Susan's Blog

Tuesday, November 27, 2018

The Insidious and Omnipresent Infantilization of Disabled Adults

Here is my latest post for the Psychology Today blog, about how common it is to infantilize people with disabilities; how I recognized this attitude in myself. An experience with MUSE was, as it so often is, my muse for the piece.

Monday, November 5, 2018

CNN’s Article on Nat and Voting

CNN just published a print story of the voting booklet that I made for Nat for this election. I tried to figure out just what he would need to understand, in order to vote like a responsible citizen. I did guide him to consider being a Democrat, the same as I do for my other two sons, because it is my responsibility as their mother to make sure the actions they take have only a positive impact on their lives. But I have created a more general, more neutral format of the booklet that I will share here and hopefully others with developmental and cognitive disabilities will use it and be able to vote:  Voting-Public Version
Also, here is a nonpartisan guide to teaching voting, put out by 3L Place, a service provider in Massachusetts that is all cutting-edge, holistic, intellectually stimulating in its approach to people with developmental disabilities.
Use, enjoy, spread the word, and vote!

Monday, October 29, 2018

Vote Blue, Your Country’s Lifeblood is At Stake

On this ugly rainy day I find my mind turning to the potentially ugly future. Over the years that I’ve written in my blog I have made no secret of the fact that I’m both Jewish and a Liberal Democrat. I am in mourning for the Jews that were shot yesterday in Pittsburgh. Two of them were developmentally disabled. The others were also innocent human beings.

I live in Massachusetts, I believe in publicly funded social programs like Welfare, supports for the disabled, elderly, poor, and addicted. I believe in funding public education and special education and bilingual education. I believe in the spectrum of human gender, of human neurology, of race, of the human condition. I believe that the climate is shifting to very dangerous patterns and that it is because of our abuse of the earth, its environment, and the atmosphere. I believe in the freedom of religion and the freedom from religion. I believe in laws that restrict capital enterprise because the wealthy and competitive need limits. I believe in free press that does due journalistic diligence. They must courageously present fact. (Like NPR, who always has the other side on to express their opinion and viewpoint.) I believe in tougher gun laws and an active campaign to get rid of guns. I believe in the rights of all people to vote and live their lives safely and happily. No one in this abundant earth should be hungry and if they are, the other countries should be aiding them. I’m an FDR Liberal, a JFK Liberal. I, too, Have a Dream, and that is a country that is compassionate and helpful to others.

Got it? Here’s what else: I believe in history. If you count yourself as an educated person, you have to look at history to understand that the American government we are living with right now is a dangerous, pre-fascist one. The hallmarks of dictatorship are all there in the Trump and GOP-led Congress. Separating — literally — groups by their skin color and religious beliefs or nation, and then calling them names like “rapists,” “animals,” people from “shithole countries,” “criminals,” and  “globalists” — this is engaging in the time-dishonored tradition of dictators. Trump encourages violence against different groups, again and again.  That is how Holocausts begin.  It can happen here. Make no mistake. Right now, it is the weak and careless Republicans in Congress who are not defending our country’s philosophy of Life, “Liberty, and the Pursuit of Happiness, Justice and Liberty for All. E Pluribus Unum. This current administration has done the opposite and believes the opposite of everything I believe in, that I mentioned above, in my second paragraph.

In the name of my sons, the future generations, I am voting for a healthier planet and the lawmakers who will stand for that. I am voting for a Congress that protects voting rights and does not support far right Supreme Court justices who trash them. I am voting for a Congress that supports Medicaid and Social Security programs because those give my autistic son an adult life, outside of my home. This GOP Congress wants to slash those programs to pay for a tax cut they gave to the wealthiest in the country. I am voting for a Congress that supports compassion, fairness, a social contract. Protection of the most vulnerable. The Welfare State. The MLK Dream.

Of course you can disagree. If you can civilly point out places where I’m wrong, go for it. I’ll read it. But if you’re nasty, I won’t print it. (My blog, my decisions.) If you’re offended, don’t read me. Trump’s is a Hitlerian-style regime. In the memory of the Tree of Life Eight, the Orlando nightclub victims, the Newtown children, the Parkland students, and the all the rest, I dedicate my heart, passion, and resources to the Democrats.

 

Thursday, October 25, 2018

Autumn Chill

Fall is the empty nest time of year; even the trees must deal with the fact of their seeds dropping off to start new lives. And I am an old mother, dealing with my children’s departure for years. My son Nat has lived away from us for eleven years. But this particular autumn I find myself unable to shake my sadness, the feeling that there has been a permanent shift, and that I’m not ready for it.

Like many families, Nat, who is my oldest moved into a residential school at 17. Unlike many families, this was a school for students with severe autism.  The move out of the home is so dreaded by most autism families that it even has a special term: going residential. For right or wrong, sending your autistic kid away feels like you failed him somehow.

For years I fought this feeling. I told myself that Nat “had to go.” He was out of control. He acted wild, like a stranger, he reminded me of the Warner Brothers Tasmanian Devil, a whirlwind of scary biting and terror. I’m sorry, but this is how I remember it when I think back. That, and I wonder if his brothers weathered it okay, and I cling to the memory of how easily he left us, how quickly he was absorbed into that group home community.  “So he must have needed a different environment,” people reason. They believe this, it is easier for them to decide that because Nat’s difficult behavior subsided, it means that he found peace in the strict schedule of the residence, comfort in the consistency and similarity of school/home routines.

But now that Nat is an adult, I experience him differently. He has learned, over time, to stretch out the moments between the spark and his response. There is space between us now, where I can now see how he is feeling, and not simply that he is feeling.  He has developed a wisdom and the strength to pull back and let me see him. He has learned how to be vulnerable and dwell in that particular discomfort that used to cause him to erupt.  When did this happen? Why did this happen?

I look back and I see the memories of my time with Nat, and the conclusions I made back then. One particular memory that I make myself look at is the night I cried out, “If you keep hitting people you won’t be able to live here.” To which (I think) he answered, “you be good.” Even if he did not answer that way, what I remember is that he took it in. It didn’t change anything; he went on lashing out at us without warning, until finally my husband and I decided we needed him to move out.

Was that the moment when he suddenly realized he was not a part of me, that Mommy was not Forever, and that he might find himself alone?  Over the years it has broken my heart to think, yes, maybe. I did the worst thing a mother can do: I threatened abandonment.

It is not just with Nat. I remember when my middle son, Max, wanted to sit on my lap, which was occupied by his infant baby brother Ben. And I told him, “You have to be a big boy now.”  Snap.

I hate the cruelty there, those moments of being only human, because I believe with all my heart that my children deserve better than that.

But lately I wonder. Do they also need to see the grotesquely flawed parent? Is it possible that children must somehow experience that break with their parent, in order to separate later in life? Max is now 26 and living in New York, working in the film industry. He is and always was a peaceful, accepting soul. When he’s around I feel a sense of comfort and easy joy. So it must be that his separation was healthy.

So there are times when I really worry that Nat’s separation was born of that horrible threat I made. Or maybe it occurred when he went residential. In those dark times, like during the rapidly shortening autumn days, I would see Nat’s independence as a sad thing, something he doesn’t quite understand, something that might actually feel like a punishment.

And indeed, he anxiously insists on staying at our home on the weekends, even now that he’s living with two wonderful young women who love him like a brother. I have no doubt that he adores Elaine and Miyabe right back; and yet he must stay with us on the weekends.

I’m leaving out something really important here. Two years ago he came back home to live with us for nine months. Nine months — the time of complete human gestation. You are born after nine months.  In coming back home to live, did he experience some kind of rebirth? Some kind of very old healing? He certainly healed on a physical level — the reason we took him home was that he showed up one weekend with mysteriously broken ribs. I took him back and got to know him all over again. And he me.

He’s settled happily with Elaine and Miyabe. But there is still that insistence to come home on the weekends. And at the same time, though, there is this new breath he takes when he is becoming upset, a short, flappy moment where he is able to look at me and wait for me to understand what’s wrong. His faith in me makes me calm and confident and then I actually do understand. And then we work it out.

Last week, when we were creating his calendar with Elaine and Miyabe, we floated it out to him that he was not going to sleep at home Saturday night. He listened intently. I then offered that the week after he would sleep at home the entire weekend. “Okay,” he said.

“Wow, he was so chill,” exclaimed Miyabe in that Millennial way of hers. He certainly was. And I’m wondering about new Chill Nat. Or is it old Chill Nat, who went residential calmly — successfully, at the age of 17? Maybe that really was good for him. Maybe my stupid moment of threatening him was not the fateful moment of separation. Did his time away teach him that taking space was really okay, not a punishment? For in doing so I believe he learned to take a moment — a chill moment — and work it out with us. He learned that he can come back anytime, and so he doesn’t have to.

