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My Disability Is Invisible. I’m Still Disabled.

After falling out of a tree, I experienced a traumatic brain injury that affected nearly every aspect of my life. So why is it so hard for even friends and family to believe I'm disabled?

Not long ago, an old friend and I were catching up at the coffee house we both used to work at. I had entered a Master’s program in Boston the previous year and was visiting San Diego to see friends and family. I ordered an ice tea and asked the barista if they wouldn’t mind setting it at the counter where we were seated. After sustaining a traumatic brain injury (TBI) a few years ago, I have trouble carrying any kind of liquid without sloshing it.

“Y’know, brain damage,” I casually mentioned to my friend by way of explanation; he knew about my accident and balance issues.

“You use that as an excuse a lot,” he carelessly replied, as if I had just said for the millionth time that a dog ate my homework.

Except it’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage. Since my traumatic brain injury, I’ve suffered from ataxia and poor fine motor skills. Carrying a glass of liquid without spilling it has become a pipedream; writing anything by hand is painful.

So how is it that even my friends, the people closest to me who know what I went through, could categorize that as just an ‘excuse’?

It’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage.

The answer, of course, is because the brain is locked away inside your skull, and it’s hidden from sight until it’s quite obviously not working right. And since my brain damage mostly exhibits itself in subtle ways, it’s easier for even smart people to brush off my trauma as an ‘excuse’ than to put themselves in my shoes.

But none of that makes me any less disabled, even if it took me a while to accept that fact myself.

Throughout the majority of my life, I was proud of how I communicated. There’s an ironically unspoken premium placed on the ability to communicate in our daily lives.  We take for granted our own ability to talk — how easily we can improvise a sentence. Or, at least, I did, until it was taken from me.

From a young age, I loved to read, even annotating books to tease out their meaning. I was a natural critic: I never had a problem explaining why I thought the way I did about a book. As a military brat, books were my constant friend; I’d take them up into trees in the backyard of whatever new home we’d move to, and while the day away, perched on a branch, devouring a novel in the shade.

I never stopped reading, and I never stopped climbing trees. When I grew up, I went off to the University of California, Santa Cruz’s campus (full of redwoods) to study literature. And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.

A close-up of the author’s eyes after surgery.

And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.

I ended up in a 10-day coma. After I woke up, the doctors told me I’d experienced a traumatic brain injury, with all of the complications therein. Over the next six months, I relearned how to walk (albeit with regular balance issues that persist to this day) and overcome a paralyzed vocal cord. Meanwhile, damage to my occipital lobe caused diplopia (double-vision) that was fixed with an eye muscle surgery nine months after my accident.

At first, everyone seemed to understand all of the initial physical issues because they could see them — I clearly couldn’t walk and my voice was barely a whisper. When I looked at someone, my unfocused eyes gazed past them, a something my friends and family lovingly called “eerie.”

Eventually, though, the symptoms of my brain damage faded away. They never quite disappeared, but they became easy to overlook, even if my brain itself was still damaged and healing. For example, if more than one person spoke at the same time, I couldn’t understand what was being said. If someone’s phone rang, it scrambled my thoughts and made it hard for me to keep my balance or walk.

I was still literally and figuratively unbalanced… but people didn’t really notice anymore. “I feel like Harrison Bergeron, that Kurt Vonnegut character that has his thinking interrupted with loud noises pumped into his head,” I once told my boyfriend; he looked at me blankly, and suggested we go to a bar, oblivious to the fact that cacophony was the last thing I needed. Plus, dodging stools in dim lighting with my balance issues? Yeah, no thanks.

The author in her hospital bed during her 10-day coma.

Besides walking and disruption from sounds, I often struggled to find words and found myself tongue-tied. I’d mean to say one thing, and say the other, or else smash together two unrelated words into a nonsensical portmanteauPeople corrected me all the time, and if I struggled or stuttered mid-sentence, they’d attempt to finish my sentences for me… often incorrectly For someone who prided herself on her ability of self-expression, my aphasia mortified me.

There are other symptoms too. Because of my balance issues, I now get chronically car sick, and can no longer legally drive. The abilities I do have take a nosedive if I don’t get a full eight hours of sleep, including my balance and spatial awareness.

Even so, the closest people to me regularly forget that I have a brain injury. For example, during a road trip to San Diego with my mom in which I was playing navigator, I once forgot the word ‘left’ when she asked me which way she needed to exit the freeway. Instead, I stuttered and frantically pointed where she should go. “I can’t look at you when I’m driving,” my mother snapped. “If you can’t give me directions you can’t sit up front and you’ll just have to sit in the back and be sick.” At the end of the day, she would find where we were going and forget about the difficulties of getting there; a year later, I’d still remember that car ride and the burning shame I felt after.

