CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5

Like all romantic entanglements, the reasons for their tensions—tensions, which eventually led the invisible rubber band between them to snap—weren't quite clear.  Or maybe they were entirely too clear.  Telling me about it, Shane struggled for the right words, but his meaning rang with the clarity of breaking glass.

"For a while, she was planning on moving up here to be with me, to be able to help out with all my stuff," he explained.  "She wanted to be the one that takes care of me.  And for an 18- or 19-year-old to be committing her life like that, it's not, I mean—when she asked me for the breakup I was upset, obviously, but I knew it was the right thing to do.  I can't expect her to give up her life for me at this point in her life."

I asked Shane the question he seemed, to me, to have been hinting at: Did she get flak from her family or friends?

"Yes," he replied without skipping a beat.  "Okay, that's another thing.  Probably like three or four months into the relationship, she started telling me about how her sister and the woman they live with [a close family friend/guardian], how they didn't really agree with her being with me.  I've met them, and they're not evil people.  But, like, for instance, once the woman said something like, She's not going to be able to take care of you and provide for you, and all that stuff.  Her aunt was also kind of against it and didn't really understand what she saw in me, because of the wheelchair.  It made [my now ex-girlfriend] so mad.  She was livid at them.  But I think honestly being around them all the time, like, some of their thoughts kind of slipped into her mind.  And she started to see their perspective more than she used to."

There was peer pressure as well.  "Her sister … has an able-bodied boyfriend," Shane explained.  "At their age they're running around having sex all the time.  They drink, they go out.  I think she sees that and even though she doesn't want to be that shallow, she also kind of wants to be a young person.  And I want to give her that."

 

            It forces you to mature fast—or at least it makes you act mature, whether you feel it or not—having a profound disability. 

Conversations about Inter-Abled Romance, part 3

"The first time I taught her how to lift me, that was like a big step in the relationship!  She was nervous but she wanted to try it, because we couldn't really be intimate with me sitting in the wheelchair," said Shane.  "So I told her it's fairly easy.  I don't weigh that much.  I kind of assessed that she was fit enough to be able to do it.  [It's] something I have to think about when I'm talking to new people.  I immediately size them up and figure out if they'll be able to lift me or not.  I don't have any type of lift device in my house or anything."

I asked if this girlfriend had any kind of experience with people with disabilities of any kind.  "None at all," he answered.  "She was in one relationship before me.  But no one who had a disability."

Though it was a new experience for both of them, in different ways, they managed matter-of-factly.  Honesty, open-mindedness, patience, and perseverance got them through.  "We were able to be intimate once I was out of my chair," Shane continued.  "I was 19, and that was the most amazing experience of my life.  It was different [for her], obviously, but she didn't mind it.  I was able to do enough on my own that it worked out."

But that's not the end of Shane's story.  As if in answer to my unspoken question, Shane told me that good sex alone wasn't enough.  "A few months later," he went on, "I was really thinking about us, and all that, and I realized that I didn't really connect with her.  The only reason I jumped on it was because she was the first person who really wanted anything more than friendship with me.  That was really tough.  I didn't want to break up with her if I was never going to find someone else.  I didn't know if she was, like, an oddball. … At first I lied to myself and said, Oh yeah, it's much deeper.  But over time I admitted or realized that she was not a person I enjoyed being around.  So yeah, I had to let her go."

He said his "conscience wouldn't allow me to be with her if it was only for the physical stuff."  Which struck me as a mature observation for a guy who was at the time only 19.  "She understood that I was young and inexperienced and didn't really know what I wanted yet," he reflected, adding that they still talk occasionally.  They're still friends. 

The woman was 22.  I began to wonder if an age difference was a key element to interabled attraction.  After all, ML is three years older than I am. 