And a new possibility occurs to me, a phoenix risen from the ashes of all my doubt. The smokey plume of hope, that this empty nest of mine is never completely empty. He can always come home again. Because now Nat and I trust each other.

 

 

 

 

 

Wednesday, September 5, 2018

Inclusion and our Social Contract

“As soon as any man says of the affairs of the State “What does it matter to me?” the State may be given up for lost.”
Jean-Jacques Rousseau, The Social Contract
“There is nothing better than the encouragement of a good friend.”

My children have all crossed the threshold into adulthood. My youngest son Ben is settling deeply into a happy life as an art student in Savannah. He is happier than I have ever seen him, living according to his goals and talents. His art is a wild and wonderful combination of wisdom and wit way beyond his twenty years. My middle son Max is a First Assistant Cameraman living in Brooklyn. He has a beautiful life rich in friends, interesting gigs like feature films and fashion shoots, and the freedom to explore his fullest potential.

My oldest son Nat has, at long last, arrived at his most exquisite opportunity: Full Inclusion in society. Being able to work, play, rest, grow. As a man with autism, this takes a special combintion of drive, patience, and support. Nat has the first two. The support he needs comes from his family and his community. And our government. This support enables his participation in a full life.

You cannot have a full life unless you are included among others in the world. You cannot be included if you do not have the tools to allow you to function among others.

People with disabilities need tools to manage in society. Ramps, canes, service dogs, talking crosswalk signals are some. Other tools are support staff to help someone who has social and sensory, and maybe intellectual impairments navigate complicated systems, be they social, geographical, financial, or otherwise.

These supports are not cheap. But they are necessary or you have huge populations who cannot live safely, work, or learn effectively. They wind up on the street, in expensive dead-end institutions, or in prison. Or sitting in their parents’ homes staring at a television set until their parents are too old to take care of them. Then, it’s onto some state-funded group home, if they’re lucky.

A compassionate and supportive society and government are not new concepts. Jean Jacques Rousseau coined the term “The Social Contract” in the mid-eighteenth century. According to the Stanford Encyclopedia of Philosophy, “The concern that dominates Rousseau’s work is to find a way of preserving human freedom in a world where human beings are increasingly dependent on one another for the satisfaction of their needs.”

Our country was founded on this Enlightenment philosophy among others. Our government grew out of finding a balance between a government large enough to protect vulnerable individuals, and a government small enough to protect individualism. John Adams, Thomas Jefferson, Benjamin Franklin — all of them were steeped in it.

Even though our government began with these beautiful, powerful, humane ideals, we have always needed to work to maintain them. We need accurate information, we need to vote, we need to push back on those who would take these away.

The Current Political Climate Threatens Inclusion

People with disabilities and their loved ones need to work even harder to access the fullness of life. That is a difficult reality, but it is a fact. For example, if you find there are endless waiting lists for your adult developmentally disabled loved one, you must press for change at the state level. Or, for example, access to healthcare, regardless of pre-existing conditions, is necessary for the health of people with mental, physical, intellectual, social, sensory, or behavioral challenges. A least restrictive environment during ones school years, one that is free and appropriately supported, is another tool people with disabilities need.

But to have these supports, you must make the effort with your lawmakers, even though it is hard. Find out if your senators and representatives support Medicaid and advocate if they don’t. Make appointments to visit their offices in your state house. If you can’t do that, write a letter, send an email, make a phone call. Get your fellow families to do the same. If you throw up your hands and let people tell you that there’s not enough money for this, for healthcare, for public special education, for job coaches, for well-trained housing staff, you must point out to them that we have a gigantic deficit not because of our public support programs and entitlements but because the current President and Republican-controlled Congress voted last fall for tax cuts for the wealthiest corporations in the country. Not tax cuts for the middle class or the working poor. According to the Newsweek article linked to above, “a new analysis of all Fortune 500 companies found only 4.3 percent of workers will receive a one-time bonus or wage increase tied to the business tax cuts, while businesses received nine times more in cuts than what they passed on to their workers,” Think about that for a moment, and then decide if this is fair. You might get a wage increase, a bonus, or a tax rebate this coming year. But what do the wealthiest get? Nine times more.

If politicians or fellow citizens tell you, “we have to tighten our belts, and slim down our government agencies,” they are overlooking the fact that the wealthiest, the corporations, and indeed many of these politicians themselves, have done no such thing. No, they have received huge increases in their income. They have bloated the military budget beyond good sense. That’s where the money has gone. Not to food stamps or healthcare for the poor and disabled.

Do not let anyone make you feel guilty for advocating for supports for your developmentally disabled loved one. Don’t let your town governments blame special education for being so expensive; ask what they spend on sports and all the other academic and extracurricular programs that special needs students often do not participate in. My own town used to do this, and it was common statewide to blame the out-of-district placements like my son Nat’s, when the reality was, my school system refused to create an appropriately structured classroom for Nat. If they’d hired just one specially trained autism teacher for $50,000 and set aside a small room for perhaps a class of only 4 or 5 as challenging as Nat, they would still have spent 25% of what they would spend if each of those students were placed in private autism schools like Nat’s.

While I’m glad that my school system did send Nat to a great private autism school, I lament the fact that he was not included in his town until he joined Special Olympics, until our town strengthened their Parks and Rec program to offer special programs for guys like Nat that were — once again, con brio — funded with public money. Now he has friends but during the school years he had very few. One guy at age 15, another one at 17. Now, dozens. (You will see why further down, below.)

It is public program supports that allow guys like Nat to live as fully and independently as possible — not on the street, not in a psychiatric facility, not in prison. He can put to use his publicly funded very comprehensive education. He can now work, buy things, and generally participate in the economic health of our economy.  He can play sports and compete statewide, he can be the frontman in his rock band. He can volunteer for Meals on Wheels during his week.

But we need the funding and the advocacy to make it happen. And there is no other answer, other than the simple but difficult one: we need to believe in public programs, we need never to stagnate, we need to make sure that in taking care of our more vulnerable citizens, we are open-minded and creative.

What’s more, we need to demand that our country pays its fair share towards this end. It’s the new Social Contract, where society provides the tools for people with disabilities to live out in the light. It’s not a handout. It’s a hand upward, a lifting-towards life. A full life, liberty, and the pursuit of happiness.

Tuesday, July 24, 2018

Hodor is My Hero

Here is my latest Psychology Today column, a mother’s take on Game of Thrones‘ portrayal of disability and why Hodor is my hero.

Friday, July 13, 2018

He’s with the band

They showed up one evening, at my friend Eswar’s house. He was hosting a bunch of musicians that night, an impromptu concert. He himself was going to play the violin with his son. That in in itself was a good enough reason for us to be there, to see Sri — whom we’d known since he was little, who had befriended Nat because Nat tickled him – play the violin with his dad. Sri has autism, like Nat. This musical ability blew my mind.

I didn’t even know the two women – clearly they were the teachers — were together. Elaine, with a violin tucked under her chin. I knew that she had been giving Sri lessons. The other young woman there also had long black hair, playing on the guitar. Later I learned her name was Miyabe. She seemed to always have a smile on her face. Even so, I didn’t approach her, I felt shy, in awe. They were so cool. All of them, in that band kind of way. But I knew I would need to talk to Elaine because of what she’d done: she’d taught most of the other musicians, all of them with disabilities that were fairly profound in one way or another, how to make real music. And I wanted to ask if Nat could maybe learn an instrument.

To me the other students were like gods because they were in a band, actually playing instruments. All having so much fun. How did this happen for all of them? I guessed that this is what you could have when you were higher-functioning autistic. You could have an awareness that music comes from somewhere, and that you could actually make it happen with your own hands.

Maybe Nat knew that. But I didn’t think he cared. That’s always been one of the biggest problems of his autism: he didn’t seem to realize that caring, taking an interest, making that effort to understand something or someone, would actually benefit him. As a toddler the behaviorist taught him how to put a doll in a car and push the car around making car noises. Vroom, vroom. But she could not teach him how to enjoy it. He’d dutifully push the car and then stop and wait for the next command.

Maybe he does care but doesn’t know how to show it. Maybe he doesn’t care and that’s okay. I guess what I should say is, I care. I want him to be able to interact with other people and not be alone so much.

Nat sat through the concert, and seemed very interested in all that was happening. And when it was over he stood up with the musicians while the parents were taking pictures, as if he were one of them. And just like that, he was. When I talked to Elaine it was as if she already assumed he was going to be playing with them; I didn’t even really have to ask. I am used to people letting Nat in, tolerating him. I am used to seeing him included, but always as the least able participant. So what, right? Who’s comparing? It’s not a competition. Blah blah blah.

