Body Talk Read online

  When my mom was fifteen, she became a mother for the first time. She was a little older than I was that morning in the bathtub. She would tell my sisters and me that she loved us and also that she hadn’t been ready to be a mom when she became one. She would remind us that we could choose whatever we wanted for our future, that we were individuals, that our bodies belonged to us. In other ways she would also remind us that the world had ideas about who we were. Whether she was praising or critiquing us, there was always a harshly earned knowledge about what it meant to have a Black femme body in this world.

  My heart and body were mine, and they also belonged to a line of women whose bodies were abused, overworked, sexually violated, and stigmatized for generations. Yet they still found pleasure in love, dancing, and expressing their beauty through intellect, movement, and adornment. My heart and body were mine, yet walking around as a teen girl felt vulnerable, scary, and depressing.

  Over the years, my body has experienced my life with me and absorbed my feelings about myself. And I have underloved, disrespected, hated, disregarded, and harmed myself. I have starved myself for thinness and eaten until the point of vomiting when I was pushing down my feelings and anxiety. I have hated and critiqued my body and believed that was the right relationship to have with it. I have desired to contort into a form I believed would be more lovable to this world. I forgive myself every day for this and try my best to replace these feelings with sweetness today.

  Healing is traveling back in time to meditate and love on the spirits of my younger selves and my ancestors. The selves who struggled with worthiness and violence so that I could love myself and accept the individuality of my existence and magic. I look at pictures of myself at different ages: five, nine, twelve, fifteen. I look at my selves, my Black and dreaming selves, and see the insecurity and doubt in my eyes. I speak lovingly with my younger selves and tell them they were always deserving of love, from myself and this world.

  My body has been a sacred shape-shifter and a devoted temple to my beingness, and I haven’t loved it as much as it deserves. It has danced until the sun came up and run from danger and fought for my sisters and me when I couldn’t run. It has flung itself into the sky, submerged into deep oceanic waters, and tasted some of the most delicious meals the planet has to offer. My body has experienced pleasure and cruelty from lovers and myself. It has held my emotions, my undeniable and passionate truths, and the parts of me that need to be heard.

  My body has been a vessel for those expressions.

  These days I ground myself in meditations of love for my body, my face, my spirit, and my soul. I take time to look in the mirror and practice acceptance of myself. I look at my whole body and drink myself in slowly. I practice redirecting my spirit to loving on me. I seek to unlock portals of pleasure, peace, and insight that I deserve to experience on behalf of my ancestors. In these meditations I think about that seed of self-love my mom planted in me that early morning in the bathtub in the ’90s. When I barely knew my body. Today, I smile to myself, grateful for her gift and the mantra to love on my body with unbelievable inquisitiveness and reverence.

  I often say I was always the tallest, fattest, loudest person in every classroom growing up. I very deliberately use the word fat for a few reasons, but mostly because it was weaponized against me for so long, and there’s power in words, so why not take back that power? If I just stopped living in fear of being called fat, then anyone who might use that word to hurt me would have no power over me. So anytime I talk about my body, I like to make it clear that I use the word fat and I use it on purpose. If the word fat offends you, I’m sorry. But I do hope you’ll consider doing the emotional and mental work it takes to reframe that word.

  Whether or not you cringe thinking about what’s going on down there,

  it’s important to talk about reproductive health. Whatever your gender, your genitals and reproductive organs can do things that are weird or uncomfortable, as well as awesome or pleasurable.

  Sometimes menstruation can be painful enough that it impacts everyday living. Sometimes having testicles means that there’s a chance of discovering a cancerous lump at a young age. Though we don’t talk about these things enough, we should.

  Let’s get comfortable with being uncomfortable and talk about what’s going on below the belt. These discussions can—and do—save lives, as well as offer compassion and connection for those who can too often feel alone when struggling with their own reproductive health.

  Please Laugh: My Cancer Diagnosis

  by Benjamin Pu

  I have testicular cancer.

  Please laugh.

  A few weeks ago, I went to my doctor for an annual physical exam. It went well. I had lost over twenty pounds since coming to the city (walking, eating right), my blood pressure was good, and my cholesterol was low. Then, we get to the part most guys are uncomfortable with. As it happens, the “turn your head and cough” joke is real life. But then my doctor paused. He found a lump.

  He told me to see a radiologist as soon as possible.

  Last week, I went to a midtown radiologist, had K-Y Jelly slathered all over my nether regions, and got an ultrasound by a very nice lady.

  The results came back the same day. Cancer.

  But not scary cancer. Ball cancer, the funniest of all the cancers.

  Seminoma is the medical term for a neoplasm (new growth or tumor) that begins in, you guessed it, the testicles. Testicular cancer is the most common type of cancer for men between the ages of fifteen and thirty-five. It’s easily treatable if caught early and has a 95 percent survival rate. So I’m good—I ain’t gonna die because of no ball cancer.