Shane soon put me off this thought.  "My second relationship was kind of the opposite of that one," he said with a chuckle.  On his blog, he'd requested volunteers for a nonprofit video project.  "This one girl from Florida was one of the people [who responded] that I selected—and really it was completely business," explained Shane.  "We worked together that summer from a distance.  She stayed in Florida.  And we worked via Skype and texting and email and all that."

She was only 18; Shane was now 20.  Working together, they became close friends.  "Probably my best friend, I would say, that I had at that time [though] we had not actually met in person."

Even after the video project was done, they kept in touch.  "We Skyped every night, pretty much, and it got to a point where I told her that I liked her and she told me that she liked me, more than friends," Shane recalled.  "But because of the distance and some hesitations that she had about everything, including my disability, she just finally said I'm not ready to be in a relationship yet so let's just hold off.  It hurt but I understood and I didn't want to push her."

Then came a surprise ...

Conversations about Inter-Abled Relationships

Lately I've been toying with an idea for a new book.  The proposal is to explore relationships between people with severe disabilities and their able-bodied partners.  My assertion is that we enjoy a level of closeness that other couples, if they knew, would only envy.
 
Here's an opening salvo …

I Didn't Want To Break Up If I Was Never Going To Find Someone Else

So many terrific young disabled folks—of both genders—feel not just rejected but utterly overlooked and ignored in our sexed-up culture.  Today the battle cry of disability activists invariably includes the testy assertion, WE ARE SEXUAL BEINGS!  It's a tremendous leaden loneliness. And they're not wrong to want equal access to …  all things.  That's the ultimate litmus test of civil rights. 

###

To get an accurate picture of the current climate, I asked a young man with a disability similar to mine about his romantic exploits.  Shane Burcaw is a 22-year-old blogger and author of the young-adult memoir Laughing At My Nightmare.  As charismatic and funny as he is to read, his biography could give one a different impression.  He lives at home with his middle-class white parents and younger, nondisabled brother in suburban Pennsylvania.  He uses a motorized wheelchair and weighs just 64 pounds.  Like me, he was born with SMA type 2. 

To skip over the boring scientific parts about SMA, just scroll down a few paragraphs.

###

SMA is a broad diagnosis broken up into four distinct types, depending primarily on the age of onset.  Mine became evident when I was about six months old, which is on the cusp between types 1 and 2.  (Type 1, sometimes called Werdnig-Hoffmann Disease, manifests in infancy, even at birth.  Half the babies diagnosed at birth die before age two; their hearts and lungs become too weak to go on.)  At six months, I wasn't sitting myself up the way my older nondisabled brother had.  When I was put into a seated position I tended to fall over.  Doctors told my parents I'd never be able to cry very loudly because I lacked the necessary breathing capacity.  That, Mom concluded, was the first clue that doctors didn't know what they were talking about.

To be clear, spinal muscular atrophy is a group of genetic disorders with varying degrees of severity.  The latest statistics indicate that one in every 6,000 babies is born with some version of it.  SMA might not be noticeable at first.  Symptoms can strike anyone of any race or either gender at any age.  Or you might be a carrier and not know it.  One in every 40 people has the gene, or some 7.5 million Americans.  If two carriers sprout a child, the kid will be a carrier and has a one in four chance of actually developing SMA.  Which is why my siblings don't have it, though it tends to run in families.

The U.S. National Institutes of Health explains the cause of SMA as "a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement."

Everyone who has it is different.  In my case, the progression of the atrophy plateaued when I was about six years old.  That is, the rate at which I continued getting weaker slowed.  But—as I learned with great shock and a deep-seated sense of betrayal in my late-20s—it never stops completely.

###

Shane is palpably aware of the steady progression of his SMA—not daily, to be sure, but unavoidably.  I confess that, at first, I was turned off by his blog and book's implications (the blog bears the same name as the book).  The very idea of "laughing at my nightmare" doesn't seem to serve the cause of greater disability inclusion.  Don't we want to get away from pity mongering, the notion that we're ghoulish nightmare visions?  But now that I've gotten to know him and his work better, I've had a change of heart.  Maybe he's actually turning the stereotype on its head.  What's that old philosophy about how accurately naming something removes its power?  By turning his circus spotlight on that nightmare stereotype, he's helping lift the mystery and fear.

