Was this kid for real? I mean, I got that he wanted to make friends and that he’d been sheltered all his life, but what kid in their right mind would actually want to go to a public middle school? A kid with a disability, no less. Didn’t he realize he was in for a world of hurt?
Well, actually, no he wasn’t real, although the story was based on the real-life experiences of Paralympic athlete Josh Sundquist, and the book he wrote, Just Don’t Fall. I was watching a new family-oriented sitcom on the Apple+ streaming service. Called Best Foot Forward, it was about a kid with a prosthetic leg who’d been home-schooled all his life. At the age of twelve, young Josh decided that enough was enough and it was high time he got to experience the life of a normal soon-to-be teenager.
Gees, he acted like such an idiot – was I ever like that? Did he really think that his antics were gonna make him popular? Sure, any new kid’s gonna get extra attention as the ‘new kid in town’, but that’s not necessarily a good thing. Oh, that tumble where his foot came off? Talk about the big reveal! That was definitely not the way to blend in. Still, the kid was cute and kids are more than willing to overlook something like a missing foot when a boy’s good looking. With his prosthesis on, Josh was just another kid. In my wheelchair, I was anything but.
Yes, it just so happens that I’m a teen with a disability who’s been home-schooled all my life, and I too am thinking about going to public school. Maybe not this year but next, when I’ll be starting high school along with a gaggle of other freshmen. However that’s where the similarities end. Yeah, Josh had a disability, but his below-knee amputation wasn’t even visible when he was fully dressed. Hell with his prosthetic leg, he looked and walked just like any other twelve-year-old. Other than in gym class, no one would even know about his amputation. Josh looked normal.
On the other hand, just wait until Josh gets up close and personal with someone he likes. I’ve read that some pervs have a fetish for amputees, but most people are totally grossed out by the site of a stump. Imagine a girl putting her hand on his leg, expecting to feel soft warm skin underneath and instead feeling cold hard plastic? That’d be enough to creep anyone out. ’Course I’ll never have to worry about such things. No one knows that I, Simon Bash, have a major secret – other than the few of my Facebook friends that I’ve told. Wheelchairs aren’t exactly a turn-on for girls, and not for gay guys either – not even the geeky ones like me.
I know my parents want what’s best for me, but they’re deluded if they think I’ll eventually meet the girl of my dreams and live happily ever after. The truth is that if I meet the guy of my dreams, it’ll be because I really am dreaming. The way I see it, I’m doomed to spend my life alone, which is a pretty depressing thought. I have to admit that there have been times when I’ve thought of offing myself.
Suicide’s actually a big problem for teens like me, but let’s face it – actually doing away with yourself when you’re as spastic as I am isn’t easy. Driving my wheelchair off of the George Washington bridge might be dramatic, but I’d never be able to get past the railing. Driving my wheelchair out onto the Henry Hudson Parkway would probably do the trick, as would wheeling myself onto the tracks at the Riverdale Metro North rail station. The trouble is that I’d be putting other lives at risk, and I’d never do that. Let’s face it, I’m just too chicken to kill myself, no matter how much my life sucks. Otherwise, I’d’ve deliberately overdosed on my spasticity meds a long time ago.
Things weren’t always so shitty. I started out in life doing everything a boy’s supposed to do. That was so long ago that I barely remember what it was like to walk and run like other toddlers. I guess I looked normal then, but the wheelchair’s so much a part of me now that I hardly ever even dream of walking like I did when I was four. By the time I turned five, I was falling several times every day. I don’t remember much about my life before then, but I certainly have vivid memories of seeing a pediatric neurologist and going through a whole bunch of tests. I had so many MRIs – it’s a wonder I’m not permanently magnetized – and they probably took enough blood from me to transfuse an elephant. The worst of it was all the spinal taps. Those really hurt!
I went through years of testing and we even moved to New York, so I could get treatment from the best specialists in the world, but it didn’t help. It was a long time before I could even pronounce the diagnosis – hereditary spastic paraparesis – and it took even longer before I understood that I wasn’t gonna get better. I remember my parents crying after talking to the geneticist. I didn’t understand anything she said at the time and it’s only been more recently that I’ve had the knowledge to understand terms like locus, allele, and autosomal recessive.
The bottom line is that my parents were unlucky enough to have each inherited a defective gene from one of their parents. Because they still had a normal gene from the other parent, they’d’ve never even known about it except for marrying each other. Even then, the odds of them both passing the gene to me were only one in four. Although the odds of any siblings having the disease were the same, my parents decided not to take the risk. As busy professionals, they’d already put off having a second kid and it was an easy decision to put it off indefinitely. Besides which, taking care of me is hard enough as it is.
The cause of my disease is the lack an enzyme that’s necessary for breaking down myelin in the corticospinal tracts. Myelin is what makes up the insulation that keeps impulses flowing down nerve fibers and without that enzyme, old damaged myelin accumulates, depriving the fibers of vital nutrients while slowing conduction to a crawl. The corticospinal tracts carry nerve impulses from the motor cortex in the brain to the motor neurons in the spinal cord, controlling all the muscles in the body. I guess I should be grateful that I don’t have a motor neuron disease like ALS, ’cause that’s way worse. What I have is bad enough. Only about one in two thousand people in the general population carry my genetic mutation, and I’m only one in fifteen million people with the actual disease. Lucky me.
That said, hereditary spastic paraparesis, or HSP, includes thousands of different genetic defects that all have similar symptoms. It’s uncommon, but it’s not rare. The degree of disability and the age of onset depend on the particular defect. Some people are born with severe mental retardation and never even start to walk, while others don’t develop any signs of the disease until they’re in their teens or twenties, or in some cases not until middle age.
I guess I should be grateful that I don’t have any degree of mental impairment. I might not be able to walk, but I’m already doing advanced math and physics. My reading and language abilities aren’t too shabby either, even though I can’t write worth shit or use a regular keyboard. At home I use a voice recognition system, not only for typing, but for controlling my lights, my TV and just about everything else. It’s based on Amazon’s Alexa, but programmed to accommodate my unique needs. For schoolwork, I have a specialized keyboard that’s nearly twice as large as a regular one.
Because longer nerves are more affected than shorter ones, my legs are way worse than my arms. The muscles in my face and neck aren’t affected at all. The worst part of HSP for me is that, as the name of the disease says, I’m spastic. Not only can’t I move my legs voluntarily, but they sometimes jump and jerk on their own. Indeed, the spasms used to be so severe that they literally could throw me out of my wheelchair. Even worse was when I used to have wet dreams, ’cause those caused spasms bad enough to throw me out of bed. Talk about embarrassing! It was bad enough that before we installed a bidet in my bathroom, Mom used to have to wipe my butt, but imagine having your mom clean up your jizz? Those were wet nightmares.
I used to take pills for the spasticity, but like most medications, there were side effects. Tizanidine made me feel tired all the time, and baclofen made me feel so weak – I could barely keep my head up. The worst side effects, however were the ones I couldn’t see – bone marrow and liver damage – and those were the ones that limited the dosage I could take.
Nearly six months ago, I underwent a surgical procedure that eliminated the need for pills. A hockey-puck-shaped pump was implanted, just under the skin in my abdomen, and there’s a catheter that connects it to the spine. Because the pump’s programmable, it can supply a continuous dose of baclofen into the spinal fluid in my upper back, right when and where it’s needed, without any of the side effects or complications of taking pills. I can even adjust the dosage, right from my smartphone. The pump has been a life-changer; it’s one of the major reasons going to a public school’s even possible now.
Even with the pump, however, although I can move my arms, they’re still very unsteady, jerking every which way except where I want them to go. Speaking of jerking, jerking off is just about impossible. My plumbing works just fine as I discovered from all those wet dreams, but using my hands just doesn’t work. Thanks to the advice of one of my Facebook friends, I got myself a vibrator and I keep it where Mom’ll never find it. Now that I have the vibrator, I don’t have wet dreams anymore.
Not only do my unsteady arms and hands make writing impossible and typing nearly so, but I can’t even propel a regular wheelchair. Instead, I have a motorized wheelchair with a joystick and a computer controller that turns my jerky movements into a smooth, steady motion that’s usually in the direction I want to go. Unfortunately, I’ve rolled over my parents’ feet enough times that they don’t dare go barefoot in the house. I wonder how many kids in school would be so forgiving when I roll my wheels over their sneakers.
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With all time I’ve spent in doctor’s waiting rooms, I’ve done a lot of reading and one of the the books I read was a book by Stephen Hawking, the famous cosmologist who died from ALS. I was totally blown away by what he accomplished in spite of his disability. I went on to read a biography about him and then another, and I learned that his disability was even worse than mine. He wrote scholarly articles and taught at Cambridge for a number of years, long after he was confined to a wheelchair and unable to talk. He wrote books and scholarly articles and traveled all over the world, in spite of his disability. He couldn’t even breathe without a ventilator and yet he remained productive, long after the doctors said he should have been dead. I knew I wasn’t in his league, but I began to wonder if maybe I could do something similar.
I’ve always assumed I’d continue to be homeschooled, right through high school. Mom makes use of an accredited online curriculum, so I’ll earn a high school diploma, just like anyone else – but then what? Will I continue living with my parents, like, forever? If I continue to live with them after graduation, Dad’s health insurance will stop covering me when I turn 26. I won’t qualify for Medicare – not even when I turn 65 – unless I work. I was shocked to find that out when I looked it up. More importantly, do I really want my mom bathing and dressing me when I’m in my thirties, forties, and fifties? Will she still be able to lift me when she’s eighty? Who will take care of me when they’re too old, when they need home care or when they’re gone?
Most kids never stop to think about their parents as regular people or about just how much of a monkey wrench they throw into their parents’ lives, just by being born. In my case, it was more like throwing in a grenade. I knew that both of my parents were professionals in high-power jobs before we moved to New York, but I never realized just how much they sacrificed to take care of me. Mom had had a promising career in TV journalism, but she gave that up to stay home and be my full-time aide, teacher and homemaker. Dad had been a corporate attorney with the largest law firm in Branson and was on a fast track to make partner. His firm handled the dealings of most of the major tourist attractions in the Ozarks, but he gave that up when we moved to New York, taking a job with the NYPD.
Thanks to his success in handling the avalanche of lawsuits brought against the police, Dad quickly rose through the ranks to become one of the department’s main litigators. Most lawyers wouldn’t settle for the kind of salary the city paid, but most lawyers didn’t have a child with serious medical needs. Thanks to Dad’s job, we have health insurance that can’t be cancelled, no matter how high our claims. My medical bills are enormous and the city’s health insurance has covered them all, including the $50,000 motorized wheelchair I depend on and a van conversion that cost nearly as much.
Dad also has a decent pension, which is crucial, since my parents had to cash in their 401k’s when they bought our tiny house in Riverdale. It needed a lot of work before we could move into it, but even so, it cost more than the McMansion we had in Missouri. On top of that, we spent a fortune to make it fully accessible, with a long ramp in front, widened doorways and an addition on the side with a large bedroom and bathroom, just for me.
With Dad being the sole breadwinner in our household, money has always been tight. Dad does all the yard work, maintenance and repairs and Mom does all the cooking and cleaning on top of taking care of me. My parents never let on just how tight things really are, but if anything breaks down, Dad usually fixes it himself. Between our mortgage and the property taxes, we barely get by.
If I were to live on my own like Stephen Hawking did, I’d probably live in an apartment instead of a house, so there’d be no yard work, maintenance or repairs, but I’d need help with the cooking and cleaning. Mom takes care of all my personal needs, from bathing me to helping me to get dressed. With adaptive equipment, I could probably do some of that for myself, but living on my own, I’d still need a personal aide and that could easily cost six figures, annually. All told, the cost of hired help and personal aides could take all of my income, leaving damn little for the mortgage, insurance, taxes and paying off student loans – all the things I’ve never had to think about before. Could I earn enough money to make it?