I never in a million years imagined that there would be people — other than family — who would want him for what he himself could do. Who saw his particular contribution, his unique self, as being something they actually needed and wanted.

It turned out that Nat could sing. I think that Elaine and Miyabe were almost as happy as I was about it. I say almost because I don’t actually know if it’s possible for anyone to love Nat more than I do, and so how could anyone else be as thrilled about this accomplishment as I was? And yet with Elaine and Miyabe — and soon I realized Brett, the drum teacher was just like them – I wonder. Because the more I saw them with Nat, the more I had this feeling that they were taking a kind of “ownership” of Nat.

Not that any human being can own another. What I mean is they felt a certain proprietary thing for Nat. Not protective. Not patronizing. But a pride and a desire to be with him and bask in his Nat-ness. As equals. Aside from Ned, the only other person who has projected this sense of ownership of Nat is Laura, my sister, who actually attended his birth.

Suddenly people who were not his family and who were not being paid to do so wanted to be with Nat. Not because it was their job. Nope. Just to hang. Brett came a few times for walks with him to get JP Licks ice cream. Miyabe would ask if she could hang out with him, go running around the pond with him. She and Elaine took him to a concert one afternoon and I did not even realize it was happening until later. He came back with a tee shirt and later I saw pics of him as part of the group. It still amazed me to see it but at that point Elaine, Miyabe, Brett, and Max, (another of the instructors) all just took it in their stride. They were already used to hanging out with other students (who are also young adults, like Sri and Stefano, the lead guitarist). They taught these guys but they also had fun with them. The MUSE teachers – Brett, Max, Elaine, and Miyabe, were in charge of the students’ safety, but the only time they were paid was when they were instructing the guys. I wanted them to understand how precious this new existence was for Nat, for me. I wanted them to know what they meant to me. I wondered about paying them. But they shrugged that off. I suspected that it was somehow completely not it. That to accept my money would be insulting to them and to Nat. It would ruin it. It would define their relationship in the wrong way.

Why do I keep mentioning that it wasn’t a job, that no one was pay? Because in our society money defines who and what things are. Money shows appreciation for someone doing a job. So without money, what was the relationship? I was afraid to ask, as if to name it would change it.

So really, what was this kind of thing the four teachers were doing — and now also bringing along spouses and other friends? All of them in their twenties, some disabled musicians, some not. Sometimes parents like Ned and me came along. We were welcome, too, even though we are twice their age. And when we do hang out with them, I feel light and free, and full of potential myself. I still sometimes ask myself why does this happen? Why does this arrangement — MUSE as a group for whom only music and friendship and fun matter — why does it work so well? How can there be so many boundaries crossed? Maybe that’s not even the way to look at it; it’s not that MUSE crosses boundaries. It’s that the MUSE does not see obstacles to friendships.

It’s complicated, and yet it’s the most natural thing I’ve ever encountered.

Thursday, June 14, 2018

Don’t Call My Autistic Son “Buddy”

Don’t Call My Autistic Son “Buddy.”

This is the subject of my latest Psychology Today column, which you can find here.

Tuesday, June 12, 2018

Life will, uh, find a way

I had a bike accident a few days ago. I got “doored.” I had just completed a 19 mile ride, my usual summer route, when I decided to finish up riding on a road near my house, parallel to the park I usually ride in. I don’t know what made me change up the route, which took me next to a whole lane of parked cars; maybe just the desire to do something a tiny bit different from the park path.

The driver’s side door of the Mercedes swung out, just like that, and I yelled, “NO!” but there is no stopping the laws of physics. I felt myself moving through space, I heard the crack of my helmet, the slam into the hard road, and I remember thinking, “This is it.” I was going to break up into new pieces, rip away from this life and into some sort of new thing. I felt the deep-belly fear of what was coming, and a strange blankness of simply accepting it.

Then, a split second passed, I lay for a moment on my back, and I realized that nothing hurt. Could I–? Yes, I could: I stood up. No pain, just the small sting of scratches. Picked up my bike. My head felt a little heavy. I gathered my shoe, which had come off and was stuck inside the crankset, and my now-broken sunglasses, my helmet, and its scattered white brim. “Are you okay? I’m so sorry,” the driver said. I could tell he was. We were both shaken up.

Another guy came over and said, “It’s not your fault, you know,” and we both looked at him, not even knowing which of us he was talking to. But as a unit, we felt intruded upon, annoyed that he was interrupting what felt like our moment. I was actually resentful of the guy for turning this into something even uglier, about fault and laws and money. Especially since I was walking. And alive. My driver motioned to him to just can it. I agreed. We just needed to check in with each other.

Yes, I sound like he was the victim. Shouldn’t I have been angry? Shouldn’t I have demanded he give me his information so that I could bill him later?

But no, all I felt was this weird bond.

And, how could I have marshalled my senses that way, when I was just so shaken? I felt like I was only partially there. It was like I was floating around us, just going through some sort of post-accident motions, when all I wanted was to get out of there, get away from what had happened. I didn’t care to get his name, the promise of remuneration, his wellwishing. I didn’t want to stand there any longer than I had to to get my bearings and be done with the whole thing.

I actually rode the rest of the way home, which was only around the corner and up a small (but steep) hill. I was holding onto my broken glasses and helmet brim, with my helmet merely sitting on my head, unbuckled. As if I still owed myself the wearing of the helmet, but not really. Again, going through the motions, just to get home. To my husband Ned, to my home, to my bed.

It wasn’t until I got home and sunk down into my family, and my couch, that I started to cry and cry, just burying my face into my sweaty tee shirt collar and roar it out. I rested a lot that day — I actually slept most of the day, whether from doing 19 miles that day and 18.5 two days before that, or from the accident — and woke up feeling great.

I have a lot of bruises and stressed-out muscles but nothing else. Nothing but life and the open road ahead of me when I feel up to it. I am alive and nothing can stop me from living it on my terms.

 

Scarlett Begonias Rockhopper and me: together through thick and thin, ice and sun.

 

Sunday, June 10, 2018

I’m Biking For The MUSE Foundation

I am doing my first charity ride, September 1, in an organization called Bike to the Beach. Bike to the Beach pulls autism philanthropies together under their widespread umbrella so that multiple autism causes can come together and raise a good deal of money while networking with each other and raising awareness. My team is Team MUSE Foundation. MUSE, which stands for Music, Unity and Social Expansion, is a non-profit that is all about community inclusion and social opportunities through musical instruction and performance.

I joined the board of MUSE in December 2017. I go to every rehearsal because Nat is part of MUSE. Nat started out playing in the rhythm section but as this story goes, one evening practice he heard a song he knew from long ago “Life is a Highway,” and he moved towards the mic. We all said, “Nat, sing!” and he did. Now he is one of the chief singers in the band, The Brookline Buds. There are currently two bands — the other is The Next Big Thing — but MUSE would like to expand to three — we have a loooong waiting list!

I would love it if you, my faithful readers, would consider a small donation towards our ride. Here is the link to my page, where you can find pictures of our MUSE students and instructors, and my donation button. Thank you for reading my blog and for supporting MUSE.

Monday, June 4, 2018

Thought For Food

Why down? Why now? No reason on earth. The mind just roams, searching, digging for the reason for the sad, ostensibly to pounce on it, crush it, make it so flat as to disappear it. But — the law of conservation of matter — so that can’t happen. Or is sadness an energy, rather than matter?

Doesn’t matter.

Somehow there is food attached. Or Food, as a big concept. Food I just ate. Food I want to eat. Food I can’t eat. Hours until I can eat again. And then it all falls to that: hours. There are hours worth of what I am supposed to do but really that I can postpone so why do it when I don’t feel like it? But if it’s supposed to get done, why put it off?

My body sighs, knowing that there is nothing to know. It is just this way, has been for my entire life. Well, except when it’s not. Pockets of time. A lot to do but nothing to do. So then it becomes a stretch of time to get through. And then: what a waste of time, of life. And so, even more reason to feel bad.

This is why depression has nothing to do with reason, with logic, with smarts. Depression is about the Nothing. It makes no sense, yet it becomes my entire reality.

To me it looks like a hated stretch of time that I hate myself for hating.

I look around, thinking, eat or sleep? The third is unthinkable.

And then I see the window and the light out there. It is a matte white light because it’s raining. Oh that’s why, many will say. No that’s not why. Because sun doesn’t change it when it’s there. James Taylor said it right, “I’ve seen sunny days that I thought would never end.” To me that meant they just went on and on and because I was sad while it was sunny that made it worse. Now I wonder if he meant he thought they’d never end, meaning he was enjoying them so much he didn’t have time to realize it wouldn’t last. Actually, that is probably what he meant, but I’ve known that song since third grade and always thought it was a person wishing all the happy sun would just fucking stop because they just can’t.

