3:00 am, they gather and look at you and shake their heads and whisper to each other "there is an example of what happens. We never thought it would come to this, but here it is. We tried to help but it was no good - it was probably hopeless all along. And the children, poor souls - we'll expect the same or worse from them, I suppose. What a pity. What a waste."
Like the more traditional versions, this Hell has no escape. Once you recognize that you have entered 3:00 am, you can't get out. Your eyes burn, but won't close. The tiny sounds of your home at night as it seems to slowly come down around you each snap and creak in your ears, threatening to be the harbingers of that final structural failure that Will Really Cost You. The peaceful sounds of the slumber of your partner seem like tiny taunts. Your neck and back urge you to change positions again and again in an effort to find the arrangement that does not introduce jagged, rusty spikes into them, but it's all in vain because your pillow was made by this man:
Which means it's not a pillow at all, but a loosely-packed sack of random foam pieces that came in a box with a printed Bible verse on a little slip of paper inside. At 3:00 am, you can hear this demon laughing at you for paying close to $40 to be tormented by this horrible excuse for bedding that makes you envy the hobo who gets to sleep on the ground with his head on his bindle.
Of Course. How could 3:00 am have it otherwise?
Now some might think that 3:00 am is escapable - just wait until it passes. It's temporal, and temporary, right? No, friends - when 3:00 am gets its hooks in you, it stays with you. You carry 3:00 am right the heck through 4:00, and into 5:00 (when it often pulls a Ramsay Bolton on you, letting you think it's allowed you to escape only to drag you back and flay the sleep right off of you 20 minutes later). You carry 3:00 am on your face, and in your stomach, and in your very soul through the whole rest of the next damn day. And tomorrow night? Have no doubt that 3:00 am will be ready for you with torments both fresh and familiar.
In the beginning, when all was darkness until suddenly there was light, when the Earth made it's first rotation that brought one side into the light of the sun and turned the other to the void of space, 3:00 am was born. When humanity first fed of the apple that was the marking of time in hours, minutes and seconds, it gained its name. When it was decided that The Clock would become our constant liturgy, its canonical hours governing the activities of the pious and the virtuous, it gained its power. It has always been there, will always be there, waiting for us. And we, the tortured and damned who know its cruel embrace so well, will be there too.
Wednesday, April 10, 2019
Even if you don’t know it, this letter is written to you. Whoever you are, and whether or not you are aware of it, you almost certainly are related to or acquainted with someone who is affected by a brain that is different from most. This is just a handful of numbers that don’t even begin to capture the whole picture, but they are a start.
- Every year, about 42.5 million American adults - nearly 1 in 5 - suffer from some mental illness, enduring conditions such as depression, bipolar disorder or schizophrenia.
- 9.4% of children aged 2-17 years have received an ADHD diagnosis.
- 7.4% of children aged 3-17 years have a diagnosed behavior problem.
- 7.1% of children aged 3-17 years have diagnosed anxiety.
- 3.2% of children aged 3-17 years have diagnosed depression.
- Each year, about 6,000 babies are born with Down syndrome, which is about 1 in every 700 babies born. Between 1979 and 2003, the number of babies born with Down syndrome increased by about 30%.
- Among adolescents ages 18-19, just under eight percent of females and just under three percent of males identify as homosexual or bisexual.
- An estimated 0.7 percent of youth ages 13 to 17, or 150,000 youth, identify as transgender in the United States.
- the CDC has increased its estimate of children with autism spectrum disorder to 1 in 59 children - over a 15% increase over the last two years.
Six degrees of Kevin Bacon has nothing on the likelihood that you are close to someone who is close to someone whose experience of being human differs from that of most people. Someone who is, in one or more ways, neuro-atypical.
I’d like to clarify a few terms first, at least in the way I’m using them. “Neuro-atypical” is not a euphemism or a code-word for “mentally ill,” “badly-behaved,” or just plain “fucked up.” It does tend to include and overlap with these categories (including the ones like the last that are nothing more than judgmental pigeonholes), but none of them really covers the gamut. There are lots of ways that people’s brains operate, contributing to temperaments, behaviors, cognitive patterns, and emotion states. The fact that only a narrow band of those are considered to correlate to success as it is typically defined doesn’t mean the others are strictly aberrant. A 7-foot neck makes for a lousy draft horse - but works pretty well if you’re a giraffe.
“Kids” means anyone who we are raising or have raised. Natural born, trans-generational, or adopted. Toddler through young adult and even adult. Living at home, on their own, or in a facility. For many of us, the idea of our children “leaving the nest” is far from a predictable proposition or a forgone conclusion. Even if and when they do forge out on their own, we may never be able to fully surrender our role as caretaker. Some of us may, indeed many of us will - but it won’t be on the standard timetable and won’t follow the usual script.
Our kids are not “broken,” or “problems.” They don’t need to be fixed, or corrected. They do need to be understood, reached, and connected to purpose so they can do what they are capable of - which is not less valuable than anyone else’s capability. Our aim is not to re-make them or force them to conform - it is to empower them and allow them to flourish. Everyone who has ever changed the world has done so not because they were a perfect fit for the world, but because the world did not fit them.
Here are a few things that we, as parents of these kids, need you to know. We are grateful for your support and your empathy, and most of all for your love and care. It is necessary to honor that with honesty and directness, so that we all can understand and value one another as we should.
Some of this will make you feel badly - angry, possibly hurt, maybe insulted on some level. We understand, and we are sorry - but these things are true, and we need you to understand.