On the other hand, what if I could get a job in New York City? Perhaps I could still live with my parents, at least for a while. Maybe I could be a college professor and teach and do research, just like Stephen Hawking did. I’m no Stephen Hawking, but already I’m beginning to learn college-level math and physics, in the eighth grade. By living at home, I could contribute to the cost of my care, pay for my own health insurance and save for the future, when I’m ready to live on my own.
Most kids don’t even start to think about going to college or about what they want to do in life until they're in their final years of high school, if even then, but reading about Stephen Hawking made me realize that perhaps I have a future. I know there are plenty of online degree programs, some of them from top universities. Not only could I get a bachelor’s degree online, but I could get an MBA, a graduate engineering degree, a masters in nursing or even a law degree, all from the comfort of my home. But then what? Stephen Hawking had the advantage of making it to graduate school before he got sick. I wouldn’t have that luxury. However, when he learned of his diagnosis, he nearly gave up on finishing his degree!
It was only because of the brilliance of his scientific publications that Stephen Hawking became known to the leaders in his field, and that led to the encouragement he needed to finish his dissertation and to go on to establish himself in the scientific community. That he had the devotion of his first wife probably helped as well – but they fell in love before he got sick. I wouldn’t have that luxury either. Hell, just getting a teaching job at a community college would be next to impossible if all I had was a degree from an online university. No, getting a teaching position at a top university meant getting an undergraduate degree and a Ph.D. from top universities.
Realizing that an online degree would never be enough was a true epiphany. To get people to look past the wheelchair, I need to be better than everyone else and for that, I need to go to an Ivy League school or at least a top-tier university, just as Stephen Hawking went to Oxford and Cambridge. However, could I even get into an Ivy League school with a homeschool diploma? Probably not. Could we afford to send me to an Ivy League school? Could we afford not to? There have to be programs for people like me. Going online, I discovered that indeed, there are a number of scholarships tailored to kids just like me.
Not only that, but a kid with severe disabilities and top test scores like I have is a bit of a hot commodity. Schools like Harvard are thrilled to be able to tout their diversity by showing off their accommodations for kids with disabilities. But fuck, the thought of going away to school scares me shitless. With luck, maybe I could get into Columbia or NYU and still live at home, but would I turn down a chance to go to MIT or Stanford? If I end up going away to college, wouldn’t it be better to start by going to a regular high school while I still live at home and have the support of my parents? Not only that, but going to a public high school would prove to prospective universities and to me that I’m capable of attending classes, in spite of my disability.
Fortunately, the New York public school system has some of the best high schools in the world. There are eight elite specialized high schools that are as good as any private high school and if I could get into one of those, it wouldn’t cost my parents a dime. Of particular interest is the Bronx High School of Science, which is known for its impressive list of alumni that includes eight Nobel laureates – more than any other secondary school in the world. Conveniently located nearby in Bedford Park, I could get there by public transit on the Bx10 bus, which is wheelchair accessible, in just over a half hour, door-to-door. In a pinch, Dad could even drive me to school in just ten minutes. However, Bronx Science is tough as hell to get into.
There’s an entrance exam for all of the specialized high schools that’s given to eighth and ninth graders every year in the fall, with the results announced in the spring. Only about twenty percent of those taking the exam get into one of the specialized high schools, but I’m determined to be one of them. I downloaded some practice exams and they seemed pretty easy to me. Ranking Bronx Science as my first choice wouldn’t guarantee me one of the limited number of slots, but if I do well on the exam, given my special needs, chances are in my favor. Unfortunately, my experience with homeschooling has taught me that nothing is as easy as it looks.
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I brought up the subject of my plans for the future at dinner one night in July. The resulting fireworks were memorable – certainly more dramatic than the Macy’s fireworks on the Fourth. The discussion lasted well into the night as the dinner dishes sat on the table, becoming encrusted with the remains of the evening meal. I wasn’t prepared for the vehemence of my parents’ reaction, nor for their shock at hearing that I’d even consider going away to school, much less pursuing a career. In retrospect, we’d never talked about such things and it soon became clear that my parents’ avoidance in discussing my future had been deliberate. Even with all the talk about how I could accomplish anything if I put my mind to it, apparently that never was meant to apply to living on my own.
It took most of the evening to get my parents to admit that they worried about how I might be devastated by even minor setbacks, let alone how I’d react to failure. They didn’t want to see me set myself up for what they saw as inevitable disappointment. Mom and Dad had absolutely no idea just how determined I am to succeed. Repeatedly, I assured them that if I tried and failed, I’d try something else. As I put it, it’s better to take a chance on success than to guarantee failure by not even trying. Reading about Stephen Hawking showed me that no matter how severe the disability, the only limitation on my potential is the one I impose on myself. That seemed to get to them.
Slowly, I won them over with my carefully thought-out plan. If nothing else, I was persistent. My parents weren’t used hearing such a serious, thoughtful discussion coming from their fourteen-year-old son. In the end, they agreed to at least let me try to get into Bronx Science or one of the other specialized high schools. We’d deal with failure only if and when it happened. In turn, they assured me they would support me in whatever I chose to do, but that no matter what, there’d always be a place for me at home.
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With Mom’s help, I spent the rest of the summer and much of the fall preparing for the Specialized High Schools Admissions Test, or SHSAT. I was used to year-round homeschooling, so that was nothing new, but the drills certainly kept me on my toes. All my life I’d been required to take test after test to gauge my progress in school, but I’d never had to second guess the test itself. With the SHSAT, a difference of just a percentage point could make the difference between getting into my first or second choice school, or getting into any of the specialized high schools at all.
I never appreciated how much of a strategy there is test taking. Often, there’s more than one right answer, or no right answer at all. The key is to choose the one best answer, and that often means second-guessing the question writers. Because there’s a time limit, it’s important to avoid getting bogged down trying to answer the hardest questions. Better to skip those and come back to them if there’s time than to run out of time before answering the easy ones.
Even with all of the preparation, there was no getting around the fact that my disability would affect my ability to take the test. Thanks in large part to Covid, the rest of the world had moved to the use of computerized test centers but New York had yet to make the transition. We still used paper test booklets, paper answer sheets and number two pencils. There was no way I could fill in those tiny ovals on a computer-scanned answer sheet. My hands just aren’t steady enough, even with the baclofen pump.
The instructions made it clear that accommodations would be made for any kind of disability, but we couldn’t request an accommodation until we applied for the exam, in October. When the time finally came, we requested that I be allowed to bring my tablet to the exam, so I could enter my answers onto a spreadsheet, from which they could be transcribed onto the regular answer sheet by a neutral third party. The testing board, however, had concerns that I’d be able to use my tablet to look up the answers online or to otherwise cheat. Apparently, the argument that the tablet wouldn’t even be connected to the internet was beside the point.
Instead, I would be provided with a personal assistant during the exam to turn the pages in the test booklet and to fill in my answers on the answer sheet. I guess it’s easier and cheaper to pay someone minimum wage for the duration of the exam than to put together a custom computer test station for just one person. In any case, come November, I was well-prepared to ‘sit’ for the exam. Because I wasn’t enrolled in a public middle school, I was required to take the exam on a weekend at a designated location, which for me was Bronx Science.
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On the day of the exam Dad brought me to Bronx Science in our wheelchair-converted minivan. Had it been up to me, we’d have left an hour earlier, but as it was, we were there an hour early. I was just that nervous, I guess. Once we were finally allowed to check in, I had to show my picture ID to prove I was me, and then I was led to a large table, separate from the other exam tables, and I was introduced to my helper Craig Stoeffel, who appeared to be a kid of about my age.
He was tall – at least six feet – with ebony hair, high cheek bones and smooth, porcelain-like skin that almost looked fragile. He had long, thin fingers with perfectly manicured fingernails and he wore a dark navy blazer over a white dress shirt with an open collar that looked very official, yet sexy on him. Completing his outfit was a pair of gray flannel slacks and tan leather boots that were laced up and tied at the ankle, leaving the top eyelets open. Beyond a doubt, he took my breath away. I was gonna have to be careful to keep my eyes on the exam and not on him, particularly since I’d be up close with him the entire time.
I wheeled my wheelchair up to an empty spot in front of the exam table, next to Craig, where a test booklet was already waiting for me. Seeing the actual test booklet quickly vanquished all thoughts of the sexy boy who’d be my helper for the day. My nervousness about taking the exam hit me with full force, but then Craig smiled at me and I didn’t feel so nervous anymore. He said, “Good luck, Simon. Just a reminder that I’m only here to help you turn the pages in the test booklet and to mark your answers on the answer sheet. It goes without saying that I can’t in any way help you answer the questions, but you already know that.”
Noticing a test booklet across from me, I asked, “Will someone else be taking the test at this table?”
“We were expecting a kid with Duchenne Muscular Dystrophy, but we got a call this morning that he’s in the hospital, so I guess we’ll have the table to ourselves,” Craig answered.
“That’s such a shame,” I responded. “I read that kids with DMD usually don’t live past their early twenties, and they’re prone to lots of health problems in their teens. It must be tough, being smart enough to take this exam yet knowing that you might not even live to finish college.”
“Yeah, I can’t imagine,” Craig responded, “but it looks like you’ve had to face your own challenges to get here. Could I ask you about your disability?”
“I have hereditary spastic paraparesis, which in my case is from demyelination of the corticospinal tracts. It’s caused by a rare genetic defect in myelin metabolism.”
“Is it autosomal recessive?” Craig asked.
Nodding my head, I replied, “Yeah, and the defective gene is present in only one in 2,000 people. If you do the math, the actual disease is only present in —”
“One in sixteen million people,” Craig finished for me. It was obvious he himself was very smart.
“Actually, it’s one in fifteen million, ’cause the numbers are approximate. There are actually thousands of different genetic defects that can cause HSP. In some cases, kids are born with severe mental retardation and can never walk. Some people don’t develop any symptoms until they’re middle age. In retrospect I started falling when I was four, but it didn’t become obvious enough for my parents to take me to the doctor until I was five.”
“You’ve obviously done very well for yourself, but it must have been tough getting through school in a wheelchair.”
“Actually, I’ve been homeschooled all my life,” I explained. “I just decided that I don’t want to live with my parents until they pass away. If I’m to make something of myself the way Stephen Hawking did, I’m gonna have to step out of the house eventually, if only figuratively. I put my foot down with my parents and insisted I go to public high school, hopefully here.”
“There’s a series on Apple+ about a kid with an amputation going to public middle school for the first time —” Craig stated to say, but I interrupted.
“Yeah, I saw it. The story was pretty lame, though. Too predictable.”
“It was based on the real life experiences of a Paralympic athlete.”
“Yeah, I know.”
“Did you know that the actor who played the part of Josh really is a kid with an amputation.”
“Really?” I exclaimed. “I’d no idea.”
“How do you think they filmed the scenes with him removing his prosthesis?” Craig asked. “Who better to play the part of an amputee than a real amputee? That could have been my story, actually.”
“Seriously?” I asked.
“Yeah,” Craig answer. “I had Ewing sarcoma when I was nine. That’s unusually young for that kind of tumor and it’s the main reason I ended up getting an amputation —” Just then, we were interrupted by a woman’s voice coming from the overhead loudspeakers, announcing that the test was about to begin. “Perhaps we can talk some more at the end of the day, if you’re interested.”
“Definitely,” I agreed.