But still, there’s light, and it’s outside, which makes me realize I could do that: just go out.

But what if that’s nothing, too? Then I’ve tried the one thing that looked positive and it’s also a pocket.

Once again, too much thinking. Just go and see.

 

 

Sunday, June 3, 2018

Hall of Fame Speech

I was inducted into my high school Hall of Fame today! It was a lovely ceremony, with three other inductees from other graduating classes. The bond we shared was public service and giving back to the community. I feel so honored and honestly blown away by the thoughtful ceremony and the achievements of the others there. By the way, my high school is named after former U.S. Senator Brien McMahon, and so we were the McMahon Senators! You can imagine how interesting that was for me…

Here is the speech I gave today, drawing from certain life lessons of two of my favorite teachers:


“Get out of your culture,” Charlie Wiggins used to shout at us in twelfth grade Anthropology class. He meant that we were guilty of seeing different people through the lens of Americans. We were being “ethnocentric.” Unconsciously judging the world by our experience, our rules and mores, our privilege. Mr. Wiggins was thought of as kind of a hippie, a free spirit, and — even though I did not know the word in those days — a progressive.

I’d never heard of ethnocentricity. Oh, I knew other societies were different — like the French spoke French (and acted it!) Indians thought cows were sacred, the Puritans had avoided any sort of color or joy in life. But in my mind, people were still kind of like Americans, or wanted to be. Until Mr. Wiggins came along, and we studied the peace-loving Pygmies of the Belgian Congo, and also the warlike Yanomami of the Amazon Rainforest. And then we were asked to create a culture of our own. So my class worked for months on the making of Ema, which a classmate said meant “now” in Japanese. The point of Ema was that everything we did was all supposed to be in the present, for the present. Everything came down to just being here on earth.

The climax of the semester was for the class to go on a weekend camping trip where we would try to live in the world of Ema. We chose new names, from nature. I was Earth. My best friend Cynthia was Sky. One girl was Fern Texture.

God, we tried so hard. But the thing fell apart because we squabbled, we made inappropriate jokes, we started secret romances. We were teenagers, basically. And also, because cultures are actually so complex, so intricate and organic, that they cannot be constructed out of whole cloth, even in the greatest classroom environment. And yet in failing to become true Emas, we succeeded in appreciating the heart and soul and wisdom that goes into different cultures. We learned in a visceral way, the value of difference.

Bookending the mindblowing experience of Charlie Wiggins’ class was perhaps the perfect contrast: Stephen Hofheimer’s English class. Mr. Hofheimer, who wore leather pants and saddle shoes was the hippest thing we’d ever seen. Hoff is the guy who usually gets chosen as Favorite Teacher. He’s the one you seek out to autograph your yearbook. Everyone had a crush on him. We idolized him.

But AP English was also serious stuff. This was where we would maybe earn a college credit. This was where we would read The Classics. And maybe most important of all: this was where we would learn that secret formula to getting into a good college: Mr. Hofheimer’s weekly SAT words. We actually had to memorize something like 20 words each week, strange, hard words, like “Jejeune.” Or “Afficianado”. And, ironically, “sesquipedalian.” He would say each word out loud, getting his mouth around the thing like it was a fine dessert. He would give you the definition, and then use it in a sentence. It sounds – and was – boring, and yet. It was the first time I remember feeling the exoticism of words. His excitement, his appreciation for the very taste of a word, settled somewhere inside of me and I fell in love with language. And how to use words with care and precision.

I went off from McMahon and went to Penn, then got married. My husband Ned and I moved up to Boston. I thought I’d be a writer of some sort, and just continued writing novels that are still in my attic — and probably belong there.

Then I had my first child, Nat, and everything I’d ever known turned on its head. This beautiful baby was nothing like the baby books. He did not play with toys, he only mouthed them. Or lined them up. He did not like to be around other children. He would not get out of his stroller at the playground by the time he was 2. He could not answer a yes or no question. But he memorized entire books, talking endlessly from them, in scripts.

My Nat was diagnosed with autism by the age of 3. So not only did I have to deal with heartbreak, and learn about autism (before the Internet), I had to learn who Nat was. And I had to learn how to be a mother where there were no autism mothers around me. I had to learn what it was like to have a child who was very different from every child on the playground.

It took a few years for me to get on my feet. But one night, the day before Thanksgiving at my Aunt Rhoda’s house – she’s sitting right there – my husband and I were talking about how hard it was going to be to take Nat to the big family dinner, when we got the idea to make a book that would tell him exactly what to expect at Aunt Rhoda’s Thanksgiving. I wrote out the words in a way that Nat could understand, I cut up photos, we taped it all together.

Nat loved – and memorized – the book. And Thanksgiving was a success. Suddenly, I knew how to help my son. At my mother-in-law’s suggestion, I composed a brief article that described what we had done with the “Nat Book,” and it was published right away, in Exceptional Parent Magazine. Suddenly other parents wanted to know what I thought, what I’d learned about autism.

What I was learning was that the world was not prepared for guys like Nat. From lack of awareness to lack of funds to lack of empathy. To lack of best practices, fair laws. And it felt like I had to do something about it. I had to educate the world. I wanted them to understand and know Nat, and never ever simply dismiss him. I had to become an advocate, and teach everyone about difference. I have had to show people what an entirely different existence looks like. With my writing, I have tried to gently lead people out of their culture and connect with mine. With Nat’s. In writing my books, and in crafting a 750-word essay worthy of the New York Times or Washington Post, I have had to put myself deeply inside the moments of my life as Nat’s mom, and get other people to care. By using just the right words. Making every sentence count. Because the stakes are too high to fail. This is for my Nat, after all. And for struggling people like Nat. It’s on me to get people OUT OF THEIR CULTURE and open themselves up to difference.

That’s why I do it. And I know how to do it, in part because of this school.

Thank you so much.

 

 

Friday, May 25, 2018

Wood that it were clearer

Yesterday I had to pick up Nat from his day program so that he could get to his band rehearsal and voice lesson by 6. His usual routine was unavailable because the group home needed the van for an event, so there was no way to take Nat to his practice.

Nat was ready the moment I showed up, of course. Someone is always hanging around the entrance and everyone knows me there by now, so the grapevine gets to Nat before I do. He walked right past me, to the car. I started up with conversational attempts because I have a problem with no talking. I do this, because I think it’s right, too. Even though — or possibly because of — Nat’s difficulty with talking. Ableist mother, right?

Or is it a caring mother who still believes in educating her son — although he is 28 — in the ways of the world?  I’m sure the autism community will decide.  But Nat needs to be as skilled as possible, he needs to work on his social skills. Just like I work on getting through my times of deep depression, when I just want to cancel everything and go to bed. I work on thinking, “this is only now, it will pass,” even though I just do not believe it at that time, even though I have so much evidence that I will find happiness, beauty, and good things again. That’s (some of) the work I have to do as an adult in the world. So shouldn’t Nat have to work on himself as well? If my insistence that he interact with me in the car for two rounds of conversation — is kind and respectfully done, am I still being ableist?

So we drive home in silence mostly, with me making comments here and there about what is going on around us — the beautiful day, the traffic, the stupid drivers, our upcoming weekend. Nat doesn’t answer, though maybe he is responding inside. It is worth doing. I have done this his entire life — talked to him a lot even without knowing where it was going — and one doctor said, “that is probably why he is as verbal as he is,” meaning, if I had not done that, he might not have developed even to that extent.

To me, avoiding ableism is about respecting the person and treating him as an equal. We can help each other be more skilled, more fluent in the ways of world. Any time you correct someone’s pronunciation, or school them in facts vs fiction, you are educating them as long as you are not disrespectful or superior about it.

I take Nat from where he is, and go with that. During his band rehearsal, I watch him in delight and awe. His passion for singing is just a wonderful sight to see. He has this hobby, this pursuit that fills his soul, and it shows. But yes, during the singing, I saw that his cuffs were flapping around and annoying him and I asked him if he needed help with them. He said, “yes,” and I rolled them up for him. I had tried to teach it to him earlier in the car, but he did not understand. So for the sake of expedience, I did this for him, thinking as always, “am I treating him like a baby?”

Once we were back home, we sat in the living room together silently. He was watching me. I had nothing to say to him at this point, nothing left to ask him. I started dozing, when it occurred to me out of the blue that I could offer to read to him. He could always say “no.” But I asked him, and he said, “yes,” immediately, I asked him to get a book, and he got out an old old favorite, Disney’s Pinocchio. I read it, wondering if this was okay. It is a little kid’s book, not an adult man’s book. But he chose it. He wanted it. He sat for it. He filled in the blank when I said, “A little boy who won’t be good might just as well be made of ____.”