Why is it so hard for others to accept that I am disabled? Perhaps it is partially because I have had trouble accepting it myself. For years, laughing at my shortcomings and saying I was ‘brain damaged’ was my way of flippantly avoiding the hard truth that I am disabled, and this is my life now.

You can’t expect other people to accept your disability if you can’t accept it yourself.

Now, entering my fourth year of recovery, I can admit with conviction I’m disabled. But my friends and family still often act skeptical, telling me I don’t look disabled, as if every disabled person looks similarly. These days, when someone doubts my disability, it’s easier for me to show them my subway pass with the handicap symbol in the corner than try and convince them.

Even people close to you can sometimes forget you’re disabled if you don’t advocate for yourself.

And that’s wherein the problem lies: I can’t have a doctor following me around all the time saying, “Yeah, she’s disabled. Believe her.” When a disability is invisible, it can be ignored or trivialized at convenience by everyone, even the people closest to them. So it’s up to me to be my own advocate: telling people, for example, when a bar is too loud for me, and forcefully correcting people who accuse me of using my brain damage as an ‘excuse.’

Because if there’s anything I’ve learned from all this, it’s that you can’t advocate for yourself if you’re living in denial about the ways in which your life and abilities have changed.

After all, you can’t expect other people to accept your disability if you can’t accept it yourself.

Profiles

Sex Ed With Brain Damage

Even with brain damage, Megan Andelloux has a real knack for getting people to talk about uncomfortable things.

“When I do something, I do it until I kill it.”

Her whole life, Megan Andelloux was the most self-assured person in the room. As a college student, her friends–sensing her confidence–would come to her, asking questions about sex they were embarrassed to admit they didn’t yet know the answers to. Embracing the role, Megan went on to make sex education her career, working at Planned Parenthood for eight years, and eventually founding the Center for Sexual Pleasure and Health (CSPH), an organization dedicated to reducing shame around sexuality.

Yet when Megan began exhibiting symptoms of a mysterious brain disorder in 2015, she found herself at a loss for the first time in years. For someone who has spent her life being the most self-assured person in the room, her current situation has forced her to face uncertainties both about her future as a sex educator, as well as her own mortality.

Luckily, Rhode Island-native Megan Andelloux, 41, has always been interested in the subjects that others swept under the rug.

Megan Andelloux has spent her whole life educating people about subjects others sweep under the rug.

She jokes that she began her career in sexual education to spite her parents, who never spoke to her about sex. In Mitchell College, she found that while all of her friends had the same sex questions–from how to use sex toys to how have sex without pain–no one was asking them openly. Instead, they came to Megan, who at the time was studying Marine Biology. Friends came to her feeling lonely and scared because they felt that they couldn’t talk about their sexual experiences, whether violent, intimate, or awkward in nature. Megan understood; she had felt the same way herself after being sexually assaulted a few years prior. At that time, she was encouraged to keep the assault hushed, which only isolated her. So she made it her mission to make sure her friends had the support she felt was denied her.

By the end of freshman year, with so many friends coming to her, Megan got the hint: she switched to a Human Development and Family Studies major, with a minor in human sexuality. After completing a B.S. in that department at University of Rhode Island, she joined Planned Parenthood, lectured at Ivy Leagues from Harvard to Princeton, became director of education at a feminist sex shop, and even wrote her own book, Hot and Fast, which aims to unstigmatize the quickie.

But in 2015, Megan’s career as a sex educator evolved into something more profound: end-of-life education and care.“I really thought sex education was the Wild West for a career. Nope,” she says. “The end-of-life thing makes sexuality education look like becoming a kindergarten teacher.”

I really thought sex education was the Wild West for a career.

Through her work, she began meeting with patients who had breast cancer, often terminal. She felt a sense of familiarity with the patients she was meeting. Megan says: “I had created a lesson plan for the women with cancer asking them, ‘Who did you tell when you first had sex? Who did you tell when you first found out you had cancer? What were the similarities in terms of choosing in whom to disclose? How long did you wait?” She discovered “there’s a lot of overlap” between sex education and death-related education.

One of Megan’s fascinations is consent, a topic that has gained lots of popularity with regards to sex. When she began working with dying people, she realized how our framework of consent could not easily be applied to people with brain damage, because partners cannot know for sure if they are in the state of mind to be giving consent. She also recognizes that proper communication about sex or death can often be left until the last moment, when someone is already dying or having sex– if any conversation happens at all.

Perhaps her sudden interest in death and illness was her body trying to tell her something: around the same time, she began to notice changes in her mental state. She suddenly had trouble with numbers and remembering dates,  occasionally showing up to events on the wrong day. Long emails became more difficult for her to read. Finally, after not being able to read a plane ticket or understand where she was, Megan decided to go see a doctor.

With brain damage herself, Megan now concentrates her studies on the places where sex and death intersect, like issues around consent.