The test was more challenging than I’d expected. The questions weren’t all that difficult, but the answers were nuanced, with more than one correct response. There were multiple sections, each with its own test booklet and answer sheet, with short breaks and a couple of longer breaks for those that needed to use the restrooms. Because of the difficulty I had with using public restrooms, I’d taken the precaution of having Mom insert a Foley catheter before we left home, so I only needed to use the restroom to empty my leg bag. I wouldn’t want to use a Foley on a daily basis, ’cause of the risk of infection. Besides which, HSP doesn’t affect sensory nerve fibers and inserting a catheter really hurts. We’d cross that bridge later, if I got into one of the public high schools.
Finally, the test was over and the test booklets and answer sheets were collected for the last time.
“Glad that’s over with,” I exclaimed.
“For sure,” Craig agreed as he turned his smartphone on and checked for messages. I did the same, via voice command. Unfortunately, the only thing of interest was a message from Dad to sit tight out front, as he was running late and I might have to wait for him.
“Well that sucks,” I exclaimed.
“What?” Craig asked.
“My Dad’s probably gonna be late. He said to wait out front.”
“Maybe we can continue our conversation while we wait for him, then,” Craig suggested.
Once we were out front, I asked, “You said they don’t usually amputate for your kind of cancer, but you were unusually young. Why’d they do that?”
“Ewing sarcoma usually presents in the teens,” Craig explained, “and in one in four cases, by the time it’s discovered, it’s already spread. My tumor was just below the right knee, in the tibial growth plate. I played soccer and was having a lot of knee pain, so my pediatrician got an x-ray and that’s how he discovered it so early. Man, that led to a lot of tests.”
“Tell me about it,” I interjected.
“I guess you of all people would know what that’s like. So anyway, they scanned me from head to toe and they didn’t find any metastases, so the plan was to irradiate the tumor and then remove it. Usually, they just shell out the entire affected bone and replace it with an internal prosthesis – in my case artificial knee and ankle joints and a titanium tibia, but at nine, I still had a lot of growing to do. The prostheses are designed to be lengthened as you grow, but not enough for growth from age nine to adulthood. As you can see, I’m not exactly short and I’m not finished growin’. I was gonna hafta have it removed and replaced at least twice in my life, if not more.
“Anyway, the rehab doctor thought I’d have a much better outcome with an amputation. He said the thigh and ankle bones would never grow properly and he worried I’d have chronic pain the rest of my life. With an amputation, I’d have a normal childhood and could even return to playing soccer. I do have phantom sensation, but I don’t have any pain. I’ve always been precocious and my mom’s a cardiologist, so she discussed the pros and cons with me, but left the final decision to me. After everyone gave me their thoughts, some of which were the opposite of what the rehab doctor said, I decided on the amputation.”
“Weren’t you afraid the rehab doctor had a vested interest,” I asked. “Maybe he just wanted to make money from fitting your prosthesis.”
Laughing, Craig responded, “I actually asked him that. I guess it was a pretty gutsy question, coming from a nine-year-old boy. Anyway, he explained that it was the prosthetist who makes all the money from the prosthetic fitting and that he’d actually spend a lot more time with me if I had limb salvage. What sold me was when he said that if it were his son, he’d make exactly the same recommendation.
“So I underwent radiation and amputation, followed by a lot of chemo. In answer to your inevitable question, yes, my hair fell out and I had a lot of nausea and vomiting, but I came through it just fine. I just celebrated my five-year anniversary of being disease-free, so it looks like I’m cured, which makes all the hell I went through worthwhile.
“The type of amputation they did was really cool. Instead of doing an above knee amputation, they amputated right through the knee joint and then put in a special prosthetic knee that’s designed to leave the femoral growth plate intact. That way, I wouldn’t end up with my knees being at different heights when I grew. They were able to reattach the muscles and tendons so that I still have a functioning knee joint. That made all the difference, ’cause I can wear a below knee prosthesis that functions nearly as well as a regular leg. An above knee prosthesis would’ve taken twice as much energy to walk as a normal leg, and there’s no way I coulda played soccer.”
“Can you show it to me?” I asked out of curiosity.
“Not here. I’d hafta drop my pants, but I’m sure it could be arranged in one of our homes.” I was thrilled, ’cause I really liked Craig and thought that maybe we could be friends.
“Where do you live?” I asked him.
“I live in a high-rise co-op, right by the GW bridge in Hudson Heights. It’s called Castle Village and it actually kinda looks like a castle. The view’s fantastic; it includes the Hudson, the bridge and the Palisades in New Jersey, across the way. The downside is that the commute from Manhattan to school takes me over an hour each way, every day. I hafta walk six blocks to catch the Bx7 bus, and then change to the Bx10 in Riverdale. Mom said she’d take me, but she has a busy practice at New York Presbyterian and she often has a lot of early morning procedures, so I can’t count on it. And as for Dad, he’s been out of the picture for a long time.”
“Wait, you’re a student at Bronx Science?” I asked in surprise.
“Freshman year,” he replied.
“You’re what, fourteen?” I asked and he nodded his head. “Didn’t you lose any time from the cancer?”
“I lost a lot of time, but I was determined and I made it all up,” he explained.
“How’d you end up being a helper for the exam today?”
“That’s easy,” he replied. “We’re all required to do community service and this gave me some credit toward the requirement, but even more than that, I know what it’s like to live with a disability. I volunteered because I wanted to help a kid like me to succeed.”
“I assumed you guys were paid.”
“Nah, the helpers are strictly volunteers. We’re all students at the specialized high schools. They trained us and everything. By the way, we’re not supposed to pay attention to your answers, but from what I noticed, I think you got most of them right.”
“Here’s hoping,” I responded, just as Dad drove up in our minivan. Then having a thought, I suggested, “Hey, Craig, why don’t you come over to our house with me right now? You can show me your prosthesis and maybe stay for dinner.”
“Maybe you should ask your dad first?” Craig pointed out.
Turning to my father, who was just getting out of the van, “Dad, this is Craig. He was my helper for the exam, and he goes to Bronx Science. He wasn’t even paid for it. He’s a volunteer. I wondered if maybe he could come over to our house and stay for dinner? It turns out he has a disability too. He’s an amputee and I’d like to ask him some questions about going to school here.”
“It’s fine with me and you know there’s always plenty of food,” Dad answered, “but we need to be sure it’s okay with Craig’s parents.”
“It’s just my mom,” Craig answered, “and she’s a cardiologist at New York Presbyterian. She won’t be home until late tonight, so I was gonna hafta make dinner for myself anyway. I just need to text her to be sure it’s okay, but do you guys live very far from here?”
“We live in Riverdale,” I answered, “in a tiny house, with a ramp out front and a wheelchair-accessible bedroom on the side. It’s not exactly one of those mansions overlooking the Hudson, but it meets our needs and we’re only a block off Riverdale Avenue.”
“You can pick up the Bx10 bus on Riverdale and take it to Bronx Science, practically door to door,” Craig exclaimed.
“That’s the plan,” I agreed.
We piled into the minivan and Dad drove the short distance to our humble abode. He lowered the ramp on the side of the van and I wheeled myself out. Craig followed. “This looks very nice,” he said.
“No need to be polite, as there’s not much to look at from the front. At least we have a fairly large yard, so we had the room to add an addition to the side of the house, with an accessible bedroom and bathroom. Sometimes I think maybe we shoulda bought an apartment in one of those high-rise buildings with a view, ’cause it woulda been much easier with an elevator and having everything on one floor. Our house has a dormer upstairs and a basement that I’ve never seen, ’cause I can’t get up or down the stairs. We used to a have large house in Missouri and I think my parents wanted something with land.” Laughing, I added, “Try finding that in New York City!”
Entering the house via the ramp, I introduced Craig to Mom, who asked him if he had any food allergies or dislikes. While Mom got started with making dinner, I led Craig to my room. Unlike the rest of our house, my bedroom was large, with a queen-size bed in the center, a desk with my laptop on it, a large wheel-in closet with all of my clothes at wheelchair height, and a large bathroom with a wheel-in shower.
“This is nice,” Craig exclaimed. “I really like your posters.” My posters were drawings and portraits of some of the greatest scientists of all time – DaVinci, Galileo, Newton, Pasteur, Einstein and of course, Hawking – not the typical posters seen in most boys’ bedrooms. I’d never had anyone over before, so I never felt the need to have posters that appealed to the masses. Then seeing my bookcases, Craig walked over to them and started looking at my collection of books. “A lot of sci-fi, a surprising amount of non-fiction. You’re well-read.” Then pulling out a book with a familiar figure on the cover, he said, “Stephen Hawking!”
“He’s my hero – my role model.”
“I can see why.”
“I’m not in his league,” I continued, “but I’d like to try to do something similar with my life. He had ALS, though, which is way worse.”
“Yeah, I know. Such a brilliant mind confined to such a tortured body.” Then turning red, he added, “Sorry, I guess that hit a little close to home.”
Truthfully, it really did hit too close, but his comment was unintentional and so I responded, “Hey, no sweat. My disease is nothing like ALS and I’ll never be worse than I am right now. Now that I have a baclofen pump, I’m not nearly as spastic as I used to be. My spasms don’t throw me outta my wheelchair, or throw me out of bed at night.”
“Are you serious? Your spasms used to throw you out of bed?” Craig asked. I could feel my face flush with embarrassment as I thought about it, which only made Craig curious. He asked. “What? Did I embarrass you in some way? What did I say?”
“It’s not you,” I tried to explain. “It’s what led to me bein’ thrown outta bed. I guess I hafta explain it now. You see, the spasms result from any kind of stimulus, like a full bladder or too much pressure on the skin. In bed at night, however, it was from my orgasms.”
“You mean from jerking off?” he asked.
Shakin’ my head, I replied, “No, I can’t jerk off. It was from wet dreams. Of course Mom would come running when she heard me crash to the floor, and then she’d see all the jizz. Naturally, she had to clean it up too. That was what was embarrassing.”
“Oh god, I can imagine,” Craig responded, and then he scrunched his face up and asked, “What do you mean you can’t jerk off?”
“I literally can’t control my arms and hands well enough to do it. I can knock my junk around and maybe bruise my balls, but I can’t get my hand around my dick, let alone move it up and down. It used to make me crazy with frustration until a friend on Facebook suggested I get a vibrator.”
Laughing hysterically, Craig said, “That’s really rich. But hey, if it works. I guess you need to find someone who can jerk your stuff for you.”
Craig’s face turned a brilliant red when he realized what he’d said and I couldn’t help but ask, “Are you volunteering? And while you’re at it, a blow job would be nice.”
“Uh, not on a first date.” Then after an awkward pause, he asked, “You said something about some kind of pump?”
“It’s probably easier to show, you, but you’ll hafta help me take off my shirt.”
With a grin, Craig responded, “I can do that.” He then reached for the hem of my shirt and I lifted my arms up into the air, so that he could lift the shirt up over my head and off my body.
“Is that it?” He asked as he pointed to it.
“Either that, or I made it with a hockey stick and got pregnant with a hockey puck,” I joked, and Craig laughed. “If you feel the skin over the center of it, you’ll notice what feels like a dimple.”
Cautiously, Craig felt where I told him to and he said, “Yeah, I feel it.”
“Every four months, my neurologist inserts a long needle there and fills the reservoir with the medication, baclofen. The baclofen inside is pumped through a thin catheter into the spine, where it’s delivered in minuscule amounts into the spinal fluid, right where it’s most effective and without any of the side effects or toxicity of taking pills. There’s even an app on my phone that allows me to adjust the dosage as needed.”
Craig was still rubbing the skin over the pump and so I said, “If you like rubbing my skin, there are other places that are more fun to rub.”
Getting a sheepish look on his face, he said, “Sorry.”
“You were gonna show me your prosthetic leg?” I remind him.