“Wood.”

Yay! Either this was because he was reading along, or because he remembered it from childhood! A skill either way. Win-win.

And furthermore, he smiled once in a while while listening. He wanted this. It was not age-appropriate. I know it was the right thing to do, though. It was easy, because I enjoyed it, and he enjoyed it. I met him on his terms. This is how you do it. But still — so happy about the skills he displayed.

I wish it were always this clear. Maybe more Disney would do the trick.

 

Friday, May 4, 2018

Healthcare Crisis in Autism Adulthood

In early May I wrote another piece for Psychology Today and you can read it here.

Monday, April 16, 2018

Musical Instruction and Performance: A Game-Changer for Autism

I have just published a piece in Psychology Today, about music being a game-changer for autistic adults. I based the piece on both anecdotal and personal experience (with Nat and his rock band), as well as research.

Thursday, April 5, 2018

Autism Adulthood

Salon.com published an excerpt (“Someone Hurt My Son”) from my book’s updated edition. You can read the excerpt here. It is an essay about what happened when Nat came home for the 4th of July two years ago and we discovered a fist-sized bruise on his chest and broken ribs. The new (April 3!) edition of Autism Adulthood: Insights and Creative Strategies for a Fulfilled Life, is now available everywhere. The new edition has some new interviews, a new chapter on trauma and healing, and many new resources. And a new cover!

Sunday, February 4, 2018

The Lonely Witch

Near a small village where the river flowed into a deep narrow valley lived a young witch woman with hair as black and as long as a winter’s night. She lived with a cat the color of smoke, in a curious house painted a strange blue such as no one had ever seen before in this village of brick huts. Though the woman was a witch, the people were not afraid of her, for she had never set an evil spell in anyone’s memory. She made music, and she made magic. Her music was sweet and high pitched, like the hum of honeybees. And the only magic she practiced was making potions for the townspeople’s ills. If someone had a sleeping sickness or the ague, or a broken foot, the witch would retreat to her little blue house, shut her vine-covered door and then a few moments later she would return, producing for them a glass ampule full of some magic liquid, and with a few words of instruction, she’d send them gratefully on their way.

The witch was called May, for that was when she could be seen most often, gathering herbs and bits and pieces of animal leavings, bones, fur, and fewmets. She could be found staring intently at the sunny sky, or the stars at night, scribbling odd notations and jumping up and down with joy as she solved some strange puzzle that only she could know about.

Though May was a young woman, she was always alone because of her strange ways. There had been a young man or two who had dared venture to her door, seeking her company, but she had never answered their knock. A few bold children would call to her to come and watch their games, for they were young and intrigued by the idea of a witch. But she would remain inside. Only the townswomen would be allowed inside but just the doorway, and only when they sought her help.

It was said that May did not like people, but this was not the truth. May was very lonely and wanted a friend, but she could not be in the company of children or the townsmen. Everytime they drew near, she would have the most powerful pain in her head, and she would have to stay very still and think of nothing until they went away. There were no unguents or potions she could make to soothe this pain.

Each year in the late spring May would venture forth into her deep valley and fill her apron and her heart with the bounty of the earth. The newborn animals and the fresh seedlings were her only friends.

One particular spring, the sun did not show its face at all. The rains fell day after day, turning the grassy meadows into mud, and causing the young plants to droop and grow soggy. May’s heart ached more than ever with loneliness for she had to stay indoors during her favorite time of year. Finally she grew so weak and tired that she sought the help of her book of enchantments. Thumbing through the gilt-edged dusty pages she searched for something that would help. She came across an entry labeled “Life Force,” and she read the words. The Life Force spell was the most powerful of spells, and May had never known anyone to use it. But the spell told her that Life Force could be summoned in the most dire of times, by only the most skilled of witches, and it would bring to life something that had never drawn breath. It could not revive a dead soul nor could it keep a dying person alive, but it could create a life.

There was one condition to the Life Force spell: once this life was created, there would then come another being, someone who would need tender care the rest of their life. The spell book did not say anything else about this child, but May decided she would take the chance nevertheless. How she would tolerate the voice of a child? She knew not the answer. She would have terrible pain the rest of her life. But the pain in her heart was even greater, so she felt she could accept this condition.

She looked around her room of bottles, vials, and beakers. They could not become a person. She studied her oaken casks, her black iron pot, her stove. Her cat was alive, and so he could not be changed.

Suddenly she cast her eyes on her violin. “Ah, this will be my friend,” for the violin already had a voice that brought a smile to her face. She corrected herself. “My husband.” Her head pounded in response, but she knew that this was the only way to ease her loneliness. She shut her eyes and she whispered the powerful sounds of the Life Force spell. She waited. Suddenly she heard a voice. But it was not the deep rumble of a man’s voice. It was a young woman who stood before her.

The woman was small, and delicately formed. She had hair the color of spring earth, and eyes the shade of lilac blossoms. “Hello, May,” She said, smiling. “I’m June.”

May’s heart leapt with joy. Women never brought her pain! She would have this beautiful friend and she would have no pain! How could this be?

As if hearing her thoughts, June said, “Yes, your heart summoned a woman spirit, a summer being, and so here I am. “

May wanted to fall on the floor laughing, and weeping with joy. For June’s voice was the sweetest sound she had ever heard, that of the birds awakening in their nests, in the pinkening sunrise. The music of wings in flight, of eggs hatching, of gentle breezes that shake rosebuds awake.

June pulled May into an embrace and May felt her strength return, like sap through a tree. When at last she lifted her head, she asked the question that made her heart ache: “Where is the other one? The babe?” Her voice shook because she was terrified of this, knowing the pain that would come.

But June said, “Come outside with me, even though the rains still fall, and we will search for him. Don’t be afraid,” She held out her hand and May followed. The outdoors was so wet that their boots sunk into the ground, which sucked and pulled at them. May’s cloak was wet through. June did not seem to notice her own soaked cape.

They heard a noise, the tiny chatter of small animals. Out from a log sprung the strangest creatures May had ever seen. They looked like mice, but had rabbit ears and deep fur. “Oh there are my friends,” exclaimed June. “What do you have to show me?”

The three creatures chattered a little more, and then ran away, deeper into the woods, stopping at a small cave. “Here?” June asked. The three creatures chattered some more and then darted off into the cave. May and June crept inside.

There sitting by a small underground spring, sat a young man. But as their eyes adjusted to the darkness, they could see that he was not actually a man, for he had elfin eyes and the legs of a pony. His body was long and thin, and they could see his bones through his delicate skin. He looked at them, shook his head, and a golden forelock fell forward between his frightened eyes. He opened his mouth and made a sound as soft as moss underfoot. May’s heart turned over.

June said, “He is lost and hungry, poor thing.”

“Oh, he is so darling,” whispered May.

June smiled.

May said, “But this can’t be –“

And June said, “Why not? He is all alone here, in desperate need of food, but he knows not what to do, because he is merely a colt.”

May said, “We must help him!” And she knelt to touch the tousled head. The creature made the sound again, but it was quieter this time, and he closed his eyes.

June said, “Let us take him home and we will make him well again.”

But May’s heart leapt in fear. “The townspeople. They will be afraid. They have likely never seen someone like him, a boy-colt.” June laid a finger across May’s lips and said, “It is of no consequence. He shall be ours.”

May was still filled with fear as they led their foundling back to the blue house. Almost immediately the townspeople learned of the strange creature in their midst, and of the stranger who had come to live with May. And they shook their heads because they did not know what to make of it.

But as the days grew warm again, and the sun came out, young women ventured out into the valley where May, June, and their foundling lived. The door still opened for the townswomen, and one by one, they would return home with their potion to heal whatever ill had come to their household. They could sometimes hear the soft whisper of the creature’s voice, but it only reminded them of the sounds of the forest, and it did not make them afraid.

In fact, some of the townspeople started to notice, out of the corner of their eye, other similar creatures cantering at the edge of the forest. At first some of the children would laugh and point, but there was something about the soft whinny from the colt-children that stopped their laughter. They could see that the colt-children were suffering, in pain, unable to feed themselves. How they had lived this long no one knew. The parents would take their children by the hand and creep closer to try and understand what the creatures were saying. They started leaving food and drink at the edges of the forest.

The creatures came around more often, bringing the sounds of quiet with them. Men, women, and children alike would find themselves relaxing, resting, and enjoying the world around them whenever the creatures came near. Some found that their sons and daughters refused to leave the creatures, delighting in their sounds and their large bright eyes.

