I send them out and nothing comes back. I try to send out an essay a day. To somebody. Some pubs claim they'll pay if I ring the bell; others admit that they can't pay in more than gratitude. If I ring the bell. Lately I've keyed on the payers. They don't tend to answer at all if you don't ring their bell, although one big parenting slick sent back my essay -- and my business card, still paper clipped to the first page -- with the scrawl, "Plz REJECT."
"I love the 'please' spelled with a Z," Jill said.
I didn't, especially, but I carry on. I keep a written record of sent essays, including the publication's and editor's names, URLs, e-mail and s-mail addresses, last thing submitted, date sent, and general comments: "Try more HOME and family stuff." "Pays big. Sounds snotty." "Likes feel-good stuff." "Indicate 'essay' on the outside of the envelope." "Nice rejection note."
Today, a big British parenting mag that's kept my hopes afloat all summer with a column ("American Dad") e-mailed that they're re-designing the book and probably won't need me anymore. Besides my being paid in pounds (check that exchange rate!), I was proud of how I found them. Ducked out to the Barnes and Noble one lunch hour and hung around the mothering magazine rack, scribbling editors' names and URLs in a worn spiral notebook. The column also made me feel some kind of freedom was possible, even at my onrushing age (41). All I needed was about three more similar gigs before this one conked out.
Which I didn't find, despite filling additional pages of the spiral notebook.
They were classy, their note smooth and caring, the kind of Euro-warm that makes you feel special even as you're being deflated. "So if you could just hold off on the column for now," the editor wrote. "We may not have a separate section any more for Dads, as it doesn't bring in enough ad revenue apparently. So I may get you to go back to features instead. In the meantime, hope you are having a good week with your little rascals." One of the sweetest notes I've ever received from an editor, but it still brought to mind my late great freelancer buddy Dan, who once said, "On days when nothing is happening, send out resumes!"
Good advice. So The Christian Science Monitor got "Watchin'em." Newsweek ("Nice rejection note...") got "Serenity Now." To Brain, Child went "Finding Nemo," to Parenting went "Squirrelin'," to Parents went "Unexpected." Head's up, Bellevue Literary Review, for "The Real Thing" is coming. The Sun can await "How Tired Is Daddy?," Junior "The Mad King's Dinner," and Funny Times "Weight and See." Woman's Day got "Broken in the Move," as did Family Circle. Mother & Baby ("Uses some true-life stories...") got "Alex," a true-life story if I've ever had one. Baby Years got "Alex" and "Unexpected." So far in my essay career, simultaneous submissions aren't a problem.
I don't expect to hear from more than a few of the above. E-mail has killed the rejection slip. E-mail did, however, bring the brightest spot of this month: a note back from Blake Bailey, author of A Tragic Honesty, a biography of the late novelist Richard Yates. I've loved Yates for decades. I wish I'd written that book, which remains in the new bio shelf near the front of most big bookstores. I wrote Bailey to thank him for the book, and to relate the conversation when I called Yates himself, about 20 years ago.
I was flattered Bailey wrote back. "What a nice note, and many thanks," he replied. "Loved the anecdote about getting Yates on the phone. Yates was essentially a princely man, esp. to fellow suffering writers ... Cheers."
Cheers. Nothing to do but not think about my age (still 41) and carry on sealing the envelopes and clogging the bandwidth. I cruise the Web and visit the bookstores on lunch hour, and I see my British parenting magazine has a sister publication I didn't know about. (October 2003)
I know envelopes. I stuffed them in my freelance days, to get jobs at newspapers in 1993 and 1995, and when I really needed a job before Alex was born. In the past two years, I've been stuffing them with essays to parenting slicks, and some have even made it past those slush piles. Slush piles are where publications keep submissions and resumes until everyone determines it's time to throw them out. (I know this, since I once had a freelance job throwing them out.)
Most lately, I've been stuffing envelopes to book publishers and agents, stuffing them with 38 pages of the beginning of Alex: The Fight, Family, and Fathering of a Preemie. Like it?
Nobody seemed to, through months licking and dozens of walks to the Post Office. Most of the envelopes returned with rejection slips to "Dear Author" ("Dear" my ass), and making the whole proposal sound like the publisher's fault, like a bad relationship one side wants out of.
Then, what in my career has become known as The Law of Enough Stuffed Envelopes held true.
"Dear Mr Stimpson," the e-mail from the Chicago publisher read. "Please send us the rest of ALEX, with an SASE. Thanks."
Thank you! Jill took this news of my getting one step past the slush pile with a warm hug and a pronouncement of "wonderful" (she doesn't use that word lightly). She dove onto the publisher's site and, after finding that they're brought back some out-of-print titles she's always enjoyed, said they seemed "kind." That's another word she doesn't overuse.
Anxious for any syllables to add to a note back to this suddenly-important publisher, I passed along my wife's kind comments. "Thanks for your reply and for your wife's kind comments," came the reply, within a few hours. "We look forward to seeing your ms."
Wow. My ms. They want to look at my ms. I'm really in the biz now because they called my "book" an "ms." Now all I have to do is write it.
Of course it is written, and splayed across this site. A week's copy-and-pasting, clicking and dumping, bypassing some essays and spotlighting others, produced some 400 typewritten pages that start with Alex's birth and end with his first day of kindergarten. I ended each day with a headache and a suspicion that writing a book, when you try to do it in a week, is hard work.
Not to mention mailing it. Half an hour in Staples convinced me that nobody makes a box specially to mail manuscripts anymore. Any chance this book publisher -- in general not a swift-moving herd, I've noticed -- has climbed into the 1980s, and will accept two floppy disks?
"Paper, please," came the reply. "Thanks."
It's amazing what goes into a book, and even more amazing what doesn't. Most references to readers of this site had to go, as did episodic and glossary-like essays I compiled during the NICU days. Then I would spot an essay that should have gone in two chapters before, and I'd have to thumb back through the growing pile -- kept in a box that once housed letter-sized manila folders -- and re-insert the errant essay. Then I saw that my table of contents made no sense at all, so I was constantly re-typing that. Paper, please. Oh yeah, and I had to remember to add, "By Jeff Stimpson" to the title page.
Two inches thick, finally. How in hell do you ship something like this?
"Have you sent your ms?" came the e-mail.
What's this guy trying to pull?
At Staples I did find some padded envelopes about the size of the Constitution's mainsail. I lugged two of them ("...with an SASE ...") and the File Folder Box Of My Life to the Post Office. Nine-ninety, First Class. "You can just give me two $10 stamps," I said.
"We don't have those," said the clerk. "I'll give you two $3.85. That makes $7.70. Then I'll give you two $2 stamps-"
"I have four $1 stamps," I said.
"You do? Okay. Then you just need 20 more cents on each. You're not ready to mail this now? You do know that when you are ready, you have to mail this in a Post Office?"
I did and I do, the next day. I slide it into the Oversized Package and Bundled Letters slot, where it sticks and jams the door. "You have to mail something like that at a window," says another clerk. "If you do not mail it at a window, it will come right back to you."
"Dear Mr. Publisher," I later wrote, "I sent it early yesterday. I apologize for the delay, but I wanted to work a little on the TOC, cut a bit, and assemble a page of photos. Please let me know if you don't receive it in the next day or so."
The fastidious author. Surely he'll like that. "Thanks," came the reply, within the hour. "We'll watch for it."
How bored is this guy? Why's he doing this? What could happen? What could happen. I did mail it at a window, but I still expect it will come right back to me, by way of Chicago. At least I made it one step beyond the slush pile. (March 2004)
"This isn't a dream. This is really happening!" - Mia Farrow, Rosemary's Baby.
Here is the day I've dreamed of since junior high English class, since the moment I first typed "This is the story of Alexander Lee Stimpson" while trying to keep my hope up in June of 1998.
"Thanks for sending the rest of the ms, which we've managed to read and show in part to one or two people on our staff." This sentence opens a UPS-delivered letter from a publishing house that requested the full-manuscript of Alex a couple of weeks ago. Long and the short: there's a hole in their schedule, and they can publish it this fall.
Hole in the schedule? "Managed to read?!"
Among the first tasks: tinkering with and signing the contract; digging up some photos and writing a few promo paragraphs for their catalog; and one other thing:
"Before you send your disk," the publisher writes, "please eliminate duplications, repetitions. Take a good look at the organization and get the ms the way you like it best."
I get a contract, what Rick (not his real name), an old publishing friend of Jill's, assures me is probably a "minefield" representative of a long line of documents honed by generations of publishers to fuck authors. Rick's a nice guy. He was in this business for years, and has retired. He has a summer home. He doesn't have to talk to me. But he does, for 45 minutes, right up until he has to get dressed to go out to dinner. I also search the Web for stuff on standard book contracts. "Never sign a boilerplate contract," warns one primer. Never give them this, never give them that. Do the math on the royalties: You're probably getting gypped.
"The point of the whole thing is," says Rick, "you're not in a very strong bargaining position. You want the book published. And this is stuff you won't have to go through for your next 32 books."
No, I'm not. Yes, I do. "I'm thinking about just saying no, and putting it all in an e-book," I say to Jill. she nods.
"Oh, I think I should sign the thing and roll the dice and publish the book," I say to Jill a few minutes later. She nods. She looks at the publisher's Web site and sees that they've brought back a lot of titles Jill loved when she was younger.
"They sound kind," she says. Jill isn't wrong about this sort of thing too often.
I don't think fucking authors is what these people are about, especially after I call them. The guy sounds honest. He uses a lot of phrases Rick used. "This is a bad business," the publisher says. "All I can say is that if we make money, you make money." I bring up a small royalty (as Rick said, "I always think it's better if a little money changes hands").
Replies the publisher: "It's not our policy, but we're not adverse to it, if you'd feel better that way."
Jill takes the wheel for the first edit. "You're going to have to do more writing and re-writing," she announces on my phone, after reading the first few chapters. She's about to board the subway to go dishes shopping, but passersby who don't know that just hear a somebody who must be a Somebody barking editorial commands into a cell phone. "It reads too much like essays just strung together," Jill Somebody tells me.
I was thinking that too when I was, well, stringing them together.