We recognize that you have your own valid emotions including fears, doubts, and pain, and that you need and deserve to be able to discuss, share, vent, and process these feelings with someone. We cannot help you with this. Please turn to someone else in your support network. If you see a therapist yourself, that’s a great choice. If you have a close friend, a pastor/priest/rabbi/imam, or another family member, those are also excellent choices. Support groups exist too - but please don’t come to ours unless you check with us first.
We are not at a loss for doubts, fears, catastrophic predictions, second-guesses, or future-trips. We have spent huge parts of our lives wondering what we did or didn’t do, what we might’ve done differently, how we could/should have headed “this problem off early.” We constantly fight - hard - to keep these dragons at bay. Please do not feed them for us.
Please don’t tell us what you’ve heard works for other kids, typical or otherwise, and suggest we try that. We're not stubborn or unwilling to accept advice - many of us have the benefit of working with professionals who have devoted their careers to understanding and helping these kids. Every one of these kids is different, and needs different things. Paraphrasing Tolstoy, “typical people are all alike; every atypical person is atypical in their own way.” Standard approaches work well for most people because that is the definition of typical - true to type. Those things fail for the atypical for the same reason.
(Oh, and specifically for previous generations. Please do not remind us how we were raised, and how “we turned out okay,” suggesting that we do things the same way. We’ve tried it. It didn’t work. Those parents who say they now feel sympathy over what they put their own parents through? We are not those people. We wish our kids acted “just like we did.” You had it easy.)
By contrast, this will not be easy for you, us, or them. There will be setbacks and rough patches. Bad days and very bad days. Bad weeks. Months. Years even. How many? A few. A lot. We don’t know. How bad? a little bad, really bad, unimaginably bad? Yes, probably all of these. It will happen. At no point will all of it be in the past. We have to accept that, and so do you.
Okay, you’ve gotten through the hard part. Thank you. Take a deep breath. This part gets better.
Our kids are special. They are different. They bring things to the world that typical people don’t. They see things differently. They can offer us new perspectives and augment our understanding in ways we would otherwise miss. Not all of what they bring will be valuable to us (though it will to them), but if ever a world was changing fast enough to need a lot of difference and divergence of perspective, it’s now.
Listen to us when we tell you things. That’s all you have to do - we are not bringing you a problem to solve, we just need you to see where we are and what we and they are going through. You don’t have to shoulder our weights for us, just remind us that we have the strength and the wisdom to carry them - because we do, we just sometimes need reminding of it.
There will be victories. We invite you to celebrate them with us. Every time they surprise us with their talents, unique insights, or glimpses of beauty, join us in taking part in their joy. As much as these kids challenge us, their good moments shine all the brighter and warmer. There will be good days, and very good days, and amazing days. A few, a lot maybe - far between or in great wonderful streaks. They will always be in front of us. Trust us, we will notice these moments - when we tell you about them, share our happiness, and look forward to the next one in the times between.
The future will be a surprise. We can’t fully prepare for it, and certainly can’t predict it. But it will not be routine or boring. We are learning to be curious about that future, rather than fearful. Watch for it with us, and be ready for something none of us expects - not even them. We get the privilege of helping these kids usher in a new future. Share it with us - we welcome you.
We need you with us on this. We want you on our team. Many doors are open, even if some are closed. It’s a worthwhile journey, and one that few have the privilege of taking. Like any privilege, it is also a weight - but it’s not a burden. Join us as we learn to be grateful for the journey even as it changes us, changes them, and maybe changes the world.
Thursday, March 14, 2019
I believe strongly in the power of writing. Arranging one's thoughts to emerge through the pen or keyboard changes them, and causes the writer to actually examine them and, often in so doing, refine them. If you’re exceptionally fortunate, they do something for a reader as well.
The act of writing engages my inner critic. I compulsively backspace and re-type sentences, often multiple times. It takes me forever to get to a thought - much less through a thought - often to the point that it escapes into the ether as thoughts do before I get to a point. By now, this is already becoming self-evident.
Writing requires time, of which I have little, discipline, of which I have less, and a certain arrogance that people should know what is in your head (of which I have plenty, but it’s too busy fighting with the opposing self-doubt to be bothered to generate any motivation).
See? See why I don’t write?
There’s a deeper reason though. The writing I want to do would create a great deal of vulnerability. The writing I find most valuable from others is that which exposes the core of their humanness - that thing we all share, that ultimately connects us. To share our fears, pains, and failures alongside our victories and glittering moments of joy with others is to connect ourselves and our readers to a truth that is both inescapable and profoundly hopeful - and can kindle deep gratitude for the privilege of experiencing even the adversities we face in our lives.
I would like to write these kinds of things. Okay, but….
Truth is connection, and connection is truth. Connection involves others. My vulnerabilities are connected to those of others. To tell a meaningful truth makes the teller vulnerable, surely - but it also makes vulnerable those to whom the story connects. I don’t know how to tell my truth without exposing those I care about, and I haven’t got the right to do that without their permission - or maybe even with it.
Shrouding it in fiction depersonalizes it, and in some ways shields the writer from accountability. Attempts to preserve anonymity are paradoxically flawed - anyone to whom the truth would matter will probably figure out the person involved, and to anyone who wouldn’t figure it out even the name would be effectively anonymous.
Ultimately, I don’t write because I’m the king of excuses - and I know that. This is, in fact, basically one long excuse that I’ve written. And now my brief window of time is closing, and with it this piece of what is certainly not writing.
Because I do not write.