“Yeah, right,” he remembered, and then said, “I’ll take off my clothes so you can see it better.” He started to remove his jacket and carefully laid it on the bed, then started to unbutton his shirt, I wasn’t sure why he needed to take all his clothes off, but I wasn’t objecting.
Craig proceeded to remove his shirt, his left boot, his belt and then his pants, so he was standing in front of me in his boxers and socks, with his right pant leg pushed all the way down around his prosthetic leg. He was more muscular than I was expecting, so I was practically drooling. I could clearly see the prosthesis, but I wasn’t focused on it, ’cause it looked like a part of him.
Craig then sat on the edge of the bed and pressed on something on the inner side of the prosthesis, and then he slid it off his leg, removed the prosthesis from his pants leg and handed it to me. I wasn’t expecting him to do that and so I nearly dropped it, but then I fumbled with it and caught it between my hands, and was surprised that what I was holding was soft and spongy. He then took it back from me, twisted the ankle and took the foot right off to reveal a metal bolt sticking out of a foam sleeve. He removed the foam sleeve so that I could see that the bolt was attached to the end of a metal shaft that protruded from what looked like a carbon fiber shell.
Looking up at Craig, I saw that his stump was covered with what looked like a rubber sleeve with a metal bolt sticking out of the end. He then unrolled the sleeve off of his stump so that I could see it in all its glory. He then explained, “The silicone sleeve holds the prosthesis securely in place. It latches to a carbon fiber socket and a titanium shaft, which latches to a carbon fiber foot. The carbon fiber absorbs energy at heel strike and then returns it at toe-off, so the foot is what’s referred to as energy storing. It’s almost as efficient as a normal foot. Paralympic athletes use prostheses that are entirely made of carbon fiber, so they can store even more energy.”
Then after a pause, Craig continued. “A lot of people are grossed out by the sight of the residual limb. I understand that. I probably was before I had a stump myself. It helps to feel the residual limb – to massage it. It helps you to realize that it’s still a human leg. You’re welcome to feel it if you’re up to it and if you want to.”
Truly I was grossed out by the site of the stump, but I’d let him feel my pump, so it only seemed fair that I feel his stump – his residual limb as he called it. Tentatively, I reached out with my left hand but ended up batting my hand against the stump, multiple times before I succeeded in touching it, just below the knee. It really did feel like an ordinary human knee. Slowly I slid my hand down along the leg until I reached the point where the skin folded around the end of the stump. There was a bit of a scar, but it still felt like regular skin. It was warm and soft and, well, sensual.
It was then that I noticed that with his leg held as it was, I was able to look right up the leg of his boxers and his junk was on full display. When he noticed where my eyes were fixed, Craig said, “Like you said, there are more interesting things you can rub if you’d like.”
“Is that an invitation?” I asked, wondering if he was serious.
I could have sworn his penis started to grow and stiffen as I felt mine do the same, but then Dad called out, “Dinner’ll be ready in five minutes, boys.”
That sure spoiled the mood. “Listen, we’d better get going before my Dad comes looking for us. If you could help me get my shirt back on, I’d appreciate it.”
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Dinner turned out to be much more enjoyable than I was expecting. My parents didn’t grill Craig with probing questions and remarkably, they refrained from embarrassing me. They asked simple, open-ended questions and let Craig tell us only what he wanted to. He ended up going into a bit more detail about his cancer and the fear he felt at such a young age. He talked freely about the rejection and teasing he got and still gets from it, and the inadequacy he sometimes feels in spite of his academic success.
I learned a lot about Craig and how his parents divorced when he was in preschool. His dad didn’t even try to get visitation rights. What a jerk! I learned that prior to high school, Craig had gone to the Salk School of Science, an advanced middle school that was a joint venture between the city school system and NYU. Very cool.
He was an avid soccer player but wasn’t good enough to make the team. He’d have played intramural soccer, but the intensity of the coursework and the length of his commute left too little time as it was. He was also an accomplished swimmer and even had a prosthetic swimming flipper to use in place of his prosthetic leg. Unfortunately, he wasn’t permitted to participate in regular swim meets because the flipper supposedly gave him an unfair advantage, of all things. He was on the Bronx Science chess team, though.
I told Craig about my history and how I’d been homeschooled all my life. We talked about our lives before moving to New York and I even learned some things about my parents that I was hearing for the first time. Dad regaled us with story after story about the idiots that ran the amusement parks in the Ozarks, and then with stories of the crazy things over which people sued the NYPD.
Overall, it was an enjoyable evening. As the conversation wound down, Craig mentioned that he had school in the morning and had to get home, particularly since he had an hour-long bus ride ahead of him. We wouldn’t hear of that, however, and insisted on taking him home ourselves. The four of us crammed into our converted minivan and made the trek in only twenty minutes. Craig was right – the view from his bedroom was phenomenal.
We met Craig’s mom, who had a rather strong personality. Not that she was mean or unpleasant, but she certainly didn’t hesitate to speak her mind. Basically I liked her no-nonsense style, but could easily see how some men would be intimidated. I wondered if perhaps that was why she and her husband had divorced.
Before we left, Craig’s mother invited us all to spend Thanksgiving dinner with her and Craig and some of their relatives. It seemed like an incredibly generous offer until we found out she had an ulterior motive. Being Jewish, she’d volunteered to work during the Christmas holiday, which was a particularly busy time for emergency cardiac hospitalizations. She’d be working right up until New Year’s Eve and therefore hoped we might let Craig stay with us, as he’d otherwise be alone. It might have been an imposition, but I was positively thrilled and talked my parents into accepting the offer.
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The worst thing about taking the SHSAT is the waiting. Why the school system would give a major exam in early November and then sit on the results until March, I’d never understand. The exam was the sole basis for entry into the elite specialized high schools and everyone who took the exam was talented. Keeping us waiting to find out if we’d won the golden ticket for admission to the rest of our lives was inhumane.
The one thing that helped to pass the time was Craig. We emailed, texted and FaceTimed each other, nearly every day, several times each day. I was falling head over heels for him but neither of us seemed to have the courage to say anything about how we really felt – if Craig even felt the same way as I did. Perhaps I was reading more into the relationship than I should’ve, but Craig sure seemed to hint that he was gay. In the meantime, we enjoyed talking with each other, sometimes for hours at a time.
Thanksgiving wasn’t quite the experience I’d hoped for, as we shared it not only with Craig and his mother, but with his grandmother, who was visiting from Florida, and with a bevy of aunts, uncles and cousins who drove in from Brooklyn. Relatives were something new to me as we’d had nothing to do with ours since moving to New York. From watching them working together in the kitchen, it was evident that it was Craig’s grandmother who did the lion’s share of the cooking, with his mom doing little more than getting in the way. It was certainly an education in family dynamics!
It was just three weeks later that Craig arrived at our house with a large, wheeled duffel bag in tow. How he’d managed to get the thing to school that morning, I wasn’t sure, nor was I sure where he’d kept it at school during the day. Simply getting to our house on the Bx10 would’ve been difficult enough.
After Mom invited him in, he asked, “Where can I put this thing?”
“That all depends on where you’d like to sleep,” Mom responded. “Of course Simon would like you to sleep in his room, but unless you share his bed with him, that would mean sleeping in a sleeping bag on the floor. Before you decide you’re fine with that, you need to know that he gets a lot of spasms at night, so you might not be able to get much sleep, even if you do share his bed. Otherwise, we have a very nice guest room upstairs and you’re welcome to use it. The downside is that there’s no bathroom up there, so you’d have to schlep downstairs to go to the bathroom at night.”
When he didn’t answer right away, I worried that he might choose to sleep upstairs, but then I was just as afraid of losing him if he thought I was pressuring him to sleep with me, so I said, “Don’t worry about hurting my feelings if you decide you’d rather sleep upstairs, Craig. We’ll have plenty of time together, regardless.”
“It’s not that,” Craig answered. “I don’t wear my prosthesis to bed, so it’s pretty hard to ignore my stump at night. I know you’re too polite to say anything,” he said as he looked at me, “but I don’t want you freakin’ out when you see it up close and personal. I was thinking that by sleeping upstairs, I’d avoid putting you in that position.”
I responded, “Craig, I’m the freak. I’m a spaz who’s legs jump around from the touch of the sheets, and who’s arms flail about whenever I try to do anything. Don’t worry about how I’ll react to your amputation. I’d like to think we’re way closer than that —”
“For sure,” Craig interrupted.
“The main thing is that we be honest with each other. We need to tell each other what we’re thinking,” I said. “Otherwise, we’ll end up hurting each other because we think the other person won’t understand.”
“That sounds like good advice,” Mom interjected.
“Tell you what,” Craig went on. “As long as the upstairs guest room remains an option, why don’t we try me sleeping with Simon in his bed. If it doesn’t work out, there’ll be nothing lost other than a night of sleep.”
“Sounds like a plan,” I agreed as I led him to my room and showed him a convenient spot on the floor where he could stash his duffel. “Dad won’t be home until around seven if we’re lucky, and we won’t eat dinner until then. If you’d like, we can get a snack to tide us over.”
“A snack would be great,” Craig agreed and we headed to the kitchen, where Mom already had grilled cheese on rye sandwiches waiting for us, with glasses of milk.
After taking a bite out of his, Craig exclaimed, “Wow! What’s in this sandwich? I’ve never tasted grilled cheese like this before.”
“Just a few sprinkles of thyme and bay leaf from our garden,” Mom answered. Since I’d never had a grilled cheese that didn’t have seasonings from our garden, I didn’t realize there was anything special about Mom’s grilled cheese sandwiches before.
“This is the best grilled cheese I’ve ever tasted,” Craig went on. “Since I’m usually the one making grilled cheese for myself at home, you’re gonna hafta show me how to do it.”
“I’d be happy to, Craig. You may not get the same results using spices from the store, but your sandwiches will still taste a lot better than without them.”
After we finished the sandwiches, Craig offered to help with the cleanup, but Mom shooed us out of the kitchen so she could get dinner going. Craig and I headed back to my room as I related, “One thing I never had to worry about was helping out in the kitchen or doing chores. ’Course I’d have given anything to be able to help out around the house when I was younger and just getting used to havin’ HSP. Part of why I want to become a college professor is ’cause it’s something I can do, even with my disability. I might not be able to live on my own just yet, but by getting a good job, maybe I can contribute something to our finances.”
“You don’t see yourself as living with a partner?” Craig asked.
“Who would want me for a partner?” I replied. “At least you look normal, but look at me. Talk about high maintenance. I need an aide as much as I need a lover. It’s a lot to ask of anyone.”
“But Hawking married, as I recall, and they had kids,” Craig countered.
“He met his first wife before he was diagnosed with ALS, so they were already in love when he got sick. They went on to have three children, but his wife put her own career on hold while his was taking off, which was probably a recipe for trouble in the marriage. Hawking enlisted the help of his graduate students, hiring a series of them to serve as his aides —”
“So that’s why you want to go into academia,” Craig interrupted. “You just want cheap labor.”
“No, that’s not it at all!” I practically shouted.
“I was just kidding, Simon. Lighten up a little, okay? You’re clearly smart enough to be another Stephen Hawking, and he showed you what a person with a disability like yours can do.”
“Exactly,” I replied.
“You mentioned Hawking’s first wife. I take it there was a second wife?”
“He married one of his nurses,” I answered. “Marrying your caretaker probably isn’t a wise move, ’cause it results in an inherently asymmetric relationship. There were allegations from his children of abuse, but Hawking refused to press charges, and then they divorced.”
“What kid uses words like ‘asymmetric relationship’,” Craig said under his breath. “You sure know a hell of a lot about Stephen Hawking.”