Jill also starts contributing graphics ideas. She comes up with the idea of putting Alex's first footprints - each one an inch and a half long - on the first page of the book; on the last page will be his latest footprints, from an art project done last week. The publisher's art person loves the idea. The art person also mentions that we'll have to do photos in 8- or 16-page spreads, so we'll need some 30 pictures to sort through. plus a good photo for the cover as soon as possible.
"I never thought our family snapshots would be looked at by strangers one day as they thumbed through a book," Jill says. Funny: I always did.
I sign the contract, stipulating that I'll contact all web sites to remove my essays, and that the publisher must pay me $300 in advance of royalties. I still assume they won't pay. I still assume they'll just let the book drop.
A few days later, my copy of the contract arrives, along with an author questionnaire for marketing purposes, and a check for $300. I deposit it, assuming it will bounce.
Thirty-two more books? (April 2004)
(This piece was slated to be the introduction to the upcoming book of Alex's story. The editor suggested dropping it, however, and plunging right into the story itself. -- JS)
"After you have kids," goes the maxim, "the weeks go slow, but the years go fast."
My son Alex will be seven next summer. Where have the years gone?
They have gone to doctors, hospitals, conferences, hatreds, gratitude, envy, frustration, and worry. It began before he was born, a period when medicine invaded my life with scans, tests, and pretty young doctors with crucifixes around their necks who said, after eyeing my wife's sonograms, that they "would pray for us."
That period, however, lasted mere months, and turned out to be a rehearsal. Alex was born early on a June afternoon in 1998, in a hospital in New York City. He was three months early. They shouted "Boy!" and rushed past me. His head was a gray tennis ball, his arms and legs thick as magic markers. The father's first kick of awe and love sank into a feeling that Alex looked like a doll. The doctors dove on him.
He was not a toy. He was human. I was his father. I still am, and I can't remember what life was like without Alex. Lately the last of the seven years has disappeared into the worry that Alex, who has been diagnosed as autistic, will never live on his own. The worry that he will die, not before us, but after. That as an autistic adult, he will live in the care of strangers for whom he is just a paycheck.
Alex's story started in a NICU, or neonatal intensive care unit. Most families stay in NICUs for a few days or a week. Some stay longer. NICUs have been compared to casinos: bright lights, beeps, people with tired faces clustered in small, intense groups. The babies live in plastic boxes. Tubes run in and out of the boxes. Wires and tubes run into and out of the babies. There's always a bell going off. A lot of people in NICUs talk about "odds."
He weighed 600 grams at birth -- about as much as a couple of sticks of butter -- and he didn't grow in the NICU for, well, a lifetime. Lungs are the last thing to develop in a baby in the womb; preemies often have trouble breathing. Alex was intubated, with pure oxygen pumped into his lungs. ("Banging away at his lungs," one neonatologist once described it.) He wiggled. He didn't make a sound, because the tube was between his vocal cords. The only sense of balance came from the give and take of medical treatment. The drug Lasix, for instance, got the liquid out of his lungs, but retarded his weight gain. The same vent that kept him breathing delivered oxygen that scarred the tissue of his lungs, making the absorption of oxygen into his blood difficult. It's called BPD, or broncho-pulmonary disease.
"It's 'damage,'" Jill used to say. "Call it what it is: 'damage.'"
Alex spent six months in the NICU, came home a week, suffered some kind of respiratory crash in a pulmonologist's office - we think a nurse put him on an empty tank of oxygen, with a broken gauge - and he went right back on the tube and right back in the hospital. In the pediatric ICU, they had to keep this alert, willful, 6-month-old baby chemically paralyzed to prevent him pulling out his breathing tube. I asked one of his former neonatologists, who worked two doors down the hall, to advise a little on Alex's care.
"I have to tell you something," the doctor replied. "It's my opinion that the aggressive questioning by you and your wife during Alex's stay in the NICU altered the course of his treatment to his detriment."
As I watched a nurse wet his eyes with artificial tears (paralyzed, he couldn't blink on his own), somebody came by with a charity present. I unwrapped it, looked at the little plastic panda face, pressed the nose to produce the tinny circus music, and wondered, if it wasn't too aggressive a question, what I had ever done to deserve this.
On Christmas Eve, I went to a psychiatrist. She was pregnant. "What you've been through," she murmured, looking out her office window at twinkling lights, "it's inhuman." Good word, doctor. Who spends a year in the hospital and then comes out to begin his life?
What happened through the next seven years of my life, the life of my wife and family, continues. Alex usually picks up his toys when we ask him. And ask him. He helps put away the diapers that he still needs. He loves school. He spills his Cheerios on the floor, yet has carefully walked the length of our living room holding a glass cake plate without so much as a chip. He has a little brother, whom he has caressed, shoved, hugged, and bitten. He lives on chicken nuggets, some pizza, pretzels, Goldfish, yogurt, and, lately, chocolate. He likes Elmo, and he likes to paint. He can't sit still. He has few words, and shrieks instead. Not long ago, in the grip of a fever, he said his first sentence: "I'm thirsty." He still wears diapers. He will be seven. His mother and father have aged many, many more years than that. There has been no plateau." "That's what the story of Alex needs," people have said. "It needs some plateau." No argument. But the essence of the story, the secret of whatever power it contains, is that there is no end. There has only been his beginning. (June 2004)
Over a family brunch, the subject of the book Alex comes up. Aunt Julie, as anybody in their right mind likes to do, takes a poke at her younger sibling. "Why is Jill's picture in the book?" she asks me. "It's your book!"
"Because I'm Alex's mother," replies Jill, weeks later, "and I happen to be married to the pig-headed author." She may have come up with the lightning bolt of putting Alex's first footprints on the book's cover, but Jill might re-think her position as Author Stimpson's imagist.
She is pissy over the shorthand abbreviation of Pulse Oximeter, which I have apparently mangled in a book-length manuscript to "pulseox." Jill thinks this looks illiterate, and that it needs to be separated into "pulse ox."
I do some research and e-mail her what I think is a warm yet professional note spelling out my case for "pulseox." "I have been unable to track down a concrete spelling of the slang for 'pulse oximeter,'" I write. "Closest I've come is here-" I insert the URL of a site I think handles medical-transcription software. "This site says 'pulseox' as freely as it says 'neb,' among other terms we are all too familiar with. Again, the main point: There is, as of yet, no fixed spelling of the slang of pulse oximeter, nor is the term trademarked, which is often the reason common trade names are capitalized at all. I feel the hyphen is unnecessary, and capitalization an unneeded bow to the corporations that build these devices. 'Pulseox' as it is used in the book is conversational and familiar. I feel the presentation helps convey just how common these machines were in our lives."
"You know that site you sent me?" Jill counters that evening. "It says that that is the accepted spelling of pulse ox after first reference."
My point precisely, I tell her.
She pauses. "I want you to change it to, 'I happen to be married to the authorgraphically-challenged, pig-headed author.'"
Okay, though I can't find a spelling fixed or otherwise for "authographically." This is just part of the fun of proofing nearly 300 pages of your own writing.
The publisher e-mailed me a PDF last week of Alex, which allows me to get a jump on proofing the real galleys that should arrive in the next day or so. Proofreading the book is proving much harder than writing it, though, in the case of Alex, not harder than living it. How in hell did I manage to spell "x-ray" three different ways? Couldn't I make up my mind about "T-shirt?" The whole book has a breathless and shallow tone to it anyway, written by somebody who was in too much of a hurry to impress readers to get the story right and make it as rich as it deserved. Jill says she has "a good feeling" about the book. I guess it will do okay - but not unless I do something about all this botched-up introduction of family members, the clunky definitions of medical terms, and the misused commas.
When I get sick of proofreading, which takes about 15 seconds, I do productive things like Google the title of my book to see where it pops up. So far, it's stalled at about 35 entries, but they do include bookselling sites in Japan, France, Germany, and the U.K. Fuckers on Amazon have it discounted by a third. And don't get me started on free public libraries!
Publishing a book is a beginning, not an end: a beginning of pounding the bricks and keyboard in a way that the stereotype big-time author wouldn't deign to do. Luckily, this does provide me with a lot of things to do to avoid proofreading:
-Made a running "marketing list" of stuff to do, in a Word file Jill dubbed "Publicity for Jeff." Among the notes: "Hospital gift shops"; "Have input on press release"; "What about postcards and bookmarks?"; "Bookstore signings - Call them six to eight weeks in advance." (Note to New Writers: Working on this list is a lot more fun than proofing or writing, or for that matter even reading, your own book.)
- Using a dandy book on marketing books, which Jill steered me toward, I've found a Web site of every daily newspaper in the United States. State by state, I'm clicked to the papers' sites and cut-and-pasted some 300 names of book critics, feature writers, and medical editors from Washington Post to the Anchorage Whatever. I followed this up with about 50 names from weekly newspapers. Publicity is more important than advertising! According to the marketing book, I need a stunt. Something not too dangerous. No heights or spiders.
- I combed my card files and my memory to find anybody who won't throw the book information away, and passed on some 45 names and stuff to the publishers. They don't say it and neither do I, but many of our mutual hopes are pinned on an old family friend of Jill's who writes for The New York Times.
(Note for Publicity List: Go back to this essay and edit out "Anchorage Whatever" should book hit it big in Alaska.)
-I remembered to keep posting on my Web site. I like to think I will continue to dance with the one that brung me.
- I answered scrumptious e-mails: "Wow. The book sounds compelling. We do have a book page. Any chance the publisher can send us a review copy?" "Have your publicist send a press kit to me, and I'll see if I can find someone here to toss it to. I'm sure the books editor, Frank Wilson, is already on their press list. But it couldn't hurt to push it along myself. It might be worthwhile for me to propose it to our medical desk." "That's great!" "We'd be happy to help!"
And today, from the first person I know of to receive the galley (even before I did), a lovely lady from Indiana who was there from Alex's beginnings:
"OH MY GOD! THANK YOU, THANK YOU, THANK YOU for having the publisher send me an advance copy of the book! I have CHILLS! IT'S BEAUTIFUL. I just this minute opened it, so I've not read a word except for the letters that came with it and the cover. It's stunning and I'm sure the inside is just as good. I LOVE the footprints and I LOVE the design. I'm crying. I am so happy that this book has been born! I will read, I know, from cover to cover tonight. I love you!"