She waited. The tests came back without clear results. Using verbal and spatial tests, her doctors were able to map the changed behavior and place the damage within her frontal and temporal lobes, but “it’s not something that can be seen on a scan.” While Megan does not have an official diagnosis, her symptoms are similar to someone who has dementia, so she finds community in dementia and Alzheimer’s groups, both online and in-person.

In 2015, Megan went on medical leave from her work at CSPH to focus on her brain. By then, she was very involved in her volunteer work as at a local hospice. Despite close daily reminders of her own mortality, she found that volunteering to care for the dying “was a way to try to give back and not just take up space.”

She spent three years working with doctors to try and find an answer, but by the beginning of 2017, she decided she couldn’t work with them anymore. “If I [kept] going down this road,” she says with a sigh, “I might not [have survived] it. Just continuously going and looking for an answer just became exhausting.”

“[My partner and I] went through a long period where we would be like, #braindamage…”

Despite the fact that she still doesn’t know exactly what’s wrong with her, Megan tries to treat her illness with humor. “[My partner and I] went through a long period where we would be like, #braindamage,” Megan laughs. “I think it’s important just to name what it is. This is happening. Let’s not ignore it.” It’s the mentality that got her into sex education, the mentality that once got her through a sexual assault, and the mentality that she hopes will get her through her illness: never let facts be hidden, just because they might be uncomfortable.

With her brain damage worsened, and on perpetual leave from the medical world, Megan now aspires to be an end-of-life doula. It’s a role with a surprising intersection with sexuality: as people get closer to death, they begin to lose many of their inhibitions about sex, especially if they have brain damage.

“A lot of times within the literature, [experts will] talk about hypersexuality,” she says. After being in the [dementia and Alzheimer’s] communities I don’t think that this is hypersexuality. I think that the social appropriate filters disappear and we’re actually just seeing what people are thinking.”

Even though Megan has to some extent cloistered herself off from sex education, she plays a vital role within her new communities, talking about sex openly, just, as she has always done in the past.

The problem with both death and sex, says Megan, is that people don’t view them as parts of their lives, but taboos that need to be shied away from. It reinforces stigmas about two of the most natural things in the world, everyday parts of our lives that should be examined and embraced.

That’s why, when she dies, Megan wants to give everyone at her funeral a sex toy, “with the caveat that they have to put it somewhere obscure in their living room so when guests come over…maybe they will see it out of the corner of their eye.” If the guest mentions it, she hopes her friends and loved ones will say: that’s in honor of Megan. She had a real knack for getting people to talk about uncomfortable things.

Profiles

The Art Of Coping With Brain Injury

Dutch artist Tom Heerschop aspired to be the greatest artist since Leonardo Da Vinci. Then he developed a brain tumor the size of a sweet potato.

In 2008, Amsterdam-based artist Tom Heerschop was in his kitchen on his son’s sixth birthday, about to cut the cake, when he felt a violent pressure in his head. “My head felt like a train was arriving, and I had to catch that train,” Heerschop says. “I ran downstairs. I heard strange sounds and smelled strange smells. I thought I’d gone completely crazy.” Outside, he had a seizure, his first. It lasted for 45 minutes.

After waking up in the hospital, Heerschop asked for an MRI scan. Doctors in the Netherlands don’t automatically administer MRIs to patients suffering from seizures, but Heerschop insisted. One month later, a scan revealed a benign tumor, the size of a sweet potato, in Heerschop’s brain.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says. Finally, “everything made sense.” For ten years, he had been afflicted with severe depressions, violent outbursts, migraines, and personality changes. He illustrated these afflictions in his daily “Depression Diary.” In self-portraits from the diary, the artist’s brains explode out of his head, his face is pocked with greenish boils, his eyes are black caverns. Though he tried everything from psychoanalysis to singing bowl therapy, none of his symptoms responded to treatments. When the tumor was discovered, Heerschop realized, for the first time, that his psychological condition had a physical cause.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says.

Growing up in Bussum, a town 20 minutes from Amsterdam, Heerschop loved to draw. “As a kid, I was in my most natural habitat when drawing,” he says. “It made me quiet and happy. Everywhere we went, I had my little notebook.” He attended a Waldorf School, known for its encouragement of children’s creativity. At 16, he started taking weekend painting courses, and by 18, had his own atelier. At the Rietveld Academie Amsterdam, a prestigious fine arts university, he studied photography, drawing, design, and painting, and graduated in 1996. Shortly after, he got married. He felt like he was at the top of his game, “in control, at ease,” and that showed up in his artwork: Crisp pencil drawings of barns, trees, and silos; quietly surreal ballpoint illustrations of bakers baking bread.