“Like I said, he’s my hero. I’ve read a couple of biographies on him in addition to reading all of his books. Maybe it’s a bit of an obsession with me, but it’s an inspiration too.”
“And if he could get married and have kids, perhaps you can too,” Craig said.
“Finding someone to marry’s a long shot,” I countered, “and as for having kids, every single kid would inherit my genetic defect. Unless I married someone with the same mutation, none of them would have the actual disease, but there’s no need for me to spread the mutation any further.” Of course, there was an even greater reason I’d never have biologic children, but I was still afraid to discuss it with the boy I’d come to love.
“So… something tells me you’re not into video games,” Craig asked.
Laughing, I responded, “Until they come up with an interface for a spastics like me, video games are pretty much a nonstarter. There are some strategy games I’ve played with friends over the internet, but none of them are more challenging than chess, and I can play that with anyone – anyone who knows how to play chess, that is.”
With a broad smile, Craig said, “I’m more than up to a challenging game of chess – if you’re any good at it. ’Course with me bein’ on the chess team, you really don’t stand a chance.”
“Good at it?” I was incredulous. “You’re on!”
I didn’t have an actual chess set, having only played it over the internet on my computer, so I asked Mom if I could borrow Dad’s. Mom set up a card table in my room and we set the chess game up on that. Of course Craig had to move my chess pieces for me; otherwise, I’d have knocked all the pieces off the board with every move, but otherwise we were on an even playing field, so to speak.
I wasn’t sure what I was expecting, but it wasn’t a challenging game. I figured that since he was on the chess team at Bronx Science, he’d probably blow me outta the water, but if I was as good as I thought I was, I’d show him who was boss. What happened was that we played so intently while waiting for Dad to arrive that I didn’t even know he was home until he knocked on the door and told us dinner was ready. We’d spent two hours playing to what was nearly a draw.
Getting ready for dinner was a real education for Craig, as I needed to piss. Actually, I’d needed to for perhaps the past hour, but I didn’t want to interrupt our game, so my bladder was very full. “Craig, I need to take a leak and I can’t do that without a little help. If you want to get my mom, that’s okay, but if you could help me with it, maybe we could avoid bothering her?”
“Sure, what do I hafta do?”
“I can get up to the toilet, but I’ll need you to unzip my zipper and pull my dick out from under my boxers.”
“I can do that!” Craig replied with perhaps a bit too much enthusiasm. “For a while, I thought you meant I’d have to undress you and carry you into the bathroom, or something like that.”
“Nah, as you’ll see, it’s not as difficult as it looks,” I explained. I then wheeled myself into my bathroom and pulled up right in front of the toilet. When I got there, with Craig watching me intently, I engaged the lift function and my wheelchair dutifully lifted me up into a standing position.
“Woah, I didn’t know your chair could do that.”
“It’s one of the reasons it cost 50k. I can’t stand on my own let alone walk, but with my trunk and arms supporting me, the legs actually stiffen on their own and I can stand like this for a while. The only thing I can’t do is open my fly and pull out my dick.”
“Would you like me to do that now?”
“Before you do, I hafta caution you that a full bladder makes me hard. It’s nothing personal.” Actually, it was very personal, but I couldn’t tell him that.
“Damn, if you hadn’t told me, I woulda gotten my hopes up.” What was it with the sexual innuendos? Dare I get my hopes up?
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Dinner was always a lively affair at our house with scarcely a moment of silence. Having Craig there made it doubly so. I’d heard that families seldom eat together these days, with different schedules colliding and an ‘every person for themselves’ attitude. Craig and his mom were a perfect example of that, with each of them nuking a frozen dinner when the need arose. Because Dad was the only one with a schedule outside the home, we always ate together, no matter what. For Craig, it was an entirely new experience.
After we finished the meal, Craig insisted on helping Mom clear the table and load the dishwasher. He was shocked when Dad produced a Hanukkah menorah and an unopened box of candles. We weren’t even Jewish and a Christmas tree adorned our living room, but it was the sixth night of Hanukkah and our guest was Jewish. I was surprised that Craig didn’t know the prayers for lighting the candles but his mother seldom had the time, so Craig grew up without much religion. My parents had grown up in Southern Baptist households and although not religious, they weren’t about to let our guest go without celebrating his observances as well as ours.
After dinner and the lighting of the candles, Craig and I returned to my room and resumed our friendly game of chess. Between the chess game and our debating the fundamentals of cosmology, Craig and I had a blast. I almost didn’t mind losing the game when I missed seeing an alternative move to the one I thought Craig would make. I didn’t begrudge him the win at all, as it was an excellent game and Craig had proven to be a worthy opponent. He was easily the best opponent I’d ever played, but then he said the same thing of me. He insisted that I try out for the chess team when, not if, I got into Bronx Science.
Almost as if on cue, Mom knocked on my door, just as we were putting the chess set away.
“Are you boys ready to go to bed?” Mom asked.
“But it’s not even eleven o’clock,” I complained.
“And I imagine you’d like to spend some time doing things you’d rather I not interrupt.” Was she implying Craig and I were gonna have sex? But then she continued. “Maybe watch a movie or talk into the early morning hours, free from worry about parental interference, I think you call it. Wouldn’t you rather get ready now and have the rest of the evening to do with what you want?” Then looking at Craig, she continued, “Craig, perhaps you’d like to take a shower in the other bathroom while I get Simon ready for bed?”
Pausing for a second, Craig asked, “I’d rather shower in the morning and it’ll only take me a few minutes to get ready for bed. Would it be alright if I help with getting Simon ready. It’s not that I’m a voyeur or anything, but I’m gonna be here for more than a week. I figure that maybe I can help out and save you the trouble of taking care of Simon while I’m here. It’s the least I can do in return for your taking me in.”
“That should be Simon’s decision, don’t you think? Some aspects of his care can be… unpleasant, and you might rather not be around for that.”
Craig had really put me on the spot. The thought of him undressing me, washing me and putting me into bed was exciting. A bit too exciting. I doubted Craig would feel the same way, though. The bigger issue was with the more mundane aspects of my care, and so I explained, “Craig, I appreciate your wanting to help, but some things are best shared only with close family. Maybe brushing my teeth wouldn’t gross you out, but helping me to take a dump isn’t something I particularly like to share with even my Mom, let alone a close friend. I don’t mind you being here, but I wouldn’t ask for help with that from anyone.”
“Hey, if you’re comfortable with me seeing you on the toilet, I’m comfortable with the consequences. If Stephen Hawking could hire his graduate students to help with such things, surely I can help you that way. You’re my best friend, after all.” It was the first time he’d referred to me as his best friend and it made me feel like I was over the moon.
“You’re my best friend too, Craig,” I responded. “Feel free to help if you wish, but feel just as free to ask for my mom’s help if it’s too much.”
Without getting into the details, Craig actually was a big help in getting me ready for bed, even when it came to dealing with my shit. The most awkward part actually occurred at the end when Mom, her role complete, said, “Craig, if you boys need anything, just knock on our door. The master bedroom’s just on the other side of the kitchen. Now try and get at least some sleep, boys.” Mom just left us there, with me lying naked in full view and Craig standing fully dressed at my bedside.
Craig broke the ice by saying, “Well this is awkward.”
I countered with, “I guess you’ll just hafta get naked too, then.”
“Oh, I’ll definitely be getting undressed, but first I hafta ask what you usually wear to bed.”
“You’re lookin’ at it,” I answered. “Truthfully, I don’t even own a pair of pajamas. I probably wore them when I was a toddler but as my disease progressed, they only got in the way.” Then I asked, “Would you feel more comfortable if I at least wore my boxers?”
Laughing, he replied, “I should hope we’ve become close enough that it shouldn’t matter. If you usually sleep in the nude, then don’t change for me. I usually sleep naked too and since I’m not experienced with sleepovers, I didn’t even think to bring pajamas. If you don’t mind, I’ll sleep nude too. Don’t worry, I’m not gonna molest you or anything.” Then he lowered his voice and said, “Not unless you want me to.”
Damn, another sexual innuendo. Well, two could play that game, so I responded, “If you’re a good boy, I might even let you.” Before he could respond to that, I asked, “Would you like to watch something? We don’t have much, but we have Amazon Prime, the Hulu/Disney+/ESPN bundle with live TV, Apple TV+, Paramount+, and Peacock, all the basic ones with commercials. Sorry, but no Netflix, HBO or other premium channels.”
“Just let me get undressed and I’ll join you in bed, and we’ll choose a movie or something.” Craig not only removed all of his clothes, but he removed his prosthesis before getting in bed with me. Since we were both major sci-fi fans and had yet to watch the latest Star Wars series, we propped ourselves up and settled on binge watching that. The hours quickly passed as we immersed ourselves in a galaxy a long time ago and far, far away. When we realized it was starting to get light out, we decided that perhaps we should try to get some sleep.
<> <> <>
I didn’t wake up until bright sunshine was streaming into my room. I had a full bladder and my mom, who normally would have come to wake me up by now, was conspicuously absent. I merely needed to ask Alexa to get her, but then I noticed that there was a hand draped across my chest and something hard and throbbing was poking me in the thigh. It was then that the cobwebs began to clear from my brain and I remembered that Craig was in bed with me.
Turning my torso slightly, I felt him stir and then he quickly removed his arm from me and said, “Sorry, I didn’t realize I was cuddling with you. You make a great Teddy bear, though.”
“That’s okay, Craig,” I replied. “It was actually rather nice. I’m just surprised you were able to sleep at all with the way I usually jerk around at night.”
“Well, either I slept right through it, or my cuddling with you kept you from jerking. Either way, I slept well. By the way, what time is it?”
I called out, “Alexa, what time is it?”
The computerized voice called back, “The time is twelve thirty-seven PM on Saturday, December 24. The weather is mostly sunny at 19 degrees. Today’s high is expected to be 21.”
“Damn, I can’t believe we slept past noon,” Craig said as he separated his body from mine, sat up on the edge of the bed and stretched with his arms overhead, his hands balled up in fists and his back arched.
He looked sexy as hell, but I couldn’t say that so instead I said, “My bladder’s about to burst. If you can help me get onto my shower wheelchair, I’ll take care of business and then we can take care of my morning rituals. Speaking of which you said you usually shower in the morning and you’re welcome to do it in here, but how exactly do you shower with only one leg?”
“I usually use my crutches to get onto a shower bench, but since I stupidly forgot to bring my crutches, I’ll use my prosthesis instead and take it off once I’m in the shower, before I turn the water on. Let’s start with our morning piss, and then we can work out the logistics.”
“Should I get my mom to help?” I asked.
Giggling, Craig answered, “I’d rather she not see me naked. Besides, which, I think we can manage fine without her.”
Quickly donning his prosthesis but otherwise remaining naked, he walked around to my side of the bed. He was fully erect and seemed embarrassed by it as he turned red all over. “Sorry, I’m always hard, first thing in the morning.”
I couldn’t resist saying, “Admit it, you’re just jealous of my sexy body.”
“In your dreams.”
“Actually, I’m hard too,” I admitted.
Pulling back the covers, Craig said, “Indeed you are. Let’s get you to the toilet so you can do something about it.” After I did my business, he wheeled my shower wheelchair out of the way and let loose his own stream. “I hafta shower, but do you, like wash up or anything in the morning?”
“Mom usually washes me up. She washes my face and my pits, brushes my teeth and then dresses me.”
“Not shaving yet, I take it?” He asked with a laugh.
“Are you?” I asked in return.
“Not yet, but soon, I think.”
“I hope not real soon,” I replied. “The peach fuzz on your upper lip looks sexy.” Shit, did I really say that?
“You think I look sexy?” he naturally asked. How the fuck was I gonna get out of this one?
I was so afraid of losing him that instead of telling him how I felt, I replied, “I’m sure all the girls think so.” Damn, why couldn’t I be honest with him?