I love you, too. Now help me look up "authorgraphically." (August 2004)
To keep everyone up to date on how much fun it is marketing a book by a relative unknown, I relay this message from the diligent and admirably tireless publicity person at my publisher:
"Thanks for this new list. I will send press kits to all. Just to let you know, I sent out a handful to the men's magazines last week. A writer with Men's Health actually did a feature this month on his autistic son, so that may be a way in. We did send a press kit to the Times magazine last week...
"Thanks again for all your work. It's been very useful as always! Feel free to follow up. United Parenting Publications and Special Parenting did pass on it, however, so you can skip those. Everything else is in limbo, except for "The Early Show," which did also call and pass on it last week. As my mother used to say, at least we're being rejected by a better class of people!"
I didn't want to get up for "The Early Show" anyway, and when it was broadcast I wouldn't have been able to even tape it because Alex broke the thing that helps us do that off the cable box. And Special Parenting is not the real name of the publication in question.
"Why give them the extra ink??" demanded Jill. "Refer to them in fictionalized form. I was actually sitting here getting huffy about the rejection. How dare they!"
"Fictionalized form" might in some way describe the uphill sand-shoveling that my dedicated, tireless publicist is doing. Friends and well-wishers have assured me that Alex will have a core audience, but I - in whispered dreams of ultimate financial freedom -- believe everybody who was ever a kid should buy my book. (Even read it.) Maybe they will. My accountant said, when told about the book, "I look forward to upping your fee." That was nice.
Within a few days, and equally nice, came this from Kirkus Reviews:
"Journalist Stimpson debuts with a searing chronicle of life after the birth of his premature son. Alex would be a bundle, despite his mere 21-ounce size. Brought forth by Caesarian weeks before he was due because doctors believed he was growing too slowly, he took his parents through the full array of preemie ailments, problems that affected his breathing, eyes, and brain. Dividing his story into a series of months ("November and December, 1998," "February to May, 1999," etc.), Stimpson writes in a quick and saturated voice fueled by the transience of Alex's condition."
"What's a 'saturated voice'?" Jill asked.
Who cares?
"...Stimpson captures exactly what it's like to field the everyday fluctuations of a preemie's passage ... and readers will re-experience it too. Breath-catchingly evocative of live's elemental grace and messy dignity."
Well, thank you very much. There's some sand over the top of the hill! All my life I've wanted a review like that, though I'm not sure getting a special-needs son in return is a completely fair trade. It more than makes up, however, for that time in the late eighties when Kirkus Reviews turned me down for a job.
No more reviews have come in, but one's due this week. "From a ... good-sized source?" I asked my publicist, "or..."
"Oh, a good-sized one," she said. I didn't press her details, for the same reason I never picked too closely at the packages under the Christmas tree.
I did, however, attend a conference last week where I sold my first copy of Alex -- sort of, to a nurse from Florida who bought a signed galley as part of a charity auction. Then the next day, just before I was to read from the book, somebody handed me another galley to autograph. I gave out so many order forms, I had to photocopy more! In my lecture, a nice, nice lady called me a terrific writer - or great, or fabulous, I don't recall; I was a little dizzy - and proclaimed I could write about a doorknob and make it good. Heady stuff, enough to power whispered dreams of reviewers' imminent admiration and, soon, wheelbarrows of cash.
Yet still. Those guys did "pass on it."
"Maybe someday you'll get the back story behind that," says Jill, "because I'm sure there is one." Sure hope so.
(Afterward: Since this was written, a positive review has appeared on Booklist, and more reviews are expected soon from The Library Journal and Publisher's Weekly.) (October 2004)
The only thing worse than a writer who keeps talking about his writing is a writer who keeps talking about other people talking about his writing.
I just made that up! I think it's pretty good, except in spots where it's "mind-numbing" or where my "real-time journaling style (tests) the will of even the most sympathetic readers."
Those quotes are from Publisher's Weekly (646-746-6758 -- they like to be called at home between 3 and 5 a.m.), and what I guess you could, if somebody put a pistol to your temple, call my first and so far only negative review: "Stimpson's memoir of the first seven years of his preemie son Alex's life reads like a diary, often compelling in its immediacy, sometimes mind-numbing in its excruciating detail ... Life with a premature infant in the hospital was emotionally wrenching, and Stimpson's descriptions of the grueling routine he and his wife endured are heartrending ... Stimpson provides a vivid picture of life in a preemie's family that will surely interest other parents of preemies, as well as anyone planning a family, but his real-time journaling style ..."
I don't mean to be more prickly than is necessary, but is Alex compelling or mind-numbing? Does it test the will or rend the heart? I've been e-mailing reviews around, and C., a longtime reader of this site, opined in her review of the review:
"For this particular reader, I propose a comic-style version of the book ... I guess it's different for those who weren't there at the beginning (well, electronically...) and who have grown to love Alex ... Still, I was once a new reader, and I never had thoughts like that guy."
(THAT GUY...)
Other reviewers have had better manners. "Booklist" said I offered (I'm not offering it -- I'm selling it, for almost $24) "a compelling look at the roller coaster of emotions faced by parents with a severely ill child, the sometimes support and sometimes callousness of medical and social workers, as the parents advocate for the maximum care and opportunity for their child." The Library Journal said I got "right to the heart of parenting a premature infant ... Reading like scattered memories or loose journal entries, the book is insightful and honest but sometimes confusing. It will suit professionals or interested lay readers seeking to understand issues faced by the families of preemies; however, new parents of preemies would be better off with a more linear handbook. A good selection for larger collections."
One: New parents of preemies don't have a lot of time to browse in libraries.
Two: I can assure all reviewers that I also found Alex's first few years confusing.
Three: 'However' does not serve best at the beginning of a sentence or phrase when used to mean "on the other hand."
Four: All "larger collections" may call me at any hour of the day or night.
"'Linear?' Who needs 'linear?'" said reader Jenny. "That's like advocating the five-paragraph essay!"
"Great you're getting these advance reviews," wrote Blake Bailey, author of a terrific and long-overdue biography of novelist Richard Yates. "My LJ reviewer deplored my abundance of 'banal detail,' but thought the book was, on the whole, meritorious. I brooded about the 'banal detail' crack for weeks ..." Thank you thank you thank you, Blake, for brooding!
"It's almost like the reviewers have to say something negative," adds Jon, my longtime friend. "Way I figure it, if a book is going to sell, it well sell despite reviews. Not that the reviews of your book have sounded negative. They haven't ..."
(LIE! LIE! LIE! LOVE ME...)
"... Has anyone ever come up to you and said, 'I read a book review in the paper yesterday, and it sounds really cool, and I'm going to buy it?'"
Jon thinks I should read reviews only after the book in question has been out a long time, when I can coolly admit, "Yeah, yeah, I guess this clown has a point there. I'll think about it." Otherwise, he believes, I run the risk of contamination and second-guessing myself. I've decided I want to make a lot of money writing books, and hire Jon to keep my mind from getting numb. (December 2004)
"Where'd you find time to write a book?" people ask. Figuring that authors should be cryptic whenever possible, I replied, "The time found me." That sounds smart, although I defy anyone to say what exactly it means. I guess what I mean is that writing Alex was a matter of empowerment, and that doing it was somehow easier than not doing it.
They say that the terrorists and we Americans looked at 9/11 differently. To them it was an end, to us a beginning. Not to trivialize that tragedy, but publishing a book, I think, is a beginning. Now comes getting the word out, which seems slow.
A lot of big names have passed: "Today," "Oprah," etc. It looks like that Reader's Digestexcerpt isn't going to come off, despite the best arguments of a caring sub-editor. I do have two radio interviews locked up - my publicist at Academy Chicago must've written a terrific pitch letter - and NPR requested a couple of copies. But for all I know that was to steady a couple of wobbling desks.
On Amazon, I watch the numbers drop: 144,097 Amazon Sales Rank. 234,661. 301,968. 104,888 (a tease). Alex bottomed out on barnesandnoble.com this afternoon: 577,251. My book is seven digits from making me a living and earning me a professional freedom I haven't felt in 16 years. My book is sinking like a crippled sub. For now.
In the Manhattan Borders stores, which each started stocking four copies of the book right from the get-go (though in the bowels of the "Medical Narratives" department) I crouch down to the lowest shelf (talk about bowels!) and angle copies of Alex so browsers can spot the tiny footprints without bending over. If the shelf is too jammed so only the spine of the book shows, I pull one copy out until anyone coming down the aisle would be bumped in the elbow by Alex's picture on the back on the dust jacket. Once, I moved one copy to the non-fiction bestsellers' shelf. I've heard many writers pull this stuff; is it legal?
I haven't long. Already on Amazon, used copies have plummeted to $6 and change. Stores will banish the book to the remainder table soon. Every year, 170,000 new books are published, and my publicist has, for some reason, shifted to pushing Academy Chicago's spring releases. The other day, I heard about somebody who bought a used hardcover copy of Catch-22 for 20 cents. My book is not Catch-22. I also heard that Joseph Heller had to continue to work in advertising for an additional decade after Catch-22 came out. You can't buy much occupational freedom for 20 cents (still, what'd Heller do with the movie money?)
Speaking of such, there's a line in the movie Boiler Room, which is about salesmen, when head salesman Ben Affleck is trying to inspire a roomful of recruits. He says that all they have to do to sell is "act as if": act as if you own the company; act as if you're worth a million; act as if your next sale will come from your next cold call. Act as if those Amazon numbers are two digits, and headed for Number One.
Acting as if is, of course, how I got this far. At first I acted as if I had readers. Then I pretended to have publications knocking at my door. Then I pretended to have a book of Alex's story. Now, simply, I must pretend that the book is flying.
It is, actually, in specialized circles. Three or four groups are looking to promote it at their conferences. "Meet and hear author Jeff Stimpson" reads the flyer for the fall get-together of the KIDFoundation, which addresses sensory integration dysfunction. Alex has that in spades, and people are going to meet and hear me! And maybe like it! Maybe not, too, unless I pay proper attention to giving them a good talk when the time comes. I've tried to wing one or two of these, with the result being an hour at a mic with a kind of sensory integration dysfunction that made me want to evaporate.
The NY Daily News may mention the book in a feature about older preemies; my hometown newspaper, the Bangor Daily News, may also do a feature. Strange to be talking to a reporter about how they heard about your book and hear him say, "Yeah. Your Aunt Freda called me." Go, Aunt Freda!