Many families eventually took the creatures home with them and raised them as their own. And no one knew where the colt creatures had come from. Eventually the townspeople forgot that they once had not even existed.

Only June knew that they had likely always been there, perhaps in another form, waiting to be seen. For some beings can only been seen when the heart is truly ready to do so.

Thursday, January 25, 2018

The Caregiver

There was once a woman who lived in a castle. She had everything she wanted, everything she needed — the finest food, plentiful drink, bountiful silks, warm woolens, the softest leather shoes. Her castle had tall windows cut into pink rock, and they lined the strong walls, curving around the towers and drawing in sunlight from every angle. The woman was known far and wide for her learnedness, her ability to understand even the most difficult of problems, and to solve them for the people of the land in a gentle manner that made them feel both cared for and empowered at the same time. She was beloved by all.

The woman had a son who was as fine a young man as could be, having grown up with her warm attention and beautiful, comfortable surroundings. He was tall, with hair the color of summer meadows, and eyes as blue as the azure sea that spread below the cliffs. He was as handsome as a prince, and upon meeting him girls would sigh with a longing they had never felt before.

And yet the youth was alone. He had no friends, because he could not speak, other than the strange sounds that came out of his mouth. Nor did he look at anyone. His eyes looked just beyond them, as if only interested in something far off. This caused much discomfiture in those who met him, and so that once people spent time with him they would eventually feel their hearts turn away, their eyes searching for an opportunity to move away from him. They learned from one another to smile at him even though he never responded. If they needed him to pay attention, if some danger were imminent, they would touch him gently on the arm. Only then would he look directly into their eyes, but for a flash only.

In that brief moment, people could see something, but they did not get a long enough look to understand what it was. The baker described it as a dream he’d had, where he’d felt happy upon awakening, but knew not why. The miller described the look as the moment the light shifts from winter to spring. People nodded at her description, satisfied, for they understood the importance of that time of year, that softening of air, the unfurling of something wonderful but unseen.

And yet, this sliver of the young man’s mind was so fleeting that it only caused more sadness and frustration among the villagers. And none so much as the boy’s mother.

It may be that her heart was too deeply entwined with his, or that her great mind grew clouded and gauzy with what she wanted so badly, but she simply could not teach him to talk to people or to listen. This felt like a profound failure to her, and this sliced at her soul like a dagger. And yet she forced herself to carry on and to show him how to do things. “If he cannot speak, and cannot think,” she said to herself, “at least he will be able to feed and clothe himself, and to ply a trade.” For her biggest fear was that he would have nothing and no one to look after him when she was gone. And truly, how could others, when they understood nothing about him?

Still, though they found it difficult to witness his strange eyes and hear his coarse sounds, they tried very hard to welcome the young man into their shops, their homes, their gatherings. The mother helped this happen by using her great wealth. Every day she would come down the castle steps with her son and no matter what she was feeling, no matter how tired or sick she might be, she took him into one particular shop or another. She would always take care to greet the proprietor warmly and to ask if he or she might allow her son to stay there, and perform any task for them, no matter how great or small. In return for their patience, she would pay them with a sack of gold.

The son could be seen carrying the heaviest loads of wood, and stoking great fires for the baker. Or he would be walking slowly across town with a set of fine crockery in his arms, careful not to break anything. Or he would be down on his hands and knees scrubbing the dressmaker’s shop till it shone. And he would do it but he would grunt the entire time.  He merely worked like a farm horse, sweating, chattering loudly like a squirrel and never smiling.

He never seemed to remember from day to day what he had been taught the day before. This tried the townspeople’s patience, but because they needed the gold, they tried every day to show him once more what he had done for them only yesterday. “He is a good boy,” the shop owners said to each other, but they really did not believe it. He was simple, useless, except for the tasks they would show him to perform every single day. Though he was a man, everyone saw him as a boy because he knew even less than their own infants.

One night the mother fell deeply asleep. A fairy came to her in her dream and said, “I will give you that which you desire most of all, but you must give up all of your worldly goods. But you will have your heart’s desire.”

Though the mother was asleep, her mind was still working and her heart was still soft and pliable. She knew exactly what she wanted: for her son to be able to take care of himself when she no longer could.

The mother nodded and said, “Take it all. Give my son intelligence so that he may look after himself one day when I die. Maybe he will be a baker, or a miller, or a husband, or a farmer. For every day I have had others show him how to take care of things, how to clean, to cook, to fetch wood and water. But each day he is once again a blank slate. He comes home, eats dinner I’ve cooked and goes to bed without even being able to wash a single plate.” She poured out her heart to the fairy, years and years of anguish over her son ebbed from her, enveloping them in a cloud.

“It shall be so,” said the fairy, and then she flew away. Upon awakening, the woman remembered only that she had had some kind of odd dream. She moved to raise herself onto her pillows to think some more, only to find that she had no pillows at all; she had only a straw mattress on the floor. And the floor was not covered with fine rugs, but was merely packed dirt. She stood and walked the small area within the hut, cold because the hearth had no fire. There was no more castle with pink stone; she had walls of wattle-and-daub, just as everyone else in the village. Her clothing was but one worn gray dress.

“What have I done?” cried the woman. “That fairy tricked me!” She thought immediately of her son, who was still asleep on a pallet on the other side of the room. The morning sun lit up his beautiful face, but it only made her wring her hands. He would have nothing, because of her stupid belief in an evil spirit. “Now I have no gold to pay for my son to learn work!” At that moment, her heart filled completely with so much black sadness that it broke in two. She was overcome with the pain and fell to the floor unconscious.

When she awoke it was nighttime, but several days later. She felt her stomach growl in hunger, and all of her worry returned. She found she could barely lift her head. Though the two halves of her heart could still beat, most of their energy had drained out. She was filled with terror that she might be dying then.

Suddenly she heard a strange sound and turned over slowly, so she could see what it was. Over a flaming hearth stood her son. He was grunting and cawing the way he always did, but something was in his hand. It was a ladle. He looked at it for a very long time; he seemed to be thinking very very hard. Finally he lowered the ladle into the big black pot.

His mother could hear something sloshing around in it. She watched as he stirred, very slowly at first, and then speeding up. When he was finally satisfied, he dropped the ladle on the floor. His mother could not help but sigh in disappointment. But then he stared at the ladle and again, seemed to be looking at it as though he were trying to remember something. Finally, he picked the ladle up off the floor. He put it on the table. Then he looked back at the spatter it had made and once again he stared at it for so long his mother thought he had gone into a trance. At last he reached for a cloth and bent slowly to wipe it up.  He rubbed and rubbed at the floor. Although he had forgotten the soup, he had made the entire floor clean and smooth.

The mother was by now wide awake. The pain in her chest was nearly unbearable. Her stomach growled loudly, so loudly that the son looked up from where he had stood staring bewildered over the black pot of soup, trying desperately to remember something. The noise from her stomach was a sound he recognized and he snapped into awareness, reaching for a bowl on the shelf. He poured the soup carefully, slowly, sweating with the effort to concentrate. But he filled it and then he carried it over to his mother. He set the bowl down next to her, sat down at her side, and stared at her for a very long time. Right into her eyes.

She gasped and then laughed, even though she was so near death. For there, in his eyes, was that sliver of him that showed so rarely. Only this time, though it made him tremble and struggle to breathe with the effort, he continued looking into her eyes. His tears came and dropped onto her hands. He babbled some more and turned away, reaching for the bowl.

He slipped an arm under her head as carefully as a doe tending her new fawn. Ever so gently brought the spoon to her lips. She could feel his body laboring to hold onto his focus. She tried to find him in his eyes again but he could not look again.

But it did not matter. He spooned the soup into her mouth, cradling her in his arm. From time to time he noticed the drops of soup on her chin and eventually remembered how to dab at them with his sleeve.

When she was finished eating, she felt that her heart’s pieces were full but that her spirit was beginning to make her head feel light. He tucked the bedclothes around her, and slowly brought the bowl over to the washbasin. Again, he stared for a long time at the basin. “The time is drawing near, my son,” she said so softly it sounded only like the evening breeze.

But he had heard her. He walked over to her and took her hands. He once again looked deeply into her eyes and showed his tiny light, though it hurt him to do so

She shut her eyes for his sake, but she was suffused by joy. For she knew that the fairy had not lied after all. It had not come the way she thought it would, though she had tried to teach him every trade there was. But he was not a miller nor a baker nor a handsome husband, nor a farmer. But he was enough. And even though he was as slow as the years, he was indeed able to take care of himself.

 

 

 

Wednesday, January 24, 2018

The Mandolin

Dear Readers, I have improved this story. See what you think.