Shane's charm is certainly overpowering.

"Two or three years ago, I had never had a romantic relationship," he told me.  "I grew up with, you know, I had tons of friends, lots of friends who were female.  But it would never go any further than that.  I never pushed it with any of them because I didn't want to hurt relationships that were already perfectly good.  So at that point I was just kind of, like, whatever, maybe I just won't have a girlfriend.  Ever."

At that I didn't know whether to laugh or cry. 

To read more about my conversation with Shane, check back here in a couple days…

Part 40 of "Miracle Boy": Join the crusade!

Over the past few days, I've been Twittering (tweeting?) excerpts from favorite rejection letters of the past.

Why?

Gosh, I'm glad you asked!

I do this not to elicit pity. Let's make that clear from the get-go.

Rather, I'm posting the rejects because…

1) I think they're funny, with their pretentious self-importance, the way they struggle to say "no" ever so humbly and graciously (they never "reject", they "pass");

2) they illustrate the overarching, vexing conundrum--namely, What the hell do these publishing gatekeepers want anyway? Or: Why is it so hard to get my book published?

I'm not alone in this.  I know many, many struggling writers share a similar pain.

Some of whom no doubt suck. But many of whom are worthy.

I contend that publishers and agents often don't really know what they're talking about. To be fair, they're in a tough spot. Publishing is a profession both noble and storied. In that, it's a lot like the dinosaurs. Grand, but probably on the way out.

Look, many of these people want to be instrumental in putting great works out there but feel constrained by the bottom line. So they contort themselves in amusing ways trying to justify their existence.

There is a paucity of and desperate need for risk-taking. Or something like that.

Let's face it: You've read excerpts from my memoir (a new piece of which follows). My potential market would seem pretty vast: NPR is reportedly broadcast on 900 U.S. radio stations, transmitted to more than 150 other countries via satellite, and heard by countless more over the Internet; Americans with disabilities number some 50 million, not to mention their families and the professionals who serve them (one group, Friends of Spinal Muscular Atrophy, boasts 70,000 members!); the Harvard community is pretty sizable; and even readers of the financial magazines to which I contribute should figure into the mix.

So again I ask, What more do these people want?

Speaking of more, I'll post more rejection notes soon. Meanwhile, here is more MIRACLE BOY.

***

When time comes for me to take the S.A.T., Mother—as I've taken to calling her, to show my maturity—gets me tutored. She knows I haven't had Alec's academic training. Mom has become happier, except for the weekends of chemo- and radiation-induced nausea, during which she hides herself in her bedroom. She's become an item with a man named Bob, another writer and Harvard grad, like Dad. She's also working full-time at a small publishing house. Though she complains that it doesn't pay much, she insists she enjoys the camaraderie and intellectual stimulation. She's even trying to write her own book about having cancer. She says when it's published she'll take us to Europe.

For her, seeing me grow up and managing a degree of independence is a relief and a joy, she says. As if she doesn't want to leave this world worrying about me.

She doesn't even get mad when I tell her I was smoking with friends in the Park. I think she's just glad I have friends, have enough autonomy to be a little naughty. Fitting in has always been important to her. Being well socialized. Maybe it's a case of boys will be boys. But I knew she would feel that way, which is why I told her. I was almost showing off, like smoking with the guys was a badge of acceptance I had achieved.

It's very nice that Mother and I now have this kind of understanding and honesty between us. I'm glad I didn't "divorce" her and move to Stamford. The shrink knew what he was talking about!

When I at last take the S.A.T., Mother makes sure a proctor goes over my answer bubbles. I'm able to handle a regular pencil (or lightweight pen) and paper pretty well, but she's worried I don't press hard enough to make my answers register.