"Hang in there, man," write Mike F., from fatherville.com, a longtime supporter. "You told your story, and rich or not, that's what is important. Your story will help many preemie dads through the toughest of times."
Of course that will be, at bottom, the lasting value of the book, if it has one. And look at the bright side: Moby Dick made Herman Melville only $10. He had to eke out his days as a clerk in the U.S. Customs House in lower Manhattan. Today, the Customs House is the American Indian Museum, and you can almost see it from the window of the office where I work. (February 2005)
At the recent annual conference of the National Association of Perinatal Social Workers, in St. Louis, I spoke about "The Angry Parent." Here are some things that happened in a brimming 24 hours:
-I was about the only man at this conference. "The thorn among the roses," the waiter called me at lunch. At one point, I guarded the men's room while one attendee used it to beat the mile-long queue for the ladies' room. On the bus the night of the big tour of St. Louis, the guide up by the driver spotted me. "We have one gentleman here. My hat's off to you, sir!" she called into her mike, and for some reason I started to take my Alex hat off. As the heads of about three dozen women pivoted on me, I rescued the situation by announcing, "Oh, it's like a high-school dream come true!" I have used that line before.
-A social worker, Angela (not her real name), was a preemie 38 years ago. Once when her parents sent her to the attic to find her birth certificate, she happened across another birth certificate for the person who would have been her twin sister, and who died in infancy. Angela said she's often wondered about what life would have been like with her sister, especially around the time her wedding. After my presentation, she said she wanted to get back home and ask her parents if they were angry 38 years ago.
-Another social worker, "Julie," related how she was bullied early in high school by a senior who "just decided" to kill her. One day, Julie's big brother called her out of class and escorted her to the parking lot, where the bully, Anne-Marie, was waiting.
"My brother said, 'You want to hit my little sister?'
"'Yeah,' said Anne-Marie.
"'Well, now's your chance,' my brother said," Julie recalled, her eyes widening. "'You can hit my sister just once. And after that, for every time you threaten my sister, I'm going to beat up your little brother!'" Anne-Marie reportedly kept to herself after that, but what a story of relationships -- Julie and her brother; Anne-Marie and her brother; Julie and Anne-Marie; etc. -- at once filled with intimacy and emotional distance.
-Jill has admonished me for "quiet" presentations, so I decided to spice up "The Angry Parent" with, well, a quiet opening. I said nothing for a few moments, until the heads of the audience began to come forward. I sat at the head table with my arms crossed, then announced, "You don't know what I'm going through. You don't know what it's like to have a kid in the hospital. You don't know what it's like to have your family and friends not know how to talk to you anymore..."
I rose, and spread my arms. "That's 'The Angry Parent,'" I said. How cute! Take that, Jill! Then I launched into about how Jill and I were never told much about what the social worker in our NICU did, and, due to cutbacks and overwork, we rarely saw her. I talked about some of the nasty comments made to us by NICU staff. I began to finish, and glanced at my watch. Forty-five minutes gone. My talk was supposed to be an hour-and-a-half.
Then a social worker from Philly asked, "Did you find out what the social worker did, or make any effort to get in touch with her?" This lady was a longtime member of the association, and was asking a question that expressed her true opinion.
"You're the parent!" countered one SW who for some reason was sitting in the floor. "It's not your job in your NICU to find out what your social worker does!" Discussion! Debate! Argue! Still a half an hour to go.
When it was over, one attendee dashed from the room, and returned a moment later from the book table, where stacks of Alex didn't shrink nearly enough, with a copy of the book for me to autograph. (On the last day, a copy was raffled off. "And this is signed by Jeff and by Alex, too!" the MC announced, to a room of soft "Awwww..."s.
I greatly misjudged the level of anger directed at hospital social workers. ("Julie" was one of many attendees once punched by an angry parent). "I have to apologize for underestimating the amount of hostility you face," I said to my dinner companions that night. "It's we to have to apologize to you," one of them replied, "for the question of our colleague!" I love this group.
I caught the airport shuttle next day with the lady from Philly. "Thank you for attending my session," I said. I heard her face crinkle, and could just imagine what she'd written on my session's feedback form. I told her the idea for a session next year with me and Jill, discussing how we stayed together through the NICU.
"It might be better to have a marriage counselor there, too," she offered, "or maybe another couple, just to get, you know, another perspective..."
After a moment of yet again being an Angry Parent, I saw her point, and envisioned a panel of me, Jill, another couple, perhaps a SW who's had a lot of experience with couples. (Cheaper than flying in a marriage counselor.) A big session, big enough for the magic word: PLENARY! Just one step down from KEYNOTE! Then these guys would have me back. They'd better, or I'll sic Anne-Marie on them. (May 2005)
(Jill again contributes this week's essay.)
When I was in sixth grade. I could play, quite well, the opening bars of the theme from the movie Exodus. On the strength of this I signed up to play a piano piece for some sort of recital. But not being able to read music, I never could progress beyond those early few notes.
I promised myself I’d finish it. I’d practice. I’d learn to read music. I’d get someone – my sister, maybe – to play the piece through and I’d just keep practicing. If I could hear the whole thing through, I’d figure out how to just memorize it, the way I’d memorized those opening phrases. I imagined myself playing this piece of stirring music to thunderous applause. I would be wearing something regal, befitting a new concert pianist. I imagined people asking me how long I’d been playing. “Oh, not long,” I’d say. “I just worked on it, that’s all.”
But I never could seem to get around to practicing or finding someone who would play the piece for me. There was always something more important to do, some book I couldn’t put down, something my mother had asked me to do, some play date that was more pressing.
On the day of the school recital, I dressed myself grimly in a dress of my sister’s (flowered yellow chiffon, pleated skirt, huge belled sleeves – but don’t tell her) and walked to school. Didn’t tell my mother or anyone that they should come and witness my performance. My name was called. I walked to the piano. I sat down. I played the opening bars, beautifully. Paused. Got up from the piano, and walked back to my seat. My performance had lasted about 20 seconds.
And that’s kind of how I feel now – since I told Jeff I would write something for his site but didn’t. And haven’t. Though I’ve tried.
I’ve also spent time not learning to read music but checking auctions on eBay. Playing Spider Solitaire. Cleaning the house. Going through the boys’ things. Collecting said things for a yard sale at my father’s weekend house and taking other things to the daycare center down the block. Thinking about what I might write.
But little actual writing has taken place.
Just like that recital, though, a moment of reckoning is about to take place. “You have that piece, right?” Jeff asked this morning, his eyes wide with some exasperation. I haven’t shown him anything yet. “Oh, yes, I’m working on it,” I assured him. I’ll work on it tomorrow, I thought.
"What’s it about?”
I blink at this. I wasn’t prepared for a grilling. What is it about? I’m working on (or at least thinking about) several things – a weird remark someone made to me about special education, an encounter I had with a woman who I thought would become my new best friend until she said something crazy about people having their own energy fields -- but actual work? Ulp. I sift quickly through the things on my mind and choose one I think Jeff will like.
“It’s about . . . Ned!” I say. I feel relieved to have an answer. Ned’s had a couple of scrapes in kindergarten, and we’ve laughed about them and thought about Shirley Jackson’s story “Charles.” Think it will be no problem to write about Ned.
There. I feel better. Now I can tell him I have more than 550 words written toward this piece. Actually 574.
I have to remind myself, during these days when I feel I don’t have any attention span beyond a crossword puzzle, that I’m capable of getting something done. I’ve met thousands of deadlines for homework assignments, academic papers, newspaper stories. Though maybe now isn’t a good time to bring up homework assignments, as my poor showing in junior high school and high school would clearly illustrate that I did not always turn in homework on time. Or at all.
I have always liked to imagine myself crisply efficient, rolling up my sleeves (wearing an ironed shirt), looking harassed but getting lots done, whether it’s homework or cleaning my room or organizing some crucial fundraiser. But the truth is I can spend a lot of time not doing very much. But don’t tell Jeff, since I am always telling him how busy I am and since he has a job he loathes that gets us our insurance policy, and here I am, making like a post-war housewife minus the housecoat.
What do I do all day? Let’s see. I make the boys’ beds every morning so their room looks tidy. I straighten the kitchen a bit so it doesn’t look entirely disheveled and as if no housewife is in attendance. Yesterday I did spend hours going through the house looking for yard sale stuff.
I do have a few rules, and one of them is not watching daytime television. (If I’m going to waste great swaths of time, I’ll read something.) I skim the New York Times. There, 832 words, almost there.
I have little cooking binges: Some mornings produce a batch of roasted eggplant, escarole sauteed with garlic, potato-leek soup.
When it comes to writing, I may as well be practicing piano. I would almost rather scrub kitchen counters. Since my kitchen floor is still pretty dirty, I guess I do have some limits. (September 2005)
Paperclipped to to the letter I sent to my publisher, dated February 25, 2004, is one business card, for Jeffslife.net. I have two cards now, one for this site and other for Alex. Back then I had one. My signature at the bottom of the letter has no mention of the first book. Why would it have then, as the letter is like a fading Polaroid of a moment I'd forgotten and must now remember. Time has come for another book. As Cousin Carol says, and she's been quoted by many, "Don't rest on your laurels."
I wouldn't call the sales of Alex "laurels," but I do have a book out there. Publishing a funny business, though. Stage one is before you're published, and they say you can't get published. Stage two is when the book is out, and they say it's bound to sink unnoticed. I don't know what Stage Three is. I hope it's nice.
In an attempt to improve the prospects for Stage Three, I've been stuffing envelopes with notices about Alex to everybody I can Google, from parent support groups, to autism and prematurity specialists, to sellers of special-needs books. In response, a few have written back. A few have also fed their wastebaskets and switched Spam filters.
A second book is needed now, and would fill several needs:
Complete two-thirds of a Lord of the Rings-type boxed set for holidays;
Produce more late royalty checks; and
Follow through on a story begun.
My publisher has expressed interest in a second book. They are, however, buried by manuscripts after getting a mention in a mystery writers' magazine that said they're interested in "unique" whodoits. "And of course," says my publisher, "everybody thinks the mystery they've written is unique because it's the only one they've written!" A few other publishers may also be interested. It's best I pretend that the proposal for the second book, which I'm entitling Alex the Boy, is going to be read much like the first: by people who have no idea who I am and who don't have time to find out before lunch.