“That would be news to me. Let’s get you washed up, and then I’ll take my shower.” Wheeling me up to the sink, I showed Craig where everything was and he proceeded to wash my face. Noticing how I used my hands without even thinking about it, Craig said, “You know, Simon, I think you have better control of your hands than you think. Maybe it has something to do with that fancy pump. Why don’t you try washing your pits yourself?”
“I’ll probably end up washing your pits in the process, but I’ll give it a try,” I agreed. Much to my surprise, I found that once I actually got my washcloth into my armpits, I could wash and dry them on my own. It was a revelation. I even managed to wash my dick, balls and groin by myself.
“Maybe you should revisit jerking yourself off,” Craig suggested.
Shaking my head, I said, “No way. The stimulation causes my legs to spasm. There’s just no way I could maintain the motion, you know? It’s difficult enough with the vibrator. Like you said, I need to find a willing partner.”
I next took a stab at brushing my teeth and instead nearly ended up stabbing myself in the eye, after getting toothpaste just about everywhere but on my toothbrush. Craig ended up brushing my teeth for me, but then he said, “You know, they have Steadicams for keeping handheld cameras steady when they shoot movies. You can even buy a small Steadicam for use with your smartphone. I wonder if something like that could help with brushing your teeth.”
Thinking about it for a minute, I realized there was a good chance it might actually work and I got excited thinking about it. “All a Steadicam is, is a gimbal-mounted three-axis electronic gyro. I see no reason why we couldn’t adapt one to hold my electric toothbrush.”
It was interesting seeing how Craig showered with only the support of one leg. He’d obviously been doing it for some time. After washing himself, he grabbed the silicone sleeve from his artificial leg, turned it inside out and proceeded to wash it as well. “Usually I wash this at night before I get into bed, so it has time to dry overnight, but I forgot last night. Just, I forgot my crutches to get into bed afterwards.”
“I have some forearm crutches you could use,” I noted. “’Course they’re probably too short for you, but they can be adjusted and they’re certainly better than nothing.”
“I’ll definitely take you up on that.”
Once Craig finished drying himself and thoroughly drying the silicone sleeve, he dressed himself in a pale green t-shirt and jeans, with an open red flannel shirt over both. It was an incredibly sexy outfit. He then proceeded to dress me in a dark green cable-knit sweater and khakis.
<> <> <>
When Craig and I finally made our appearance, Mom said, “I’m not sure whether to serve you a late brunch or a before-dinner snack.” She was busy preparing a feast for tomorrow’s Christmas dinner, with a lighter meal for Christmas Eve. It was understandable that she wouldn’t want to take time to prepare anything for us late risers, however…
“But we’re starved, Mom,” I complained.
“That’s what you get for staying up all night,” she replied, but then added, “I guess I can get you something simple for brunch.”
“I can cook,” Craig interjected. “I make a mean omelet.”
“Craig, I really appreciate the offer, but you’d only get in the way. A three-egg omelet with peppers, onions and cheese with hash browns will hardly take any time at all, particularly since the peppers and onions and the hash browns are from frozen.”
While we ate our two-o’clock brunch, I told Mom about Craig’s discovery that I can wash myself, and his ideas for brushing my teeth. I expected her to be thrilled, but if anything, she seemed a bit put off, as if Craig was coming between us. For the first time I began to wonder if Mom had become emotionally dependent on me as much as I’d been physically dependent on her. Maybe her need to take care of me was the real reason she’d been so reluctant to let me try to get into Bronx Science or to go away to college. Perhaps it had originated out of love, but it had morphed into something sinister. It was a lot to think about.
<> <> <>
“Finally,” Craig said as he closed my bedroom door behind us. It was our first chance to be alone since we ventured forth several hours earlier. Mom had roped Craig into helping with some of the preparations for Christmas, so naturally, I stayed with him.
Why Mom went to so much trouble when it was just the three of us, and now Craig, I wasn’t sure. She always did, maybe because she missed the large family Christmases we left behind when we moved to New York. Sometimes I wondered if our extended family was ashamed of me. Could that have been the real reason behind our move to New York? Whenever I tried to ask my parents about such things, they always changed the subject. Truthfully, I barely have memories of my grandparents, let alone a gaggle of aunts, uncles and cousins, some of them once or twice removed. I can’t miss what I can’t remember.
“How about we get ready for bed, and then we can finish off the remaining Star Wars episodes,” Craig suggested.
“Sounds perfect,” I agreed.
“I’ve been thinking, maybe I should switch to taking my shower at night while I’m here. It makes more sense, ’cause I don’t wanna get my prosthesis wet while helping you with your shower. As long as I hafta get undressed anyway, I might as well shower at the same time.”
“Are you saying you want us to shower together?” I asked.
“Well yeah, for practical reasons,” Craig explained. “Get your mind outta the gutter. There’s nothing sexual about it. Not unless you want it to be.”
There it was – the hint of sexual innuendo. How was I ever gonna find out if maybe Craig’s gay? I responded with, “In your dreams.”
“I have some pretty wild dreams, Simon. They’d probably be wet dreams if it weren’t for my jerking off.”
“You’ve been here more than 24 hours, Craig, and we’ve been together full time, so I know you’ve yet to jerk off. I usually use my vibrator just about every day and already I can feel the pressure building. I imagine you must feel it too.”
“Are you saying you’d like to jerk off together or maybe jerk each other off?” Craig asked.
It might not tell me if he was gay, but it’d be a start, so I asked, “Are you saying you wouldn’t?”
With a sheepish grin, he responded, “I’m willing if you are.”
“In the shower?”
“No mess to clean up that way, but out of curiosity, how will you jerk me off?”
“Well, I could use my vibrator,” I suggested, “or maybe I can give you a blowjob.”
“You don’t have to do that, Simon. That’s asking too much of you.”
“What if I want to, Craig? You’re my best friend and best friends do favors for each other.”
“That they do, but… well… let’s just see what happens.”
What happened is that while I washed my face, arms, torso, and under my arms. Craig washed my back, my legs, thighs and feet. We were both hard as steel in anticipation of what was to come. Of course, he was faster at washing me and reached my groin before I did and as he lathered up my dick and balls, it proved to be too much for me. Without warning, I came forcefully as my spunk hit him squarely in the face and chest. That would’ve been bad enough, but my legs went into spasm, causing me to kick the shower bench out from under him and making him fall forward. Because the wheels on my shower chair were locked, the entire chair tipped backwards. That could’ve been very dangerous, as I coulda fallen all the way backwards and hit my head on the floor. Instead, I slid forward and ended up with Craig landing on top of me as I landed on the floor.
“Are you alright, Simon,” Craig asked in genuine concern.
“I’m fine, but are you okay?”
Instead of answering, Craig started laughing hysterically before he finally said, “Well that went well.” And then we both laughed some more. “Let’s get you back into your chair and rinse you off, and then I can take my shower.”
“And I can give you your blowjob too,” I added.
“You still wanna do that?”
“What are best friends for if not that?” I replied with a grin.
It turned out that logistically, giving Craig a blowjob while I was seated in my shower wheelchair and he was seated on the shower bench just wasn’t gonna happen. Instead, we finished up our showers and Craig got me into bed. He then joined me and with me on my back, attempted to lower his dick to my mouth, but between the amputation and the lack of room, it just didn’t seem to be working, so he turned around. The result was that we were in position for a 69 and he took advantage of it, going down on me at the same time I opened my mouth to him. Craig ended up fucking my face and sucking me at the same time, and neither of us lasted long. Of course, I swallowed, but I was surprised that Craig did too. I was getting more and more hopeful that he was gay, but I was still too chicken to ask him.
<> <> <>
Come the morning, I was like a little kid, anticipating the gifts I’d find under the tree. It had been a long time since I thought they came from Santa’s workshop, but even as tight as our finances might have been, my parents never let me down on Christmas morning. Of course, I was very limited in what I could do to shop for presents for them, so we had a running arrangement where I was given a budget for presents and made my purchases over the internet. When they arrived, Mom wrapped the boxes unopened, so she never knew what was inside. It wasn’t until last year that it dawned on me that she could have looked them up in my order history.
This year was a little different in that I wanted to get something for Craig, so I asked for and was given a larger budget. When I came across a 50th anniversary limited edition Star Trek 3D chess set in hand-carved wood, I knew I’d found the perfect gift for him but fuck, the Amazon merchant selling it wanted $1,500 for what he claimed was a sealed, unopened box. That was twenty times my budget. The merchant also offered a plastic version for $150, but it looked like a cheap piece of junk.
I managed to find a seller on eBay with the 50th anniversary chess set in the original box, but unsealed and reportedly in mint condition. The ‘buy it now’ price was $560 plus $29 shipping. With a bit of parental pressure, I could maybe afford to bid on it if the bidding didn’t go above $250, but what if it went for more? Could I talk my parents into kicking in enough to buy it now? It took a lot of pressure and promises, but I talked them into getting it for Craig in lieu of what they would’ve spent on me and what they might’ve spent on Craig themselves. I couldn’t wait to see the look on Craig’s face when he opened it.
With the glee of a young boy, I elbowed Craig in the ribs as he slept soundly, once again snuggled up with me. “C’mon, it’s Christmas!” I said in my excitement. “Let’s go see what Santa left us under the tree!”
After mumbling something incomprehensible, Craig responded, “I’m Jewish. I don’t believe in Santa Claus.”
“And you believe that a tiny vessel of oil was enough to fuel the sacred light for eight days?” I countered.
Giggling, he said, “You sure are eager, like a five-year-old.”
“What’s wrong with acting like a five-year-old on Christmas Morning? C’mon, let’s get going!”
Craig helped me onto my shower wheelchair and into the bathroom, but then I was again surprised at how much I was able to do for myself with only Craig’s help with setup. Slowly it began to dawn on me that with the right equipment, I could probably take care of myself with only a little part-time help. It was a true revelation.
As usual, Mom had a pancake brunch ready for us for Christmas morning, with molasses and real maple syrup, and she insisted we eat before we opened our presents. Her cruelty knew no bounds.
Finally, Craig and I were seated in front of the Christmas tree and Dad began to hand out the gifts. At first the gifts were the usual stuff – a new tie for dad, a faux pearl necklace for Mom, a sweater for me – and then Dad handed Craig a large wrapped box.
“You didn’t need to get me anything,” Craig said, but it was clear from the eager look on his face that he was happy we did. Ripping away the wrapping paper, he stared in disbelief at the box, which showed a picture of the chess set inside.
Not looking at any of us in particular, he said, “This is a limited edition. I remember when this came out. I saw it advertised in a fan magazine that I used to get. It was outrageously expensive, even then; otherwise, I would’ve tried to get my mom to buy one for me. I was only eight at the time, as I recall, and already I loved playing chess. I thought the 3D chess set in the original Star Trek was totally cool. I still do and can only imagine what this musta cost, even used.” Then opening the box, he continued, “Here’s the certificate of authenticity, and everything’s in perfect condition. It looks like it was opened but never used.” Then looking at me, he said, “This musta cost you hundreds of dollars.”
“Simon picked it out, but it’s from all of us, Craig,” Dad explained.
“It’s way too much!” Craig exclaimed and then he did something truly unexpected – he hugged me tightly and then kissed me on the lips. “Oh shit, I shouldn’t have done that. I guess I got carried away.”
After I got past the shock, I replied, “Well, it wasn’t quite what I was expecting from my first kiss, but I’m not complaining.”
“And you can still look forward to your first kiss from a girl,” Mom added a bit harshly. Fuck. There was little doubt that Craig was gay, which was wonderful, but Mom’s response made me fear there could be repercussions. However, it was Christmas and knowing Mom, she wouldn’t let her concerns interfere with our celebration. Thankfully, she didn’t.