Soon all such standardized tests will be required to make accommodations like that for students like me. But at the time, we have to take accommodations into our own hands.

###

That's all for now! I need to write more. I have outlined the rest of the story, but I'll spare you that. Leave some suspense. From now on, let's talk about what we need to do to get this thing published. Really published. Old-school-style.

Hope you'll keep riding with me...

Part 36 of "Miracle Boy"

Welcome, new readers!  (You know who you are).

Anybody else in the disability community irritated by those anti-smoking commercials that feature gasping, wheezing, dried-out old folks as examples of what smoking can do to you--a fate worse than death?

I know they're for a good cause and all, so I hesitate to object. But to me the frightful images are offensive!

I mean, some of us look like that without having ever smoked … right?  Well, without inhaling, anyway. *Wink*

Maybe not me personally, but you get the idea.

At any rate, that's the germ of a new idea for an NPR commentary. We'll keep you posted.

Meanwhile, here's more of MIRACLE BOY.

****

That's okay. I'm comfortable.

After a week I'm still on an I.V., though. And a large, noisy ventilator, which I hadn't noticed before. Tubes everywhere.

God knows what all!

Machines beeping and buzzing … It's amazing I can sleep at all, and on my back yet! They're not all my machines, I gradually perceive. Some belong to my neighbors in the I.C.U. We don't interact. Maybe the families do, but not me. Mom and Dad might say a word to my roommates' visitors, but I pretend I'm in my own world.


One night the lights go off and on again. Nurses are suddenly swarming all around me. The head nurse is called in, though she's supposed to be off-duty. It's a blackout, they say. Indeed, the nursing staff is jabbering about it. I vaguely remember the blackout of '65. I was not yet three. It seemed Dad would never come home from the office. But he did and all was well.

So I'm not worried now. But my nurses are. Very. They pump a sort of football-shaped manual respirator into my trach. They check my pulse repeatedly. They check blood gases, which involves a painful needle into the muscles of my groin. They're relieved to discover my oxygen level is fine. The hospital has its own power generator, and soon my respirator is on again. It breathes for me and I become lazy. But I insist I'm fine. I'm not lightheaded. I'm not short of breath. At least I think I'm insisting. Mostly I'm smiling.

Soon the ventilator is removed completely, and I breathe on my own. I'm fine. Yes, fine. Always fine.

At times I'm even allowed to roll onto my belly, propped on a special wedge-shaped pillow. As long as my spine is kept in alignment, it's okay. With the pillow wedge, I can place my notebook down on the mattress and do a little writing.

One of my biggest concerns remains: Can I still touch my dick now that my back's straightened? (With my hand, that is—"reach myself," as Dad might put it.)

Eureka! I can! I can!

When the nurses remove the surgical catheter and wrap a soft, loose cloth diaper around my crotch, it enhances the experience!

***

After two months at Special Surgery, I'm transferred to a convalescent facility in Westchester County. I've been so cloistered, the glimpses of New York in August passing through the ambulance windows blow my mind. The city looks beautiful … absolutely mesmerizing and inspiring. I feel like a tourist in my own town!


A tourist who's strapped to a gurney, that is.


Sadly, the euphoria is temporary. Soon we're in the suburbs. By and by we arrive at Happydale, the institution I'll call home for the next three months. The very name conjures a shadow-gray sanitarium from an old horror movie.


I'm rolled inside and eventually parked in a large room with pale-blue walls and seven other kids. It's a downgrade from the I.C.U. Only one TV, for starters.


One of my new roommates, a young Black boy in pressed blue jeans and a tucked-in button shirt with yellow stripes, greets Dad, who is accompanying me on the trip, with a stagy formal bow. "Hello, my good man!" the boy says.


This kid is so animated and not post-op-like and, well, on his feet … the nettling question for me is, why am I in the same place he is?


In time, I learn the bitter truth. But for now, something else seems evident:


I am in the nuthouse!