Book proposals should contain a letter and about 50 pages of a first chapter. I have that, counting an introduction ("This is my second book..."). The story picks up in the late summer of 2003, with a "coping" class Jill and I took for special-needs parents and with a playground episode where Alex drank from a sewer puddle. The story ends somewhere I'll figure out later. Proposals should also contain a letter detailing:
Where to send my checks;
Who will care if Alex's story is followed through; and
Why Alex the Boy will star Viggo Mortensen.
The book will be about our family and how we're growing with Alex and with autism. Luckily, if that's the right word, Alex's condition comes with some facts I've picked up while speaking about my family and promoting the first book. For instance, one of out every 166 kids today is diagnosed with autism. There are few fathers' stories (more a rumor than a fact), despite great demand. I have become intimately familiar with groups that will be interested in this second book. I have a lot of stamps.
In summary, the trick this time will be the same as the trick last time: Convince the publisher that the author will do most of the work for them. Okay. I can immediately follow-up acceptance of The Boy (should I shorthand it just Boy? Alex2? ATB?) with a marketing e-mail notice to some 300 sources I've also collected while promoting the first book. Supplemental marketing, most of the stamps for which I'll have to buy, have the potential to reach hundreds more groups and individuals in the special-needs fields who, if they haven't read Alex: The Fathering of a Preemie (Fathering? Alex1? A:TFOAP?), are quite familiar with it.
That whole paragraph will be cut and pasted right into the proposal letter, I'll bet. That's not how book publishing works, but it is how getting further in book publishing works.
I have to go back through my files to other phrases to lift from the first proposal, such as "This story has wide appeal," "It's a story of hate, love, gratitude, envy, frustration, joy, and worry," and, of course, "This could be an important book." Not to mention unique. (April 2006)
I was scheduled to give a talk in Boxboro, Massachusetts (an hour northwest of Boston, not where the Patriots play -- I didn't know where it was, either) at 9:30 on a Friday morning. I planned to rent a car on Thursday night, leave before dawn on Friday and drive four or five hours, give my talk, then drive home in time for dinner. Tough on me in the sense that I would have got four hours' sleep, driven for nine hours in one day, and talked to an audience. Easy on me, of course, as Jill would have been with the kids.
I picked up Ned from his summer camp bus at 6, got to Budget at 6:45, got the car ("It's beautiful!" said Ned), and headed home. By 7:15 I was circling and circling and circling our Manhattan block looking for a parking space ("I'm getting sick," said Ned) when Jill came down with Alex to help me find a space.
"Why don't we all go?" Jill said.
"I knew you'd say no," said Jill a moment later, mistaking one question plus some doubt as equaling a cranky and uncooperative husband. "It was Anna's idea. She said, 'Why don't you all go, and leave tonight?'" Anna is our neighbor, who will later tell me that after suggesting this to Jill she spent most of Thursday evening convinced that I hated her guts.
Thing is, why don't we all go? Jill, it turns out, has resented the time I've taken off to speak at conferences while leaving her home to scurry after the boys. I've been trying to keep the trips to day-long affairs, and once even did such a trip to Orlando. I remember that after another trip, an overnight to Rochester that experience has since taught me could have been easily done in a day, Jill said, "A thoughtful husband would have arranged for a babysitter and a dinner out the night he came back."
These days, I want out of talks: a big audience buying lots of copies of Alex, a token fee for expenses and my appearance, and for Jill to not resent anything.
Accidentally being a thoughtful husband this time, I had the conference folder with me, so Jill dug out the cell phone and the hotel number up there in Boxboro where the Patriots don't play while I drove us all cross-town ("I'm getting sick!") so Uncle Rob could drop everything after a day of work and go to his garage and wrestle our second car seat out through his sunroof. I thought this was a pretty nice thing for Uncle Rob to do.
So, 90 minutes later, I have the experience of steering over the Triborough Bridge looking for the silver letters of NEW ENGLAND THIS LANE to shine in my headlights. I'm usually helping read the boys to sleep at 8:30; I'm unused to having access to headlights.
Between about 9 p.m. and 1 a.m. this night, however, I get a faceful of headlights, along with endless red ribbons of taillights and a detailed tour of the nighttime CAUTION ROAD WORK on about 250 miles of I-95. Jill and get along fairly well, though I do the driving and she reminds me how she resents the passenger's seat on road trips, with its incidental responsibility to hand the driver (me) chocolate, soda, sandwich halves, and about anything else the driver (me) might desire. Somehow Jill also got the idea that the Passenger Seat also comes with a right to input on directions and lanes choices.
"This is why I didn't want you to come," I snap at her at some point.
Thing is, I did want her to come, or at least now two weeks after the trip. I knew she'd resented the time I'd taken, and I'd wondered when or if the boys might be able to come along, when they could have some fun, Jill could have someone to help take care of them, and I could end my speeches by pointing to the back of the room and pointing Alex out, as if he were a prop.
Nobody came to my Boxboro talk, though one woman did drop by to ask advice on home-schooling her deaf boy. This was a home-schooling conference, close to Lexington and Concord, and that turned out to be important. On the showfloor, for instance, were booths and vendors you'd never see at a public schools conference: the booth with the toy flintlocks and swords, for example, where Ned parked himself. Alex settled at a table with a chess and checkers set and a board; he placed the checkers across the board, and placed the chess pieces on top of them. "Birthday cake," he kept saying, "birthday cake."
My appearance at this show had been the idea of Joe, a rep from a special-needs publisher and distributor. Joe believes in Alex, and has been a fountain of good ideas on promoting it. We all had lunch with him, and discussed all sorts of business things. Then we drove home, and got back in time for our respite worker to take the kids while Jill and I went out for a drink.
A fine model for how things should be, Anna. We'll test it again in early October, when Jill and I head to a paid weekend in Myrtle Beach to give workshops to Early Intervention providers, and the props come along to play in the surf. (August 2006)
Jill and I start by warming up. "Hi, I'm Jeff Stimpson, and I'm here with Jill Cornfield, and this is 'Today's Special'..."
Jill made up the name. She also got the idea of music: a few seconds of a jazz ditty from her iPod. Music is a key, she thinks. I think iPods are the key.
"...and today we're going to be talking about-"- And here one of us whips a heretofore secret topic on the other: sleep, feeding, sleep, stares from strangers, fun with Alex, more sleep, moving on. Sleep.
For a few years, Jill and I have been presenting in various cities and conferences our version of what happened to us, and continues to happen, to audiences of parents, social workers, and other pros in special needs. They often clamor for our opinions, and afterwards more than a few step toward the podium and shakes our hands and tell us they really, really liked our talk. In many of their eyes I see a fear to do this kind of speech themselves, and that's okay, as I've come to love audiences.
My thinking is that those social workers and other pros work on a budget - somebody's paying for the war in Iraq, and it sure isn't corporate America - and maybe it would be easier for them to go to their supervisors for $30 to buy an hour's worth of parents' audio files than $1,100 to go to St. Louis or San Diego. Granted, Jill and I don't come with a world-famous zoo or a view of the Mississippi, but surely there's some sense in my plan?
Podcasts are amateur radio shows downloaded into a computer or portable audio device, much like picture or text files. I don't know of too many parents doing them on special needs, at least regularly. As with many schemes throughout my life, much hinges on me imagining that I invented the idea. But whenever I do something worth the words, I e-mail a release to some 2,500 names I've collected through months of marketing Alex. When I e-mailed about podcasts, I got a couple dozen curious responses -- more than for any subject before.
So Jill and I sunk $15 into a mike from Best Buy, but it took us longer to find a cheap (see "free") app to download to make the recordings. We got one from Audible.com, and now one or two nights a week, after the boys are asleep, our voices paint pretty blue waves on the screen of our PC, across the dashboard of the software. We haven't figured out how to edit these sound files yet, but we have figured out that a half-hour of quality radio, amateur or otherwise, is a slippery thing.
"I'm not going to do this if you're going to be like that," Jill tells me (into a hot mike) after one of my purely constructive criticisms. "Don't make fun of me. Then nobody will listen."
The mike itself is a problem: It doesn't pick up from any distance -- though it does pick up the ice tinkling in our gin and tonics -- so we have to snatch it away from each other to talk. This kills the spontaneity that I believe could float us all the way, perhaps, to real radio, even though Jill sometimes thinks her voice sounds stupid.
"No," I say. "You're very good at this." She is, too, for the same reason she's good at presentations: She blends articulation with a subject close to her heart. She's less stagy than I am.
I am unsure how many weeks "warming up" is going to take, but we do start to structure our sessions. They're set at 20 minutes. The jazz plays for 15 seconds, then we introduce ourselves, and launch. We figure out that we both need to keep a notebook at hand to communicate silently with each other and to stay a few minutes ahead of the subject matter. We also watch the timer on the software dashboard, which tells us when we're nearing eight and 14 minutes into the show. Then it's time for a word from people we hope will someday be our sponsors: the publisher and book distributor Sensory Resources; the National Perinatal Association; or Brain, Child magazine.
"Tonight we're going to be talking about sleep. How we need it, how we lose it, and how we never get enough of it. Do you have anything to say about that, Jeff?"
We just saw Prairie Home Companion, and in one segment Garrison Keillor has to ad-lib about 30 seconds on the virtues of a sponsor's duct tape. "You're no Garrison Keillor," Jill notes, while I'm merely seeing if a podcast benefits from me saying "ummm" about 50 times. I tell her my opinion of her opinion. And I do it when the mike is off, too, because I am an imaginary professional. (August 2006)
(This is the last chapter of what I hope will be my next book. - JS)
Through the manuscript of my second book about Alex, I've scattered conversations that I fantasize between the grown-up Alex and Ned. Jill isn't even mentioned in these conversations, and she believes this stems from her being, at that time, dead.
The second book, Alex the Boy, is about my fears for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. All my life money has been running out for just about everything but the storefronts of corporate retail. "Nourish your hopes," said Churchill, "but do not overlook realities." Honestly, is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be? The book is about my fears as a man and as a dad, the fears of someone who loves his sons. These are just my fears; they're not necessarily what's going to happen or not happen.
"And I can think of nothing more fearful than a future without you," I say to Jill. That shuts her up.
The other day we were walking home. Alex was at his Saturday recreation program for autistic kids; Ned was at his program for the siblings of autistic kids. Jill and I had some time on this rainy mid-morning, and we were walking home to do that we always do when the kids are out of the house: sit on the couch and eat cereal and watch cartoons.