Many years ago, in a small village across the sea, there lived a woodsman and his wife and their infant son. Every day the woodsman went into the forest to cut wood and then shape it into bowls, plates, and anything else that was needed, and sell it to the people in the nearby villages.  The woodsman loved his wife very much and would carve for her small things out of the wood scraps.

The woodsman’s wife was a beautiful young woman known far and wide for her beauty and for her healing powers. It was said that her green eyes, so unusual in color, could look into a body and see the sickness. Even though she was so young, she had cared for and cured many, many people, young and old, for miles around. People spoke reverently about her knowledge of herbs and plants and her great mind, and her all-seeing eyes.  Sometimes a person could simply catch sight of her coming up the walk and they would feel something ease inside them. For her success with sickness had become so well known that the very compassion that shone from her lovely face also aided in their recovery.

The one person she could not cure was herself. She would have bouts of sadness that were so heavy and black they blotted out the light in their small cottage. She would take to her bed for days and days and there would be a silence throughout the town as if everyone else was also feeling this great sadness. And indeed they were; such was the deep love they had for the young healer, and their sorrow that they could not return her care.

The woodcutter loved her most of all and when she would have her spells, he would become desperate to help her. He would think about all of her favorite things — flowers, trees, and plants — and these he would carve into the darkest hours of the night. His warm hands and his tears would soften and shape the wood into miraculous, intricate likenesses. When he gave them to her, there would be a brief tremble across her lips, the beginnings of a smile. And though it would just as quickly disappear, he knew she had felt momentary joy and would soon feel better.

But one day the young wife fell into a sadness that was deeper and darker than any she’d had before. The air in the town became cold and cruel, sending the townspeople indoors for days and days. The snow fell unceasingly and all activity came to a halt.

The woodsman was the only soul who dared venture outside during this time, because he desired nothing else but to find the perfect bit of wood and create something very special to help her. He walked for a long time but never lost his way, even with the deep white disguise of the snow, for he knew the shape of the forest as surely as he knew his own heart.

He was searching for one particular tree, a rosewood, and finally came to the small stand of rosewoods by the distant edge of the forest. There, in the center of those red-brown trees, stood an exquisitely curved rosewood. It had been cleaved in half by lightning yet was still upright. “Ah, this is the tree,” he said with a certainty that surprised him. It was as if someone else were speaking. He chopped at the heart of the tree and it was as if someone else were holding the axe. The tree trunk fell away easily and gave up its center, where its wood was newest and of the rosiest hue.

The woodcutter returned home and began whittling away at the bark. But again, it was as if someone else had hold of his knife. He did not know what he was making, but worked away with the help of this unseen power. What he did not realize was that it was his own life force that he was pouring into his work.

When he was finished, there before him lay a beautiful mandolin. It had a delicate neck, a curving top, and cut into the body of it were two hearts, to let the sound out. He went to his wife and awoke her. The moment her eyes opened they caught sight of the perfect instrument and she smiled instantly. She reached for it but noticed her husband’s arms trembling. She looked up at him and instead of her strong young husband, an old man stood before her. In an old crackling voice he said, “Play it, my dear.” Terrified, she began to play. As the melody curved above her head, she closed her eyes, for she had never heard such an intensely beautiful sound. It was the sound of springtime, of growing plants and blossoming flowers. She played and played, and her heart rose like the sun in the sky. The snow stopped and it was daylight.

When she opened her eyes, though, her husband was on the floor, dead. Her heart burst inside her chest and she fell to the floor next to him, weeping and dying.

************     ************

Now it happened that a stranger was traveling through the forest in search of shelter. He came upon the clearing in the woods where the woodsman and his family lived. His hands trembled and his feet had lost all feeling. He was about to knock on the door when he heard the most beautiful music. It rose and curled around him like the warmth of a hearth fire. It lulled his aching heart and warmed his numb limbs. When the song ended, he rushed into to the cottage to find the person who had played this incredible music. But when he opened the door all he could see was the old man, and the young woman with her arms around him, and he knew they were dead.

He sank to the floor in despair for the poor people, who though ill-matched in age, clearly had loved each other. Just then the rising sun shone a light into the corner. And there he saw a cradle — and it was rocking. He went over, looked at the baby, and inhaled, breathing in the sweet scent arising from its breath. Then it opened its eyes. They were the most astonishing green he had ever seen. And now, right next to his sadness, was a bubble of laughter; this was because his wife was childless, and he had been searching far and wide, across the sea for a healer. Instead he had lost his way in the snowstorm — and ended up here.

Looking out the window now, he saw that the snow had stopped, and there was daylight spreading across the horizon.

What a strange and wonderful gift he had been given. He knew he had to act swiftly. He slipped his large hands around the child, but as he lifted him out of the cradle, he felt that the spine of the child was lumpy under his fingers. A shadow behind the full daylight fell across them. Quickly he bundled up the baby and fashioned a knapsack to hold the child at his chest. He whispered a prayer of thanks to the couple, and knelt to scoop up the finely carved mandolin as well. Perhaps he could sell it for a good price. The baby slept peacefully against his body.

When the man returned home after so many months he found his wife huddled in a chair by the fire, her face nearly shapeless from crying for so long. But when she looked up and saw not only her dear long lost husband but also a baby, she stood and ran to him, young and strong again. He loosened his knapsack and handed the baby to her and she cradled him in her arms. The mandolin slid off his back against the floor. A small crack opened in the body but neither the man nor the woman noticed in their joy. Eventually they remembered the pretty instrument but because of its cracked body, they knew they could not sell it, and so they hung it up on the wall over the fireplace. “It will cheer us on long winter nights,” his wife said, though they knew they already had so much to be cheerful about.

The man and his wife raised the boy with all the love in their hearts. The man taught him how to hunt, and skin animals for their fur. They told him nothing of his birth parents, for they knew nothing about them, and he was surely meant to be their own son.

As the boy grew up he wanted for nothing. The hunter and his wife loved him with all their hearts. But as he reached manhood, his parents noticed that he could not stand up straight. There was a twist to his spine, and his right foot dragged as he walked. He certainly could not run. The young man knew from a young age that he was developing an illness in his body, but he kept this feeling to himself and continued to work hard, like his father, at the furrier trade. But his mother, who was no stranger to sorrow, recognized how ill-suited was her son to this vocation. However, she had no knowledge of the healing arts, and she knew that he must have a livelihood, so, she sent him out into into the woods each day, with a bow and arrow on his back and a long knife at his side, and told him he must search the forest for prey. Her husband agreed, for they were simple folk who knew only a few trades to ply.

Because of his physical disfigurement, the young man’s sorrow grew with his shame. He found increasingly that he could not find any animals, or that whenever he struck down an animal, he also had the desire to stop its pain.

One day in early spring he saw a young doe. He drew back his bow to launch the arrow when suddenly the deer turned towards him. She looked right into his eyes and he saw that they were not the customary brown of a deer; instead they were the most unusual shade of green. His breath caught in his throat. He was stunned by her eyes, for they were somehow familiar to him. Was this an apparition? He felt frightened by this, but at the same time, he could see that she would make an easy kill. And because he wished so dearly not to bring shame upon his family, he drew back the string of his bow and took aim.

But suddenly the doe spoke: “If you spare my life, I will show you how to save other lives, for I know who you are. You are not a hunter. You are not a sick man. You are  a healer. ” She turned her back to him, allowing him the full view of her magnificent side. He knew he could easily strike her down, but he was so moved by her words, and curious, also. How could it be that he was not sick in his body?

The young man lowered his weapon and followed the deer into a meadow. As she walked through the glade she sang and the words of the song were not like human words; instead they were simple description and instruction. She would nod at patches of flowers and plants growing alongside them, and she would sing their names, and their powers. He knew that she meant for him to gather them.

He had walked for miles, and it was growing dark. The doe stopped and said, “You must hurry home now and think on what you have learned today. And you must kill no more.”

The young man turned to leave but he heard on last thing from the doe: “your healing wisdom will not come from your mind. It will only come with the song I have sung for you.”

Desperate to recall the song, the young man walked home as fast as he could, frustrated with his slow legs, his arms laden with the greens, his weapons weighing on his crooked back. Without a word to his parents he set his plants down on the table. He looked at their green stems, their myriad of petals and leaves, for a very long time in the silence of the night, willing the song of the doe to come back to him. But all he heard was the crackling fireplace.

As he stared into the fire and a spark jumped out, flying upwards like a lightning bug. He followed its path with his eyes and really noticed, for the first time perhaps, the old mandolin that hung there.

Where had it come from? He peered at it closely, his heart pounding in his chest. What a beautiful piece of art it was. Though over time it had become very dry, with more cracks, and its neck was separating from the body, the two exquisitely carved hearts remained intact. The strings were coated with dust. He blew away the dust and placed the instrument high against his chest, encircling the neck gently with his hand.