Dad resumed handing out gifts and I was surprised when he handed me a large box from Craig. I hadn’t seen him carry the box in when he arrived, and I didn’t see him get it out of his luggage. Hell, it would’ve taken up more than half the space in his duffel bag. He must’ve had it sent to our house. Once I tore off the wrapping paper and opened the box inside, I was confused and unsure of what my best friend had given me. The contents looked like some sort of gadget with a whole bunch of loose parts. Turning to Craig, I asked, “What in the world is all of this?”
“I kind of gave it away when I talked about using a Steadicam to help you hold your toothbrush. I’d already had that idea from when we first met and I’ve been working on it ever since. I had my Mom order a professional Steadicam through the Cath lab in her department, which allowed her to claim a sizable discount. She could get away with it because the department buys a lot of photographic equipment. It also allowed her to buy it using her pre-tax income.
“I devised a simple mounting cuff that should make it easy for you to don and doff the Steadicam whenever you need to use it. I added a magnetic bracket to the camera mount, which I hope will allow you to attach a series of devices like a toothbrush, a hairdryer, a hairbrush or even a writing instrument… and someday a shaver. I’ve provided corresponding magnetic mounting jigs that can be attached to all the objects you use and left in place. That’ll make it simple for you to grab and manipulate all of those objects without all the jerking and shaking.”
“I can’t believe you did all that,” I exclaimed. “You’re gonna be a phenomenal engineer someday. We have to try this out. Now!”
Craig carried the box into my bedroom and set it down on my bed as I followed behind him, while my parents followed me. Craig showed me the Steadicam apparatus and showed me where he’d attached an adapter that would let me charge the device wirelessly, just as I did with my phone. He showed me how to slide my forearm into the cuff he’d attached to the device, and how to lock it in place. The latch he’d devised was ingenious and in no time, I was able to don and doff the device with ease. I was surprised at how light-weight the whole thing was and I had no trouble at all lifting it off the bed and holding it. I still wasn’t sure how a device intended to eliminate camera shake could compensate for my jerky movements. Most photographers weren’t spastic and if they were, they generally went into another line of work.
Craig grabbed my electric toothbrush from the bathroom and strapped it into one of the magnetic jigs. When I reached out with the Steadicam, the magnetic jig attached itself as if by magic. When I lifted the toothbrush, I was surprised at how steady the brush head remained, even as I spasmed. Even more amazing was how easy it was to keep the dry, vibrating brush head flush with my teeth as I brushed the fronts, crowns and backs of my teeth. It was as if the Steadicam had helped to stabilize my shoulder, arm and forearm.
“That was really amazing,” I said as I set the toothbrush down and it easily popped off the end of the Steadicam. “The hardest part was turning the damn toothbrush on; otherwise it was intuitive.”
“Perhaps I can add a CO2 sensor to detect your exhaled breath and turn the toothbrush on and off automatically. Frankly, I wasn’t sure how well you’d be able to control it. I spent a lot of time looking up what’s known about spasticity. If you try to fight it, it can actually make it worse. If you add weight, you might reduce the jerking at the cost of not being able to lift your arm at all.
“The Steadicam simulates the effect of increasing the mass of your forearm without increasing the weight. It also adds a bit of damping to your movements. In other words, it’s as if you were under water. That makes it easier for your spinal cerebellar tracts to restore normal motor control. I got the idea from my own experiences with swimming. Working on this has piqued my interest in the field of biomedical engineering and it’s given me a sense of purpose. I really could see myself doing this kind of work for the rest of my life.”
“Quite the engineer,” Mom said as she fixed Craig with a steely stare. I knew her well enough to know that a quiet rage was building within her and it was only a matter of time before it reached a full boil. A storm was brewing that was sure to become a tempest.
<> <> <>
I’d really hoped we’d make it through Christmas dinner. It was obvious that Mom was high-strung, but she was putting on a happy face and seemed to be doing her best to avoid ruining her carefully-prepared Christmas celebration. We had a tradition of elaborate Christmas dinners, followed by watching old Christmas movies on TV and then singing Christmas Carols before going to bed. I had high hopes we’d at least make it through dinner, but it was as if the air was filled with noxious fumes and all it took was a spark to ignite them.
The spark came in the form of Craig’s apparatus, which he insisted on setting up for dinner so that I could feed myself without help from Mom. Ordinarily, Mom cut up my food and I made use of an adaptive spoon and a plate guard that allowed me to scoop the food up and get it into my mouth, at least most of the time. Occasionally I’d miss my mouth and the food would land back on me, which was why I wore a bib at mealtime. Of course Mom was constantly cleaning up after me and I think that she secretly enjoyed it. With a spoon attached to the Steadicam on my left forearm and a rocker knife held by a cuff on my right hand, not only could I get my food to my mouth consistently, but I could even cut it up for myself. The equipment took my mother out of the loop – completely.
Craig was positively giggling as he watched me feed myself and even I could see the love in his eyes. And then Mom reached her breaking point. “Good god!” she shouted. “You’re acting like a schoolgirl fawning over her boyfriend. My son is not going to be queer!” Then turning to fix my best friend with a cold, icy stare, she shouted, “Craig, you need to leave! NOW!”
“No!” I shouted. “We promised his mother he could stay here for the week. She’s counting on us.”
“But he’d be staying home alone anyway, so what’s the difference?” Mom had a point there.
“Everybody calm down,” Dad interjected. “No one is going anywhere. Let’s talk this out rationally, and then we’ll deal with things as they are – not as we want them to be. The bottom line is that Simon’s never been happier than he’s been since Craig entered his life and anything we do that interferes with that would be criminal. Remember, both boys are fourteen and even straight boys often fool around at that age.”
“Did you?” Mom shouted at Dad.
“That isn’t any of your business and it’s definitely not something appropriate to discuss in front of the boys. Suffice to say I was a normal fourteen-year-old boy and let’s leave it at that.” Then looking directly at Craig, he said, “Craig, in a very short time you’ve become like another son to me. Your kindness and intelligence are a delight to see. Like I said, you’ve made Simon very happy and for that, I’m grateful.
“My one concern is that both of you could be hurt if one of you wants something from the relationship that the other can’t provide. Unrequited love is a bitch and it could be tough on both of you if you can’t still be best friends. It’s obvious that you both love each other and that love doesn’t necessarily mean anything more than the love shared by two best friends.
“Craig, I hate to put you on the spot and I promise you that anything you tell us will go no further than this table,” he added as he fixed Mom with his own stare. “With that in mind, could you tell us if you’re gay.”
“Yes,” he answered softly, then added, “Yes, I’m gay,” to make sure he was being clear.
“Are you in love with Simon?”
“More than you know, but maybe I should go,” he replied. “I’ve been wanting to tell Simon, but I was so afraid he didn’t love me the same way. I was afraid of losing him completely, and maybe I was secretly hoping he’d be willing to settle for me, even if he’s straight. I feel terrible about that… like I may have been taking advantage of him, but that’s the last thing I’d ever want to do. It’s just that I love him so much, it hurts… if that makes any sense. I don’t know what I’d do if I lost him, but now I wonder if I may have deceived him without meaning to. I think I should go.”
“You’re not going anywhere, Craig,” Dad answered. Then looking directly at me, he asked, “Simon, how do you feel about Craig?”
“Having him say that he’s gay and that he loves me feels like I’ve won every lottery that’s ever been or ever will be,” I replied. “For so long, I just assumed I’d be alone – that no one would ever look at me, let alone love me. The realization that I’m gay barely registered.” Not surprisingly, Mom gasped. “After all, what difference would it make whether it was a girl or a boy that never looked my way?” Then turning to look at Craig, I continued, “Craig, your Christmas present was fantastic, but it’s nothing compared to the greatest gift of all, the gift of your love.
“You said you love me so much that it hurts, but that’s exactly the same as the way I feel about you. I love you so much. I want us to plan our futures together, regardless of whether or not I get into Bronx Science. I want you to be my boyfriend, and I’d like to be yours if you’ll have me.”
“Oh my god, Yes! Of course I’ll be your boyfriend.”
It appeared that Craig was about to kiss me, but then Mom shouted, “No you won’t be my son’s boyfriend. My son will not be gay! I won’t hear of it!”
“Dear, you can’t tell our son he can’t be gay, nor can you tell him who he can and can’t love,” Dad countered. “You can’t change that anymore than you can tell him he can’t be left-handed. You can’t change his sexuality any more than you can change his HSP. It’s not something that’s under your control, or his!”
“But I’m his mother and he’ll do as I say!”
The shouting between my parents only grew worse as they fought over my right to love Craig. Quietly, I motioned for Craig to follow me into my bedroom and we slipped away from the tempest in our midst.
“I think maybe I really should go, Simon,” Craig began after he closed the door behind us. “I realize now that I took advantage of you —”
“Don’t be silly,” I replied. “Lock the door and come over here. I want you to kiss me.”
“But what if your Mom comes storming in here?”
“That’s why I want you to lock the door. It doesn’t matter what your motives may have been. Mine weren’t exactly pure either. What matters is that now we know how we feel about each other, and that isn’t gonna change, no matter what my Mom wants.”
“But she could keep us apart!”
“My dad won’t let her, but even if she did, in three and a half years, you’ll be in college and I’ll follow soon after. What we do with our lives is up to us and as far as I’m concerned, we’re gonna go to college together, get married and live our lives together, ’til death do us part.
“Look, my mom was raised in a very conservative, right-wing Southern Baptist family in the heart of the Ozarks. She and dad met in college and got jobs in Branson, not far from where they grew up. The only difference between them is that spending a decade as a lawyer for the NYPD has exposed him to the underbelly of New York and in the process, he’s come to see the full spectrum of humanity. He’s undoubtedly worked cases involving LGBTQ clients and he’s been forced to see things from their viewpoint. Dad always says that you can’t be an effective defendant’s attorney unless you understand things from the plaintiff’s point of view. Dad understands who we are.
“With Mom, things are more complicated. I think the real reason she’s angry is that she’s losing control of me and she’s having trouble dealin’ with it. She always assumed that she’d be my caretaker for the rest of her life. She gave up a promising career in TV journalism because of me and she’s built her whole life around taking care of me. She never conceived of the possibility that someday I’d be able to take care of myself or that I’d find someone who’s equally important to me.
“So like I said, lock the door, come over here and kiss me.”
<> <> <>
I’d’ve liked to say my mom came to her senses and we all resumed our Christmas dinner, but that was not to be. Inside, I knew that Mom had a long way to go before she’d be able to accept that her son was growing up and didn’t need her so much anymore. Only then would she be able to deal with my being gay or with the fact that I now had a boyfriend.
Craig and I spent a long time making out that afternoon and then we settled in to watch a series of old Christmas movies in my room together, snuggled up on my bed, but fully clothed, just in case my parents came knocking on the door. Besides which, sex was just about the last thing on our minds.
The shouting in the dining room continued, well into the night. At one point Dad brought Craig and me each a plate of reheated food, but then the shouting resumed as soon as he left. After we finished eating, rather than incurring Mom’s wrath, Craig simply rinsed out the dishes in the bathroom sink and we got ready for bed.
I wasn’t sure how long Craig and I had been asleep when Dad again came knocking on our door. Craig threw on his boxers and let Dad in, and Dad told us that Mom had simply gone to bed and told him to make other sleeping arrangements.
“I’ll be upstairs in the dormer if there are any problems overnight. You can use the intercom or Craig can come up and get me.” Then noticing how I was propped up in bed using my elbows for support, he said, “Simon, you’re sitting up! I didn’t know you could do that on your own.”