We live near Central Park. On our walk we passed benches, and about a block from our building, on one of the benches, sat a man. We're New Yorkers, and usually pay little attention to such men. I used to pay attention to them. The first thing I ever published, in 1987, that resembled my books in style and tone was about a woman who lived outside the loading dock of a Brooklyn supermarket. As the years went by, though, I wrote fewer and fewer stories about the homeless. You can't pay attention to all of these people and still survive. About a year ago, for example, a guy on the sidewalk asked us for money and we turned him down politely, and he said, "No love in your hearts, eh?" No? I guess I must have left it in the NICU, or in Alex's second hospital, or in Early Intervention, or in one of Alex's IEP meetings, or in one of the thoughts I have almost daily about my sons' adult conversations. "Well," Jill told the man on the sidewalk, "no love for somebody who asks us for money on the sidewalk then says something nasty, no."
But walking past the bench on this rainy morning, Jill said, "Do you have a dollar to give this man?"
I looked. He was a black man, well past middle age. He seemed to be meeting the eyes of passersby. He seemed to be saying something in the rain. I dug out a dollar and we walked over. His voice wasn't loud; he was hardly moving. When I handed him the dollar, he blessed us. His eyes did see me, but I don't know how much they understood. "Do you have an umbrella?" I asked him. He looked me with all his attention, but that didn't seem to be enough to understand what I'd asked him. "Do you have an umbrella?"
His head moved a little, and he uttered some sort of sound. I handed him my umbrella. I started some explanation of how the curvy handle was narrow enough to fit right into his belt-loops so he'd never have to worry about dropping the umbrella. In the shelter or on a bench, I thought as his eyes kept trying to understand me. Where do you spend your days? What ever happened to your parents?
"Here. You take the umbrella." He took it from me just as the sun came out.
Jill and I continued on to our building. "Who takes care of someone like him?" she asked.
I can look at someone like that and not help them -- I'd help more of them, probably, if I had more money -- but since Alex came along I can't look at someone like that without wondering where they came from. You don't seem to hear as much about the homeless anymore, but be assured that in New York they still rant on the subway and along sidewalks by the bushel, looking for love in somebody's heart, and they have ranted there for years, and it's beginning to look as if they'll rant there for years for come. They were all children once. They all came from somewhere; I'm finding it harder and harder to believe that all their situations began with drugs or booze.
Alex was five when the second book started. Now he's eight, and that much closer to being on his own in the world. I wonder what I'll think when he's out there without me, making his way. I know that the other night I hit the roof because his bus from his after-school program for autistic kids - which is conducted at his regular school and from which the bus usually pulls up about 6:30 - was nowhere in sight by 10 past seven. Jill was out for a well-deserved drink and dinner with a friend, and I ran inside with Ned and, alone, rooted for the phone number of the bus company. Failing to find that, I called the emergency number of the agency that runs the after-school program. After depositing a message with their answering service, I tried the cell of the woman who used to run Alex's after-school program and who now runs a similar program in the Bronx. I figured maybe she'd have the bus company's number. I wasn't quite sure why I didn't have it.
I was sure I could see Alex running, alone in the dark behind the school. Accidentally left sleeping on a bus. Ripping open packages of saltines in an upper Broadway grocery store and refusing to answer perfectly normal questions from the clerks. I could see him darting into traffic, under the streetlights.
Ten past seven became 7:30. I called 911. "What is the nature of your emergency?" the operator wanted to know.
"Operator, I'm not sure I have one," I said. "Maybe you can tell me. My son is eight years old and attends an after-school program, and he's autistic, and he gets home from the program at about 6:30. He's an hour overdue and I haven't heard from the bus company of the agency, and I'm wondering if I do have an emergency."
The operator assured me that I did - I think the word "autistic" did the trick again - and that a radio car from my local precinct would be by shortly to take a report. I began glancing around for a recent picture of Alex, trying my best not to rattle Ned, who was absorbed in Monsters Inc., and trying equally hard to not call Jill.
Twenty minutes later, Alex's bus pulled up; the driver said they'd had a breakdown. Alex didn't seem at all upset, and in fact he didn't even have to go to the bathroom despite having spent almost two and a half hours on the bus. Obviously the bus crew had taken care of him. I called off the cops, thinking maybe they'd be on my son's side sometimes after all.
I remain convinced, however, that law enforcement doesn't know that much about how to deal with the autistic, though the word does seem to perk up some cops (such as 911 operators or that TSA guy in LaGuardia). A hell of a good resource for parents of autistic children and professionals who work with them is The Schafer Autism Report (www.sarnet.org), a newsletter delivered over the Net. Every day you can open your e-mail box and read a compilation of autism-related stories: research, conferences, toxins, funding, Congress, changes in care and awareness. A lot of the news is about brushes the autistic and their families have with education systems or the law, or both. A teacher ties up an autistic boy who disrupts her class. Deputies count themselves lucky to have found a lost autistic girl who can't speak. Police cuff an autistic young man and take him to central holding. These stories mushroom.
One in every 166 kids now, they say. Could be more. Could be fewer. It does sound like one of those numbers we'll remember nostalgically someday. But still amazing, even considering that autism has always been prevalent, I should think, and for years has maybe just been called something else. Even if it does fluctuate, it will be a staggering number of people to care for and pay attention to. For a society that chooses to call itself compassionate, it looks like one big bill is going to come due someday. Nothing new there: a society that calls itself compassionate is used to having big bills come due. What I've noticed is not a lack of will to pay those bills, but a clear lack of will to pay such bills for a long time - like the amount of time Alex will spend as an adult outside my care. Maybe I'm wrong here. Hope so.
Yeah, so what do I do now? The money just isn't there to secure Alex's future - "secure" in the sense of how I feel about it, not secure in the sense of how it will actually be. There isn't even enough to secure Ned's. So we do what we can.
From the time Alex was an embryo the Internet has been for us a source of knowledge and networking, forewarning and comfort. Just last weekend, Jill found a young man on Myspace who claimed he'd been labeled autistic as a kid, who didn't speak at age four, and yet today holds a job and leads a normal life. And last Halloween, Alex kept trying to dash into other people's apartments when they opened their door at Ned's "Trick or treat!" "No, Alex, no! You don't live here, and they don't need you looking around!" On November 1st, Jill read on a Myspace autism group that Alex's behavior is not only common, but understandable. "It's weird, when you think about," Jill points out. "Somebody opens their door for you, but then you don't go into their house!" I can see where that would be weird, sometimes. Like much about Alex's behavior almost since the moment he was born, it makes a little sense if I can only snatch a moment to think about it.
Alex doesn't like his overnight camp. There's arts and crafts, horseback riding, counselors who'll climb right into the bunk with him if he cries at 4 a.m. "Alex, do you want to go to camp on Friday?"
"No!"
He is autistic, so maybe he didn't understand. "Alex, do you want to go to camp?"
"No! No!"
We wonder how much he connects with the other kids at camp. "Ned, what do you think of the other kids at Alex's camp?"
"They're worse off than Alex," Ned says.
"Why do you say that?"
"Because many of them are in wheelchairs and can't talk, and Alex can talk and isn't in a wheelchair."
The second book is much about Ned, the kindest 5-year-old I've ever known. I work a day job for a magazine that goes to accountants, and once I wrote a story about special needs trusts. These are funds set up to help people like Alex in their adult years buy non-essentials, like TVs or iPods. Often, parents set up the trusts and lay all responsibility for overseeing it on a typically-developed adult sibling. Bad move, advisors told me: Even if that sibling loves the special needs individual, the person that sibling marries might not.
I had Ned late in life; it's possible I won't see that other key person at Ned's wedding - though there are already an alarming number of bridal candidates, for this boy with many friends -- but I do hope Alex isn't there screaming and trying to watch "Elmo". I do believe that Ned will want him there. They have a pretty good relationship. Alex has stopped biting Ned, for one, though he does still smack him in the head from time to time.
Ned doesn't hit Alex back. "Ned," I ask him one night when he's taking a bath, "why don't you ever hit Alex back?"
"Because in our sibling shop they told us you should never hit autistic people back, because it just makes them madder."
Oh Christ. "Well Ned, in the first place, no one has any right to ever hit you without you defending yourself. And Alex isn't as bad off as some autistic siblings. You'd actually be helping him by defending yourself. Think about it. People in the world aren't going to just let him hit them without hitting him back. You'd be helping him learn that he can't do that."
I let that hang in the air, and Ned stares at the faucet and looks down at his Power Ranger as it bobs face-down in the water. The feeling grows that again I've somehow come up short regarding fatherly wisdom. "Ned, you know what? When Alex hits you, take both his hands in yours, look right in his eye, and say, 'Alex, do not hit me. I don't like it.'"
Ned promises to try that next time. Like much of my fatherly wisdom, we're just going to have to wait and see. (November 2006)
I've filled up maybe half the allotted 90 minutes with my voice, and I just can't seem to connect to this audience of some 150 occupational and physical therapists. They seem to want to laugh. "Oh well," I say, "if you're that kind of a crowd, I was going to remind you all again to put your cell phones on vibrate for my talk. Mine's on vibrate. I have it right here in my front pants pocket. I keep it there when it's on vibrate because I like the way it feels when somebody gives me a call." They laugh. "My cell phone number is in your handouts, by the way." They laugh again.
This is telling therapists what it feels like to be a the dad of a preemie and autistic boy? That's what they hired me for, the folks who've flown me to Alabama for a 90-minute talk to cap a daylong workshop by Carol Kranowitz, author of the bestselling Out of Sync Child series. Carol revs audiences. She makes them bend their elbows, sway in their seats, dance.
I spend most of my time - and have spent most of the last decade - on a day job where I feel no proficiency, where I invariably come up 25 minutes short. I thought the one thing I could do, besides write about my family, is speak about my family and take an audience home to applause.
How have I, after doing this for some five years, allowed Carol's crowd to go flat? I glance down at the podium, at my watch. Same way, I guess, that I'm going to come up 25 minutes short on this presentation.
"Are there any questions?" I ask. I'll give somebody $500 if they put their hand up.
Why did some of you come here today? What do you think about what I just said? These interactive questions I should've asked, I realize in the days afterward. When I got to the part about the neonatologist giving Jill bad news while standing over her, I should've had half the audience stand up and glare down at the person seated next to them.