He found that the curvature of his spine was such that it arced itself in the perfect shape to hold the instrument. His throat filled with joy as he realized that for the first time he could enjoy his body exactly as it was. He plucked the double strings on the bottom. Its sound was small and splintered, like icicles breaking off of an eave. Then he strummed the heavy double strings at the top, and he heard its bright hum, It was the sound of early spring water breaking through ice. It was the song of Nature, the song of the doe. And now the bundles of herbs and flowers made sense to him, and each told their own story.

That night the young man learned the healing arts. He realized that indeed he was no hunter: he was a healer. Renewed with a sense of purpose, he set out from his parents’ home and roamed from village to village, and began healing the sick and the sad with his herbs and his music. Soon word spread of the great skill and the strange way he summoned it, crouched over the old mandolin.

The young healer never learned of the origins of the mandolin, nor did he understand why he was able to play it so beautifully. All he knew was that he himself had been healed in his heart that night, all because a strange beautiful doe had given him her trust and her deep wisdom, and a mandolin that sang with her voice.

Saturday, January 20, 2018

The Reflection

There once was a girl who was born ugly. From the very start, everyone thought that word when they looked at her, and some even used it in her presence.. But what did it mean? No one could say, but everyone felt they knew. They’d heard it from others before, so that is how they knew what ugly was.

The one thing everyone knew was that ugly was bad. No one would ever want to be ugly.

In the case of the young girl, her face did not please. Her jawline wavered, not firm and straight. Her nose was graceless, long and bumpy. Her skin was mottled gray and bruised pink. Although she could speak, her words came out strange. She did not seem to understand what was being said. She was also clumsy. Ugly. From the start.

She learned that being ugly meant there was nothing that was just for you, nothing but what other people in their clay-like hearts felt like they could spare. The people around her believed that she should not get anything, because she didn’t deserve it. Her face, her body were the things that closed the door to having anything of her own.

As an ugly being she learned to become a benign white cloud, and to float around, unnoticed. It wasn’t that she could fly or swim, it was more that she simply did not show up in a group. Nor could anyone hear her. She learned also to stand very still, with her neck slightly bent, eyes on no one, eyes disappearing into her doughy face. This way she let everyone know that she knew she deserved her invisible, unnoticed place — although it was hardly a place. She occupied a disturbance in the air, but only in the way that a cloud might suddenly change shape with the breeze, meaning nothing. She dared not mean anything because she could not bear an even deeper dislike that might develop, from the sneering eagle faces that surrounded her.

The girl grew into a woman because her body could not help changing. She would have given anything to prevent this from happening because it meant that someone would notice her. And indeed, one day the girl wandered into the forest and there she met a man. He was tall and dark as the trees around her, and he smelled faintly of pine and cold air. She did not mean to see someone else and certainly would have gone the opposite direction, but it was too late. He did see her. He looked at her for a long time, his dark brown eyes stared, unflinching. Her gray skin flushed pink; she could not help it.

He looked her right in the eyes and she froze. And his spell was cast. She felt herself being chipped away, like an ice sculpture. Her arms whittled slender and straight, her lips and mouth cleared out, smoothed into the shape of an opening rose. Helpless, her insides turned to water under her thin sparkling icy skin. And she became beautiful.

The man’s eyes returned to their normal state, brown and hard as tree roots, but they would not look away from her. The appraising look on his face gave way to a pleased surprised that caressed her like loving hands. And because she had never experienced this sensation of fiery eyes on cool bare skin, she gave herself up to him. This is love, she told herself. This is love because it is powerful and transformative. This is love because I am no longer ugly.

She found, however, that it felt best to walk with his arms around her. Her legs were shapely but they could not move much. They hurt with each step. The man held her up and she closed her eyes to the pain, and at last she was able to leave the woods. When she came back to the village, there was a roar of excitement, a rush to look at her, and the handsome man by her side. They looked at her and they smiled their relief that they no longer had to feel her shameful ugliness.

The young woman basked in their soft new feelings towards her. She started to move among them with a new palpable presence, they made room for her, they allowed her to stay near them. They talked to her and she found she could speak to them. But her words were not her own, they came out fully formed with clever and witty phrases she herself did not understand. Yet she saw that they delighted those around her. She continued to experience hot and cold, pleasure and fear, and polar opposites, all the time. Her head was always strangely light, but her heart was constantly squeezed into a knot. For she knew she was paying a price for her new beauty: she lived in a constant state of fear that she would lose it.

The man would appear suddenly, but she never knew when or where. Sometimes he showed up at the foot of her bed, golden with sunrise. Sometimes he appeared in her dreams, and bore her away to strange and wondrous lands, holding her by the hands as they flew through the night skies.

He whispered that he would never go away, but at the same time, every time he turned his head for the smallest distraction — a bird in flight, a breeze carrying a flower petal, a maiden on her way to the market — her insides would freeze, buckle, and crack a little. For it was his attention alone that made her beautiful and she knew it was not her own. And once she had tasted it, she felt she could never go without it again.

Over time, the man became tired of her fearfulness — even though it was he who had created it. He grew bored and would make the girl sad, again and again, showing up in places where he should not be, and fading away from places where he had once lifted her to the heavens. And she still needed to have his eyes on her that way, for it was the only way to save her beauty. But now, every night and sometimes into the morning, she cried knowing that he was indeed leaving her. She was no longer enough for him. She was slipping back into non-existence.

Finally he stopped seeing her at all. Her silvery white beauty simply melted away and she went back into the gray of clouds. She was ugly again, uglier for knowing that the wonderful magic of his attention had disappeared. Uglier for knowing now what could be, but would be no longer. “Back,” she yelled, in her strange garbled way, meaning “come back!” Her heart twisted. The clever words and sweet voice had gone. The townspeople grimaced at the sound of her voice.

Because she could move on her own again, though her gait was clumsy, she took to wandering long distances away from the village, because now it was too hard to go back to invisibility and ugliness. People had seen her beautiful, after all, and they could not help looking at her now with scorn for no longer being cloaked in that beauty.

She would often find herself at a large pond in a meadow, so clean that in fact it was blue. She liked the pond because it would not reflect her image; its blue simply bounced sunlight into her eyes. But she found that this light soothed them. And with the sweet gentle afternoon light in her eyes came the slow realization that she had actually been burned from the man’s searing glance. The spell he had cast had altered her sight by its fire. She understood now that though she was ugly, her eyes no longer hurt. How sharply they had burned, but she had not noticed because of the intoxication of beauty. She had not felt pain and blindness in her eyes when she had been beautiful, but now she knew that it had been so; not only had her heart hurt all the time, but her eyes had been scoured by him so that he was all she could see.

And so she came back to the pond more and more frequently, for she could feel her eyes returning to what they once were, though they were plain dull gray. Something in her heart had unclenched, as if it were a separate being. She would lie on the ground, by the banks of the pond, and feel her eyes growing soft and her heart spreading gratefully in her chest.

One afternoon by the pond, she felt yet another change. Her head was no longer light the way it had been with the man. But instead of making her sad, she was relieved because after all, this was her very own head. It would never burn inside. It was no longer hot and floaty, carved from ice by the man. It was the head she was born with, the head she was meant to have. And she was glad. For she no longer had to be afraid that everything would be taken away. She no longer had to be afraid, or look longingly for the man. When she realized this, her heart expanded more, until it was outside of her, and was wrapped around her like loving arms.

Now she stood up, encircled by her arms, yet stunned by the sensation of having an external heart. She made her way to the pond, wishing to feel the water on her face. Wishing also to understand what was happening. But as she got to the edge, she saw that the blue color of the water had disappeared, that it was only a reflection of the sky that had turned it blue. And if the water was clear, wouldn’t it reflect her?

She realized that if she looked now, she would see herself.

Shivering from an emotion she could not name, she leaned forward and there she was, her face wavering in the soft ripples, her big body embraced by her heart, which was now as large as the rest of her. The sparkle of the water lit up her shapeless image, and she saw so clearly her mottled skin, her ungainly legs. The light from the water caressed her eyes, which were now entirely healed. She looked at herself and was able to say, “Me.”

And though she could hear that her voice sounded crinkly like a dead autumn leaf, she was filled with a soothing warmth. She was so happy, because all her pain was gone, all her fear vanished, because at last she was fully herself. She stood up and the air shaped itself around her. She was visible, lit up by the light, assured by her heart’s warm hug. She was free. She was herself. She was safe. She was.

And she understood then — with a relief that made her cry for joy — that in being, she was neither beautiful nor ugly, she was herself. She had no reason to fear, she had no reason to hurt. She could think her own thoughts (though barely speak them).

And she lived happily ever after.

 

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