“I’ve been able to do it for a while now, Dad, ever since I got the baclofen pump. There are a lot of things I can do for myself now.”
“Install an overhead lift on a track that runs between the bed and the bathroom and Simon could be nearly fully independent,” Craig interjected. “I’m pretty sure his insurance would cover the cost, too.”
“I think my independence is the real reason behind Mom’s anger, Dad,” I interjected. “She’s given up her entire life to take care of me, but even before I met Craig, I was doing more for myself and was less dependent on her. She hasn’t been involved with my schoolwork in years; she’s more of a proctor than a teacher. I do everything online and besides which, she’s hopeless when it comes to trig and calculus.”
“You’re already doing calculus?” Craig asked in surprise.
“It’s not that hard. It’s just the application of limit theory to algebra. Geometry’s much worse. I couldn’t study advanced physics without using calculus in any case.”
“Damn, Simon,” Craig responded. “You should ask to be tested for grade level when you get your acceptance to Bronx Science —”
“If I get my acceptance.”
“Oh, I’m sure you’ll get in, but I think you’d probably test at least at the sophomore level, which would be cool, ’cause then we’d be in the same grade.” I appreciated Greg’s confidence.
“I expect Craig’s right,” Dad threw in. “We’ve always referred to your grade level based on chronological years, but you’re way ahead in some areas. You probably could take advanced math and science courses and finish a year early.”
“You could maybe take dual credit courses too,” Craig suggested. “Get a start on college while you’re at it.”
“Your point about your mom is certainly true,” Dad added. “I’ve been thinking much the same thing. Yes, she was raised with conservative Christian values, but I don’t think that’s what’s behind her anger. The truth is, your mom’s jealous of Craig and the role he’s playing in your life. Without the need to care for you, she’s lost her purpose in life.”
“Once I start high school, there’s no reason for her to sit home alone all day. She should go back to work,” I suggested.
Sighing, Dad said, “It’s hard to break into journalism in middle age, especially on TV. Most reporters start right out of college with a small newspaper or news blog and work their way up. In this town, everyone wants to work for the Times or for one of the major television or cable news networks. Not that she isn’t up to the task and she’s not that old, after all. I just don’t think she’s up to starting over and then climbing her way up the ladder while competing with women half her age.”
“Maybe she could go to college and start a new career,” Craig suggested.
“Of course she should, but that would be a major undertaking and she’s just not ready to face reality yet. I can’t even raise the issue until she’s ready to hear it. For now, we just have to wait.
“I’m going to get ready for bed and then I’ll head upstairs to sleep. Don’t hesitate to call me down if you need anything. I’ll let you boys go back to sleep now, sleep being the operative word.”
“Believe me, I can remember what it’s like to be fourteen and the two of you are sharing a bed, and you’re practically naked if not naked, so you’re bound to be horny. I understand that you’re going to have sex, but please not tonight. When you do, you need to be discrete about it so that your mom can have plausible deniability that anything’s going on.
“Tomorrow’s the national Christmas holiday, so I have the day off. More time to do battle with your mom. I’ll do my best to keep you boys out of it. Maybe the rest of the week you two can plan to spend as much of it as you can out of the house. In the meantime, goodnight.”
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I would’ve liked to say that Mom came around by the morning, but if nothing else, she was stubborn. Throughout the week she avoided us and we avoided her. At least she didn’t try to confront us, which I gathered had something to do with Dad. In the mornings, Craig showed me the finer points of his culinary skills, preparing such gourmet meals as Pop-Tarts and toaster waffles. With a major bus route around the corner, all of the city was available and we took advantage of it. We spent the remainder of our winter break visiting the Metropolitan Museum, the MOMA, the Guggenheim and the American Museum of Natural History – all places I’d never been. They were awesome, especially the Hayden Planetarium.
We saw Manhattan from the top of the World Trade Center, from the new Summit observation deck at One Vanderbilt, which was even higher than the Empire State Building, and from the higher still Edge observation deck at Hudson Yards. We managed to get tickets to see The Nutcracker, the New York Symphony and a couple of Broadway Shows. Craig bought all the tickets and it wasn’t until later that I found he’d spent well over a thousand dollars for them. Holy fuck, where does a kid get that kinda money?
We visited Times Square, which was crazy, and Central Park. Who visits the Central Park zoo in the winter? We did! We sampled a variety of restaurants that served the best food in the city at affordable prices. We savored the best pastrami I’d ever tasted at Katz’s Deli, pigged out on the best cheesecake in the world at Juniors, feasted on bagels with lox at Zabar’s and had some of the best lobster bisque ever at the Mermaid Oyster Bar in Greenwich Village. Speaking of the Village, it was a real revelation to see same sex couples walking hand-in-hand, right out in the open. Even with the wheelchair, for the first time in a long time, I felt normal.
Before we knew it, we were watching the ball drop and singing Auld Lang Syne. Craig’s mom had the entire New Year’s holiday off, so we rang in the new year in her apartment and she even let us drink some champagne. I managed to sleep with Craig in his bed, without all my of my adaptive equipment, and we managed just fine.
Monday was a national holiday and the last day of Craig’s winter vacation. I’d planned to do something special for the day, but my mom insisted I come home; that we had something to discuss. Craig’s mom also had the day off and insisted on spending it with her son, so our special day together was not to be. Dad picked me up in our converted minivan so that I wouldn’t have to take the bus. Craig and I had been taking city buses all week, so I wasn’t sure what was the big deal, but I appreciated the ride nevertheless.
When I got home, we all sat around the dining room table and Mom began to speak. “Simon, I want to apologize for the way I treated you last week. I understand that you can’t control your sexuality and it’s actually wonderful that you’ve found a boyfriend. Craig seems like a very nice boy and I hope that unlike with most high school relationships, yours will last.”
“I’m not the only one who deserves an apology,” I pointed out.
“I’ll make sure we find the time in the coming weeks to have Craig over and I’ll give him a heartfelt apology myself. Your father and I spent a lot of time talking and I’ve come to realize that my anger was misplaced. I’d built my life around taking care of you. Now that you’re becoming more independent and you have a boyfriend to lean on, I need to wake up to the fact that you’re growing up and that our lives are heading in different directions. I need to have a life of my own, separate from you, and I’ve taken the first steps to that end.
“Cornell has a special program for people with college degrees in other fields to get a masters in nursing without having to start over. It’s an accelerated program that takes advantage of our advanced learning skills. Unfortunately, it’s too late to get into the spring semester, but I’m not ready for that anyway. I’m going to audit a few courses to get back into the habit of studying and then I’ll take the exams to get credit for them, and I’ll take some more courses over the summer. Assuming I can get in, I’ll start formal education in nursing while you start high school.”
“You’re gonna be a nurse?” I asked.
“I certainly have enough experience from working with you, and it’s something I enjoy. Nurses are in demand these days. Perhaps I’ll even get my nurse practitioner certification.”
Nursing. I would’ve never thought of that.
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The months passed so very slowly as I waited to find out if I got into Bronx Science. Craig and I spent most of our weekends together and he became a regular fixture in our house every Friday evening through Monday morning. He no longer needed to lug his duffel with him, as he had a full set of clothes in my bedroom. We became quite adept at every variation of making love one could think of and could no longer be considered virgins in any sense. It was a challenge to find ways of enjoying ourselves without kicking off my spasms, but then the experimentation was half the fun!
Finally, March arrived and with it a letter from the school board. I waited until Craig could be with me before Mom tore open the envelope and smiled. Grabbing it from her as best I could, I read what was inside. The letter noted my score and told me I’d be starting at the Bronx High School of Science in the fall. I pumped my fist into the air and shouted, “Yes.” It was a jerky fist pump, but the meaning was clear.
“What does it say?” Craig asked and asked again. “Did you get in?” I was way too excited to respond and so he grabbed the letter out of my hand and started to read it. He grabbed the accompanying sheet of statistical data and then finally said, “Didn’t you notice that you got the top score on the exam?”
“Let me see that,” Dad exclaimed as he took the letter from Craig. “He’s right, Simon. You scored higher than anyone else, including the ninth graders. Your score’s well above the second place score. They want you to come in for testing to determine the best courses for you to take, but anticipate that you’ll be starting as a sophomore. That’s incredible.”
“Congratulations, Simon,” Mom chimed in. “You studied hard and you earned your spot at Bronx Science.”
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Now that my going to Bronx Science was official, Craig insisted that I meet some of the other members of the chess team, who were the closest thing he had to friends at school. Unfortunately, they lived all over New York’s five boroughs and rarely got together outside of school and their chess meets. Craig thought it would be nice to celebrate my getting into Bronx Science with a chess party over the spring recess. Although I was much more adept at getting around via public transit than I used to be, it only made sense to hold the party at our house and so Craig and I gathered with some of his friends in our back yard. It also happened to be on my fifteenth birthday.
Dad fired up the grill and we feasted on hamburgers, hot dogs and roasted veggies, with Mom’s potato salad, coleslaw, baked beans and the usual picnic treats. Thanks to the Steadicam, I was able to eat all of it without the need for a bib or worrying about spilling any of it – at least not anymore than any able-bodied person would. We capped off the barbecue with a birthday cake that was decorated with a chessboard and topped with sixteen black and sixteen white edible chess pieces, half of them holding fifteen candles, plus one for good luck. I blew them all out in a single breath, but my most important wish had already come true.
After we’d filled our teenage stomachs and devoured the cake, we paired off and made use of the three chess boards Dad set up, side-by-side on a long table in the back yard. Everyone was fascinated by the roll-up chess board Mom and Dad bought me for my birthday. It met the official U.S. guidelines for reasonable accommodation in tournament play, making use of magnetic chess pieces that moved under voice control. Timed play was a challenge, but I was determined and much to everyone’s surprise, wickedly fast.
It was evident that for this group, there was no such thing as a friendly game of chess. These were serious players who took no prisoners – myself included. Not many people would understand that for us, although the competition was brutal, it was the height of fun.
After a while, Dad decided to take some pictures of us with his good camera – the one he used for official police business to photograph evidence used at trial. It was too late to photograph the cake or the opening of presents, so he settled for pictures of us at play at the chessboards and when we were just lounging around.
My favorite photo was one where Dad had Craig pose for a portrait with me. It was supposed to be a picture with Craig standing just behind me, with our friends slightly out of focus, in the background. Dad told Craig to crouch down so his head would be in the frame. However he lost his balance as his prosthetic leg went out from under him, just as Dad pressed the shutter, and instead he ended up laying on the ground. His head was in the frame but hidden from view behind my wheelchair. All that could be seen of my loving boyfriend were his legs. At least I looked good.
What a wonderful afternoon! My life was gonna be better than I could’ve ever conceived. Things were looking up.
Story first posted November 17, 2022, on IOMfAtS. Submitted for the “Things are looking up” story challenge, based on this picture (reproduced with permission under fair use).
The author gratefully acknowledges the invaluable assistance of David of Hope in editing my stories, as well as Awesome Dude, Codey’s World and Gay Authors for hosting them. The author is particularly grateful to IOMfAtS for hosting the “Things are looking up” story challenge and in so doing, raising awareness of persons with disabilities among the LGBTQ+ community.
Disclaimer: This story is a fictional account involving gay teenage boys. There are references and some graphic depictions of gay sex and anyone who is uncomfortable with this should obviously not be reading it. The reader takes all responsibility for the legality of reading this type of story where they live. All characters are fictional and any resemblance to real people is purely coincidental. As always, opinions expressed by characters in the story represent the opinions of the characters and are not representative of those of the author nor the sites to which the story has been posted. All medical information in the story is believed to be accurate; however, the use of gyroscopic gimbals for spasticity management has generally been much less effective than was depicted here. The author retains full copyright.