"Ninety minutes is a long time to sit still and listen to one person talk," says Jill's cousin Susan, a speechwriter, whom I phone a few days later for damage control.
I was in Alabama because of Joe, a hell of a nice guy I met maybe five years ago while he was setting up the book-table at a conference in suburban Boston. Joe has convinced his boss David, who also seems like a nice guy and who was also in Alabama, to give me a shot on the bill. They flew me down there and put me in a hotel for two nights and took me out to dinner, and I all could wonder come Saturday morning, waiting in the pre-dawn for my cab back to the airport, was, How come I didn't do the right job for them in return? How did I fumble?
Why did some of you come here today?
As a speaker, I've had moments. "If you've come to sit in your seat, drink your coffee, and stare into space and listen to some guy who hasn't got one qualification to speak to you-" Pause. "-you've come to the right place..." I told that to a big crowd of NICU nurses last fall. They liked it. "I'm going to keep this short here," I said another time at a luncheon, "because we're running late, and we all need to get to the afternoon's workshops, and I really need ... to go to ... the bathroom!" Just the right pauses. Big laugh. Non-profit crowds, though.
Been a long time since I've had a professional curve ball when I cared about hitting the pitch. Overconfidence, perhaps, in 'bama? Before my talk, I walked the sidewalks of Birmingham quietly moving my lips - that gets more stares on the sidewalk in Alabama than it does in New York - to new lines, like the special thank you to those in the audience who bought my book, and about the photo of me on the dust jacket... I launched into something about how Cameron Diaz gets a lot of mileage out of looking just plain weird some years at the Oscars. But the tale ran too long, out of gas before its punch line. Like many stories in my life, I should've clipped it after "... and it was all Jill's fault!"
When I got back home, I debriefed: "This didn't get that much of a laugh"; "I began to lose them right around here"; "Only used this because I was running short"; "9/11's not a good anecdote - too charged." Susan says I need a full 90-minute presentation - about 20 16-point, single-spaced pages; in Birmingham I had 13 - that can be cut depending on what time I need to fill. I resolve to buy a digital recorder, and to rehearse in front of mirrors, like Churchill. Use a lavaliere mic. Always always always mention the podcasts!
"You didn't let me down," Joe said. Nice of him. A month ago, I was hoping for that. Now I'm hoping for another chance. (May 2007)
Picking through the debris of my publisher's turning down Alex2 has carried me into the new year. Among recent activities:
The Nedcast. A few weeks ago, Ned decided he wanted to voice his own concerns and insights about being related to an autistic child. We recorded it sort of on the fly, or actually on the couch, while Jill was napping, using the MP3 player/recorder that Ned got for the holidays. Jill and I have been meaning to try this, which is more relaxed than sitting rigidly at the computer and leaning forward to speak into the desktop mic. Ned has garnered more listeners in a week that some of our casts have in a year, dammit, from all over the country and all over the world, including from Spain, Sweden, the U.K, and China. "China!?" he marvels. "They don't speak my language!" Somebody does.
Marketing podcasts and other developments differently. Instead of just Bcc'ing the some 1,000 e-contacts in my file (a practice that has drawn from my e-mail provider a rebuke unrivalled since the days of Principal Mitchell at Vine Street Elementary in 1972), I now intend to mine Autism Speaks. They have an online directory of services broken out by subject (funding, sibshops), allowing me to target better and avoid having a couple of guys with baseball bats and pocket pen protectors showing up at my door.
Revamping this site. Little shakes me up as much as logging on to a site I've visited many times and finding that some guy has set aside his baseball bat and changed what I liked to look at. This place has looked so 1998 that now it's actually retro-cool. "It's ugly," says Jill. I suppose it is that, more than an island of Clinton-era clarity amid an Java sea of Flash Players. A little color wouldn't hurt, much as in life itself.
Finding a new publisher. I wouldn't have published Alex2 either, I guess, a book of five years of story written in three years. "It's just as hard to get your second book published as it was your first," notes my friend Jon. So I'm working on the next cover letter:
"To reiterate the marketing potential, one of out every 166 kids today is diagnosed with autism. They - and their parents - live a life much like mine and my son's: a daily struggle to notch the simplest of accomplishments. Eating. Dressing. Making friends. Sharing a life with a society that's often more comfortable with autism in theory rather than in reality. How such a boy grows up, and how his family grows along with him, is the core of Alex the Boy, sequel to Alex: The Fathering of a Preemie. Through marketing Preemie, I have done media interviews and spoken at the conferences of many groups that will be interested in this second book, including..."
I took this free tele-seminar a while back during which I learned you need a "platform," or a network of various media to convey your story and brand. I have the site, the book, and Ned talking into his MP3 player. I've learned that signing up for a free tele-seminar brings to your e-mailbox a lot of stuff you never want to read. Where are the guys with the bats and the protectors when you need them?
Finding an agent. It's time to take things up a notch. Besides, I'd love to have some peeps.
Re-writing the second book. "What's the point of this book?" has been the nagging question that keeps popping up among those who've read it. And what is the point? This (my fears for Alex's adulthood) needs to be sharpened. "It would also help with the publisher if they can smell some kind of danger," notes Dear Reader C., "even if to their disappointment we are not talking about potential dead bodies."
Out came all that padding about how I wrote the first book; nothing smells quite the same as a writer talking about his past writing, especially on a hot day. Out came much of the stale reference to Hurricane Katrina. To punch up the kaleidoscope of "information" available today to parents of the autistic, I'm going to kick off each chapter with different quotes from research sources, depending on the theme of the chapter.
Some have suggested diluting the sarcastic tone. This I refuse to do. (January 2008)
The end of this essay contains a passage that I hope will be in the afterward of Alex the Boy, my second book, now in the making in that there's one publisher who hasn't come out and screamed, "No!"
I wasn't too far into Boy -- by which I mean I hadn't cut and pasted too many of the chapters together from my essays on this site; my whole literary career could be summed up in the phrase, "CTRL C, CTRL V" - before it struck me that this story was going to be a lot different than my first book.
For one thing, no institution loomed over our lives. In the hospital setting where Alex spent his first year, something happened, a decision was made, and something else happened based on that decision. There were medical professionals to paint as villains, heroes, or something in between. Alex's steps were defined and lent themselves well to chapters.
Alex is in a hospital no more. Hooray, of course, but it's a bitch for assemblying a book. "You used to write about being in the hospital and about the diagnosis of autism," Jill points out. "In this book, you'll just be writing about life." Very nice, but harder to sell.
"Just a diary, really," read one rejection, one of the few that bothered to add anything beyond the form letter. I wouldn't want to be accused of trying to force just another diary on Barnes & Noble, so I started rooting through my roots as a fiction writer (unpublished: "Just a crappy story, really...") for tricks of italicized prose to glue Boy together.
One trick I hit on was imaginary conversations between Alex and Ned as adults. Alex was obviously in some sort of heavily-assisted living situation, and Ned often talked about visiting him with his own family, and about becoming increasingly aware that Alex is slowly building a social life of his own. "Cut these," recommended the editor who hadn't screamed No! "They're implied."
I start every chapter with passages Googled ("CTRL C, CTRL V"!) about the particular autism problem the chapter deals with -- eating, sleeping, socializing - generally cribbed from somebody's newsletter or site of autism information. These will likely never see print; getting the rights and permissions would mean a sandstorm of e-mails.
But one trick might see print is the opening of the afterward. I like to write like this, third-person omnipresent narrator. Much more than that, it's a big, big daydream of mine:
"Autism today is quite rare, but the epidemic ran almost unabated until the mid-21st century. The financial costs alone were staggering. School systems, to cite one example, were spending up to $20,000 per academic year to educate autistic students even as the numbers of students diagnosed with autism continued to mushroom. By the mid-21st century, American healthcare, educational, and political leaders recognized the emotional strain that autism had on families as well as the financial one it placed on society in general. State and national educational programs began to bring autism to light as acknowledged condition, much as similar programs and education had done for mental illness in the latter half of the 20th century. In one example, volunteers found several dozen diagnosed autistic among the population of homeless in one major U.S. city and soon helped to find shelter, permanent homes, and even jobs. Soon after, United Nations doctors hit upon a formula of drugs and therapy to stem most of the symptoms of the affliction, and by 2062 neurosurgery pioneered in Europe - and which netted its developers the Nobel Prize - produced telling effects on alleviating many symptoms, soon with minimal risk. Hundreds of thousands of people worldwide who might have been condemned to live out their lives with autism were, in the words of one patient who later wrote a bestseller about the experience, 'freed as if the prison door had suddenly and miraculously melted off its hinges.'" (April 2008)
"Prolonged illness or employment at a make-shift job which offers no reasonable chance for advancement results in a spirit of restlessness and sullen discontent, or else a feeling of dull hopelessness." - Philip Dorf, Visualized American History
I was supposed to have turned a corner on my career by age 46. I'd have agents, a movie nibble, another book on its way to Barnes and Noble. This does happen: I have an old college friend who has his third book coming out, a murder mystery. "Easier genre," says Jill, and that's true, but I bear him no ill feeling. He's worked hard, and deserves it. And that's a common condition, if you get my drift.
I should've been tipped off on my career by that test in high school. I filled in tiny ovals with a No. 2 pencil, and when I matched my answers to some kind of wizard sheet that the teacher handed me with a heavy look, I saw that according my pencil-filled ovals I somehow preferred cyclical occupations to those that offered clear steps of advancement. To this day I'm unsure how they reached that conclusion or what doesn't qualify as a "cyclical occupation" when gas is $4 a gallon, but all in all my future, according to this test, was as clear as anything in high school.
Clear too is the silence I'm receiving from a would-be second publisher. This editor promised weeks ago to recommend the book to her small house, and had me run all sorts of numbers off Amazon on how autism-related parenting memoirs move. Then nothing. Alex the Boy, she had assured me, didn't even that much further work. And though of course she may still be planning to recommend it, she hasn't responded to e-mail. This is an apparent rudeness inspired and facilitated by the Internet; I've weathered it many times since starting this site 10 years ago. I suppose could call her, but I've learned that this doesn't net an author much unless he enjoys chatting with answering machines.