  The good news is that we may have caught it early. But we only caught it early because I went to the doctor.

  I joked to my doctor that I touch my testicles all the time, and I didn’t feel anything. I never paid attention to those PSAs about touching your junk to check for cancer. Cancer? Not me, I thought, so I’d rather touch my testicles for fun!

  But unfortunately, it’s all too real now. If it weren’t for my doctor’s medical expertise, I might not have known until it was too late.

  If you have testicles but haven’t gotten a physical exam in a while, or if you know someone who has testicles that has displayed a flagrant disregard for their medical health by not seeing a doctor recently, I have a message for you: get your fuckin’ nuts checked.

  Do your nuts have to be felt up by your doctor to find lumps or irregularities? No! In fact, the Testicular Cancer Society recommends that you do a self-exam every month. Feel yourself up in the shower. But do it properly, medically. I didn’t do a monthly self-exam, and I may be paying some price for it.

  As you may have noticed from the last few paragraphs, I’m taking this rather well. In fact, I’m joking about my diagnosis. Please don’t be mopey around me, it makes me nervous. Frankly, I’m glad I can have such a positive attitude about this. Everyone copes in their own way, and I’m very happy that my natural instinct is to crack jokes and laugh at the phrase ball cancer.

  Every single person I’ve confided in so far has the immediate reaction: “Oh no! Ben!” Which is a perfectly reasonable, normal reaction to have. And then they look sad. Which is why I immediately follow up with a joke about my balls. And that makes them feel better. And in a weird, fucked-up kind of way, it makes me feel better, too.

  Still, am I scared? You bet I am.

  This experience has been a whirlwind of firsts. I’ve never had a CT scan before; I have to go in tomorrow morning to check my lungs and lymph nodes. I’ve never thought about the possibility of not having children; I might have to freeze my future ones. I’ve never had so much blood drawn to run tests before. Also, I’ve never had cancer, so this is definitely a first.

  I’ll be honest, I’m having some trouble sleeping at night. I keep thinking about the operation I’ll have to undergo
(spoiler alert: it does not look like fun). I keep worrying about how much time I’ll have to take off work. And I have to face the frightening possibility of undergoing chemotherapy and having my facial hair fall out. A tragedy!

  But I’m a lucky one. The real tragedy would be someone else finding their cancer too late.

  I’m making this public because:

  1. Testicular cancer shouldn’t be a taboo subject—after all, it is still cancer;

  2. It’s important for men to understand that testicular cancer is a very real possibility and you should get checked;

  3. I’m an attention-grubbing loser. Give me a little slack, I have cancer!

  If you’re a man, touch yourself. If you know a man, get him to touch himself too. It might save his life.

  And if you’ve got a great nut joke, please message me. I could always use a good laugh.

  This piece was previously published on BenjaminPu.com.

  Kindred by Kelly Bastow

  Your Complete Guide to Shane’s Sex Life

  by Shane Burcaw

  Society has a disturbing infatuation with my sex life, and I’m not saying that in a Donald Trump “Everyone is so obsessed with me!” kind of way.

  My blog has always had a feature that allows readers to anonymously ask me anything they want to know, and by far the most common questions are about my bedroom business affairs and the functions of my reproductive system.

  Initially, it tickled me to respond to these questions publicly, because everyone seemed so impressed that “someone like me” could and did engage in sexual activity. I felt special, like a rare breed of the disabled population who had overcome the social stigmas surrounding disability to such an exceptional degree that I was worthy of sex. This, I later realized, was completely inaccurate, immature, and idiotic.

  Sex and intimacy for people with physical disabilities is just as common and diverse as it is for any subpopulation of people. My desire to see myself as special or better than others in that sense was nothing more than a childish effort to bolster my insecurity-ridden ego.

  Nonetheless, the general public’s deep curiosity about my sexual abilities suggests there is an overwhelming lack of understanding regarding this issue. In an effort to clear up some of the confusion, here are a smattering of questions I’ve been asked by real people, as well as responses that I’m refreshing for the purposes of this book. Keep in mind, my experiences, shortcomings, methods, abilities, and inabilities are not meant to be representative of the disability community, the wheelchair-user community, or even the SMA community.

  And now that I’ve belabored the point long enough to guarantee I won’t receive angry reviews for this chapter, I will begin.

  People have asked me:

  “Do you have a penis?”

  Yes, six of them, actually. Every time one of my major muscle groups begins to weaken because of my disease, I grow an additional penis. It’s an interesting—albeit rather useless—perk of spinal muscular atrophy.

  “Can you get a boner?”