###

Part 29 of "Miracle Boy”...goes to high school

Thanks to all of you who have written to me in response to this blog and other things I've done.

Thanks for voting for items below, and for my first YouTube comment.

(These humble entries are now receiving about 15 views per day, or close to 500 visitors a month. Not bad!)

My proposal is now in the hands of three or four book editors (I've lost count). I've published articles in each of the past two issues of Financial Advisor magazine, and a new one is in the works.

And NPR is awaiting my next commentary, which I'm hoping will run before the end of the year.

But of course, none of this is certain. None of it is money in the bank. Well, a little, but not much money.

In the manuscript segment that follows, we start the final chapter that's completed so far. Honestly, I'm wishing for a book contract to keep me working on it--so far, it's all been on spec--but I doubt not having one can stop me now!

Well, barring further development, here's the next installment . . . .


Dad and Barbara plan to move to a house in Stamford, Connecticut, where there will be room for the new baby. There is great excitement in the air. Barbara is pregnant! The house is being built! It's an opportunity I don't want to let pass.



I've always wanted to live in a house instead of an apartment. Besides, New York City in the mid-70s is depressing, dangerous. What's more, Mom's not as fun as Dad and Barbara, not as upbeat and adventurous. She's been struggling to find a job and a man she can stand. Only I put it in better words when I finally muster the courage to tell her I want to move out and live with them.


"Are you sure?" Mom asks. Then: "Have I been so—? No. Never mind. Um, won't you miss Alec?"


I haven't thought of that. Alec? No, I guess not.


Yet having spoken my fantasy I'm suddenly not so sure about it. Dad is able to do more with me than Mom, better at tending to my physical requirements. That much is true. Yet Mom is more emotionally supportive. Even now, she suggests I see a psychologist to discuss this.


Reluctantly, I agree.


She has in mind a specialist named Dr. Friend. Who could resist?

***

"You'd be crazy to move now!" declares Dr. Friend several weeks later, after I speak my piece. A genial fellow with tufts of silver hair framing ample ears, he sits in a big black leather armchair by the window of his elegantly furnished suite off the lobby of an apartment building on Central Park West, a few blocks down from home. Mom and Dad both promised he wouldn't tell me what to do, just help me make up my mind.


"Is—is that what you think?"


"Look, you're starting high school, which is big. Life is best taken a step at a time. Don't overwhelm yourself, particularly considering your upcoming surgery."


I don't want to think about that.


My scoliosis has become worse to the point of dangerous. The miserable back brace isn't working. I can only put off an operation so long. The sooner the better.


When my attendant picks me up at Dr. Friend's office and pushes me home along C.P.W. on what's turned into a blustery spring evening, almost immediately I decide to disobey the shrink.

Chapter 3: My unfortunate, life-changing incarceration

1976-1978

My first day at Steiner, no one is expecting me. Housed in a converted townhouse on East 78th Street between Fifth and Madison avenues, the school is like a disheveled Old World dowager. It's warm and nurturing yet mothball smelling.


I'm the first and only wheelchair student ever—pioneering, again—and nobody's checked if the elevator is working. It's very old and arthritic, we're told. Like at Walden, Dad has to jerk my chair up the front steps, but we're used to that. Beggars can't be choosers. Inside is another story. We hadn't reckoned on an elevator problem.


The tiny "car"—a cargo elevator, if ever there was one—refuses to move from whatever floor it's on. When someone at last finds it and manages to open the tarnished old gate, my chair doesn't fit inside. I'm about ready to give up, whatever that means, when Dad removes my footrests and finagles till my chair and I are wedged in. That said, there is no extra space for another person to push the buttons, which I can't do myself. So long-legged Dad vaults the staircase to summon the elevator to the third floor. Still the rust bucket won't budge, until—honest to God—someone kicks the door from the outside!


Needless to say, I'm now late for my first class.


All of which gives me plenty of time to size up the people I'm hurriedly introduced to.