"Oh Jeff, you have to have an agent," an author (who once hit 200 on Amazon) told me years ago. I've never had an agent and never trusted the concept. People grow up thinking, "I want to be an author" or "I want to be a publisher." Does anyone grow up thinking, "I want to be a literary agent"? I've always thought agents popped up when you didn't need one.
Again I've opened the Writers' Market, and again I see what agents and publishers claim to want. Include this in your letter to us; make sure you let us know that; enclose the self-addressed stamped envelope; use a No. 2 pencil. Yeah, well, I've been polite and professional in my correspondence, and it's taken me only to this corner of my career. So I'm going blunt: I'm scared for my son's future; a lot of people are scared for their kids' future with autism; if you're interested, call me. Here is no SASE. An agent will either get this mood or he won't. If he doesn't I don't want him touching my manuscript. I'm sure I'll get back admonishing letters.
I'm seriously considering self-publishing, the last refuge of the scoundrel and a path I never seriously considered I'd have to take. But I'd like another book out by not far into the looming college fall semester, along with a study guide to offer professors of special-ed. I bought one self-published textbook in college, written by a professor who apologized for the price the campus bookstore (right!) had put on the book (about $26 in 1984 money). Maybe I'll charge $26. Besides, I can always keep marketing the book to publishers even after self-publishing.
"I think you'll find that once a book has been self-published, no publisher is going to want it," says Jill, but she's guessing, as I am, both of us brought up on one model of business that seems in this era of rudeness as outdated as a No. 2 pencil. I hope. (May 2008)
"There are two major hurdles for Alex the Boy," says the editor who pitched my second book recently to her house. First, she says as gently as possible, are the sales of the first book, which is "unfair" given that the second book stands to gain "a broader audience." Second is that the publisher, whom the editor termed "the perfect" potential reader for Boy, felt he couldn't connect with me. "He felt that you didn't make yourself vulnerable enough." It's also recommended that I more-carefully build my relationships with Jill and Ned.
(This was a nice note, I think, which took time to write from a professional who's not going to make a penny on Boy. I got another sweet one from an agent, both notes being prefaces to "No.")
I feel vulnerable. Besides writing that my biggest fear is that my son may die on a park bench 40 years from now, I'm unsure how to make myself look more vulnerable. And should I at all? I ask readers.
"I don't think that making yourself appear more vulnerable is what you're all about," says one reader of this site. "Exposing your underbelly might seem like, 'Okay, now I'm showing you how sad and angry I can be!' I say run with your strengths."
"Well obviously he's not the perfect reader!" says Jill. Adds my brother Lee, "It doesn't sound to me like he really wanted to like the book, more that he's looking for something to address in his own situation and didn't, for whatever reason, find it. Can you do what they want and still maintain the primary message, which is Alex and his development, while inserting some of your own vulnerability and allowing the publisher to 'connect' with you, whatever that means?" My friend Jon in Buffalo wants to talk about this over a couple of six-packs.
I too get the feeling that this publisher was looking for a different kind of autism book, maybe one with a cure readers can send away for. He was looking for a dog book; I wrote a cat book.
"I wonder how the book would be received by a publisher looking for a book, any book, and not a publisher with some fuzzy preconceived personal notions about the topic," wonders another reader. "This reader, on the topic of Alex, whether it's Alex the preemie or Alex the boy, loves seeing Alex growing, struggling, achieving through your essays -- I cheer for his successes -- and that has nothing to do with Jill's patience or your guilt. It has to do with Alex being the hero in his own life."
Themes are emerging: One reader called the bulk of Boy "bleak." Another echoed that he couldn't connect with me. On one level, I may have some serious typing coming this fall.
On another, there's selling the story at all. This recent turn-down and the earlier one from my first publisher has undeniably stolen some wind from my sails, almost to the point of wondering if the book-publishing world I grew up even exists anymore (it doesn't!), and if I should continue flogging the would-be middlemen. Jill and I have been noticing the thin, shiny paperbacks on our shelves, books on subjects like organizing and that look relatively cheap to mail to professors and their classes during the '08-'09 academic year. I wonder how much one of those costs to make? I wonder how much 5,000 of them cost to make? And remember in the 1970s, when books had glossy ads in the middle of them? Whatever happened to that? I sure wish I hadn't already told Ned that Alex the Boy is going to be dedicated to him.
"I guess that's the message," says Lee. "Don't throw away the drawing board." Or the six-packs. (June 2008)
(This is a draft of an essay that might soon run in the newsletter of the organization Preemies Today. - JS)
I'd given a talk about Alex, my former preemie, three years ago. My brother attended, and later we talked about how my time in the NICU was fading. "Maybe," he said, "it's time to move on."
I have a book out about Alex, another book in the works, a regular day job, a site of essays updated weekly, and a podcast about Alex, who's 10 now. There's no end of material: he's autistic, eats a wacky diet, weighs about 50 pounds, bolts from us in public, has fled our apartment in the middle of the night, and still loves Elmo. Sometimes he says a sentence, but in general is so semi-verbal that it's like having another cat around.
"A few more weeks," they kept saying in the NICU. It would be more than 11 months and a second hospital, all the time feeling arrested, my wife Jill and I hearing the laughter at the nurses' station, seeing the weekenders loading up their SUVs. If anything begged for a dad to find empowerment, it was our NICU stay.
"The aggressive questioning by you and your wife during Alex's stay in the NICU altered the course of his treatment to his detriment," said our primary doctor after Alex had been released at age six months, then readmitted to the same hospital's pediatric ICU in the wake of a lung crash. "I just don't want you to think," a nurse added once, "that you're ever going to have a normal baby."
I still don't know why people felt so absolutely free to say those things. I don't think it was because they thought somebody was writing it all down.
I'm a reporter. Alex hadn't been alive very long before I realized that what I was going through was at least as interesting as most of the stuff I'd written about. So I started a Web site, presenting to the world - and to parents who'd been caught in similar bogs - were his ups and downs, our feelings, comments of the staff both bad, and, eventually, good. Fingering his cast-off sock on his empty exam bed after the lung crash. Seeing him stop breathing on my lap. Watching him get a spinal tap with no anesthesia. Writing it down, unlike a lot that happened to him back then, at least didn't hurt.
Alex came home 54 weeks after his birth with a host of medical gear plus round-the-clock meds and nursing. I kept telling readers about him, and they kept listening as we juggled doctors' appointments, toured pre-schools and later kindergartens, and, slowly, all doubt about his having autism started to evaporate. I spoke at conferences about being a preemie dad, and as the months went by audiences always wanted to know how Alex was now more than then. True, they'd cringe at "normal baby," and at the tales of tubes and wires and about how his respirator made him sound like a 21-ounce Darth Vader. But they also wanted to know about chicken nuggets and Hebrew Nationals. Does he eat spaghetti? What happened when we left the apartment? More about what we hope for his adulthood than what we recall of his infancy.
Writing about the NICU helped me reclaim my life then, but more than that it prepared me for my life ahead. Doctors may try to help you, but they're not your buddies. Processing a blizzard of paperwork for a special-needs summer camp is a lot like shuffling insurance forms for intensive care. When they stare at him on the street, I feel them still staring at the 21-ounce G.I. Joe in his isolette. He is here and that's that. He wasn't normal then, and he isn't normal now.
Writing taught me to talk about that. The NICU taught me the first lessons in how to live with it. (July 2008)
There was supposed to be an essay here. I intended there to be, just as there's been every week - sometimes twice a week, for a feverish period there - for the past decade. But it kind of just didn't happen.
Lately these essays just haven't been the fun they once were to write, and I've wondered why, and also ruminated on the early expectations of this site. JeffsLife started in the spring of 1998 as an envelope-stuffing project while Jill and I still lived in Baltimore; I imagined then a modest but busy self-syndicated column to copy-starved dailies across the country. The daily of Marion, Ohio, did actually consider taking it on, but soon decided to just make a staffer do it for no extra money. I should've heeded that lesson.
Along came Alex, of course, and the idea morphed into what continues today: regular 700-word narratives on something big in the week, having to do with Alex or Ned or Jill or me, or, as Aunt Julie once put it, something "Jeff is complaining about this week." (Aunt Julie should write for The Comedy Channel.) I still envisioned some big publisher, perhaps Web-based, snagging the essays as a "graceful and gripping" (quote from a review of what eventually became my first book, which was stitched together from the essays) week-to-week story of a young boy with autism as he found his way in the world. BabyCenter toyed with the idea, but eventually turned me down.
For five years, the story lent itself well to the confines of 700-word narrative: decisions were made in the hospital, something happened because of those decisions, and budda-bing, another decision had to be made. I called it "the institutional tone" of the story, and I feel it hung together.
Then Alex left the hospital, thank God, and found his way further into the world, and though his early schooling offered some remnants of institutional style, overall the setting became life, with all its mixed-up chances and observations. The 700-word style no longer was quite as comfortable a fit: the tone became hurried, and when it came time to do a second book, stitching together essays fell short as a technique.
That at least was the take of my first publisher, who turned the second book down last spring with an e-mail that arrived at 5:30 on a Friday afternoon, making me feel like a complete afterthought. Another publisher soon expressed an interest, but seemed more keen on a cure book about autism, preferably penned by an expert who spoke weekly at big universities about the subject and hadn't even necessarily met a boy like Alex. That was what Jeff complained about that week.
Around this time, podcasts and speaking engagements to special-needs professionals also began to lose my interest. I don't know why. Maybe I was just getting tired.
A few smart friends plus my wife took a look at Alex2 and likewise began to wonder if the short-essay style worked. Maybe it didn't. Maybe I should've been writing a book of pontification on autism, but I wasn't, and I didn't want to. To me, the immediacy was still key. So I stitched together the essays by subject, Googled self-publishers, and have started pestering by most promising audience: grad students studying early education. Three professors said they'd love to see the second book, and have already booked me for their classes this semester. So it's on to stuffing envelopes for their colleagues. (Jill says the boys could help!) Trouble is, I'm still kind of tired.
So. "ugly" is how Jill continues to define the look of this site, which has changed little since Clinton's last year in office; there's no denying that it resembles that fake site the guy cooks up in that movie about fake reporting at The New Republic. So I'm thinking maybe of still occasionally doing an essay, keeping the latest half-dozen or so available, and otherwise using a re-designed JeffsLife to peddle the books. Plans are still in the air, but I do think it would all make me a little less tired. (October 2008)
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