  I can! They’ve been coming in heavy and healthy ever since puberty hit, and I guess even earlier than that, but prior to puberty I had no idea what they meant. When I was a little kid, I used to get them while lying facedown during physical therapy because of the way my groin pressed against the floor. That always made for an awkward surprise when the therapist rolled me onto my back for a new stretch. And that’s a detail I’ve never shared with anyone until I wrote this book!

  From what I understand, even though the penis contains muscles, the act of a boner rising to attention is more about blood rushing to that area of the body than muscle strength. My disease does not affect my blood flow.

  “Do you masturbate?”

  I wish I had kept a count of how many people have asked me this question through my blog. People question me about this so often that it’s baffling. I try to imagine someone reading my blog—stories about breaking my femur, getting pneumonia, fearing death, going to the beach, etc.—and after all that information, the one thing they just need to know about me is if I fondle my own penis. Not that our lives are remotely comparable, but this feels akin to reading a biography on Abraham Lincoln and coming away from the experience wondering only if he became constipated very often throughout his lifetime.

  For all you perverts, I had the ability to masturbate until I was about eighteen years old. The trickier part of the whole process was the cleanup, which involved pretending my nose was running so that someone would give me a bunch of tissues. Throughout my teen years, I was plagued with a constantly running nose, or so it seemed.

  When my arms and hands became too weak to continue this activity, my dignity took a hit. It felt like I was losing part of what made me a valuable man. I took solace in the fact that my penis worked, and that in the grand scheme of things, being able to jizz in a clump of tissues wasn’t the most important ability.

  “Can you/do you have sex?”

  I can and I do, although my physical structure and ability requires some adaptation in the process. First, since I know my grandparents are reading this, I’ll explain how my disease complicates standard, basic, run-of-the-mill sex, and then I’ll share why I believe my disability actually improves sex and intimacy for my girlfriend and me.

  As I’ve already established, my dick itself works phenomenally. The complications, then, are related to my muscle contractures. My body is stuck in a pretty rigid shape. When you don’t use your muscles, they shrink, and eventually they become permanently tight. When I lie on my back, my body remains frozen in the sitting position, like a capital L tipped on its side. To imagine this, lie on your back and pull your heels up until they touch your butt. Perfect, now you’re me!

  The fact of the matter is that having sex requires certain parts of the body to be very close to each other, and when one of the participants is a crumpled mess of atrophied rigidness, that closeness can be tough to achieve. My partner can’t simply hop on top of me, because if she did, my legs would smash into smithereens, and I suspect that would take some of the pleasure out of the experience.

  Making love, then, becomes about finding positions that work. This often involves lots of bending, twisting, and contorting, which is why I only date gymnasts. My girlfriend and I have found some methods that work for us, and while we might look like a pair of grappling spiders, all that matters is that we’re both enjoying the experience.

  Early on it tortured me that I couldn’t be a “better” sexual partner. My head was filled with damaging ideas about the importance of a man being able to perform in bed, and at times in my life, I was convinced that no woman in her right mind would ever want to be intimate with me. But as I became older and more experienced, I began to realize that intimacy in a relationship is so much more about the emotional connection than the physical one. SMA actually strengthens that aspect of my relationship. Having fun together physically requires us to communicate and listen to each other, which in turn makes us both much more aware of the other’s pleasure. We’ve discovered that using our hands and mouths (and toes) is just as much fun as The Sacred Act. Once I abandoned the idea that sex needs to conform to society’s narrow and ignorant guidelines—man dazzles woman by how hard and strong and fast he can gyrate his hips into hers—my sex life became much healthier and more enjoyable.

  “Can you have children? Will they inherit your disease?”

  Spinal muscular atrophy is a genetically transmitted disease, so there is a chance that any Shane Juniors I create will have the disease, but the likelihood of that happening depends on whether or not the mother of my kids is herself a “carrier” of the disease. One in forty people carries the genetic mutation that causes SMA. My parents, although they don’t have the disease, are each carriers, which meant there was a one-in-four chance their kids would get it. It gets real science-y if you want to know more about it than that.

 
My plan is to have enough children with SMA so that our family outings look like some sort of day program for people with disabilities.

  This piece was previously published in Strangers Assume My Girlfriend Is My Nurse by Shane Burcaw.

  The Blood on Their Hands

  by Anna-Marie McLemore

  It begins with them looking inside me.

  A scan of my body reveals a uterus so mutated it might qualify me for admission to Charles Xavier’s School for Gifted Youngsters. The doctor draws a diagram of its topography on the back of a notepad left by a pharmaceutical rep. The cheerily printed logo in the upper corner is probably meant to suggest a life of playing with puppies and blowing out birthday candles. Instead, it just makes me think of the list of side effects announced, fast as an auctioneer’s call, at the end of every commercial.

  From that drawing—and this is the way I will remember it when I can’t remember the name of my uterus’s exact condition—it seems shaped like the locket my grandmother left me.