But when he was 25, getting his master’s in art at the Sandberg Institute, Heerschop felt his psyche shifting. He began to experience depressions of a depth he’d never felt before. Crushing headaches led a doctor to prescribe him painkillers. And though he’d “always been gentle,” he started to hit his wife. At one point, he broke her shoulder bone. “I knew something was going on, but I didn’t know what it was,” Heerschop says.

One of Tom Heerschop's larger murals, completed before his diagnosis.

One of Tom Heerschop’s larger murals, completed before his diagnosis.

At his wife’s urging, he tried various forms of therapy: Psychoanalysis, rebirthing sessions, hypnotherapy, acupuncture, tai chi, relationship counseling. “Therapists tried to figure out what was wrong with me—they asked about my parents, my childhood, work-related stress, stress with my former girlfriend,” Heerschop says. “It never stopped, and none of it helped at all. That went on for ten years.” Over those years, Heerschop and his wife had three sons. At first, he was a gentle father, but soon became temperamental and violent.

Drawing was one of his few non-destructive outlets, and he was wildly productive in the studio. He made more than 100 works a year and appeared in solo and group exhibitions in the Netherlands and Italy. “A drawing a day keeps the doctor away,” he wrote of his “Depression Diary,” begun in 2000. Some work from this diary is psychedelic, lighthearted, in fauvist colors: A fuzzy stuffed penguin and a ginger cat are recurring characters. But much of it is tortured: A man in a crown slices his own head off with a kitchen knife, his black ink guts spewing; webs of paint smother the faces of sickly men with purple eye bags; an Easter rabbit with a basket of eggs gropes a nude woman; a horned demon sits in a wheelchair; a pink body curls on a cot in a jail cell. Compared to the quiet, controlled drawings from Heerschop’s college years, these works suggest psychic chaos.

“Not once did anyone come up with the idea that maybe all my problems had something to do with something inside my body, instead of my personality,” Heerschop says in a 2013 TEDx talk.

By the time the tumor was discovered in 2008, it had been growing in his brain for at least ten years. It was a millimeter away from his ear and a millimeter away from his eye. If it had gotten any bigger, he would have gone blind and deaf. “At first, I thought I was going to die, but doctors assured me I would survive,” Heerschop says.

The operation that removed the tumor left a scar shaped like a backwards question mark curving from his hairline down to his ear. Though recovery from the surgery was tedious, “I felt born again, for a while,” Heerschop says. “It felt like a new start.”

But there was no happily-ever-after to follow. Even after the tumor was removed, Heerschop still struggled with erratic behavior and strange symptoms: Headaches, memory loss, fatigue, irritability, aggression. Sounds overwhelmed him. And, when he returned to the studio to draw, he felt slow and stuck. “In the past, when I made drawings, it was like opening a never-ending stream,” he says. “Now, this stream had dried up.” After Heerschop waited eight months for an appointment at a neuro-rehab center in Amsterdam, a neurologist diagnosed him with Acquired Brain Injury (ABI) in ten minutes. The tumor had done considerable damage to his frontal lobe.

Tom Heerschop as seen on his official website.

Tom Heerschop as seen on his official website.

An intensive neurorehabilitation program educated Heerschop about ABI and taught him coping mechanisms, like mindfulness and body scan exercises, which he now does for 35 minutes a day. “It leaves me feeling completely reloaded,” he says. “I’m trying to draw with more mindfulness.” But the damage is irreversible, and challenges persist. About every three months, he has a seizure. After working for 45 minutes, he’ll have to rest or take a nap. “Thinking is tiring. If a child is talking while the TV is on, those sounds together are too much for me.” But for the first time in his life, he knows the cause of these symptoms, and has a support system that helps him manage them.

After the surgery, Heerschop and his wife split up. Two and a half years ago, he reconnected, via Facebook, with Bregje deVries, a former girlfriend, whom he’d fallen in love with while “young and kind of restless.” Now, “less restless,” he lives with DeVries, an educational scientist, who acts as his agent and helps him manage his medications and schedule.

In a way, this disease helps me to be much more reflective in everything I do.

“In a way, this disease helps me to be much more reflective in everything I do,” Heerschop says. “So many people just go into work and work too hard to earn money and come home and don’t think about it. I really have to think about the worth of everything I do.”

Heerschop’s life story is front and center on his interactive personal website, designed earlier this year by Utrecht-based Studio Airport. In a black-and-white video loop, the artist stares out from the homepage, blinking, occasionally laughing or scratching his nose. When you click on his head, animated fragments of his drawings pop up: A purple lizard-creature flicks its tongue; a bug-eyed bluebird peeks into the corner; a bonfire sprouts from Heerschop’s forehead. “There was only one way to make this site: Putting Tom’s photograph as the front door you have to go through to get to the work, entering his head and following all the series of works that sprang from it through the years,” deVries says. Nearly 1,200 of Heerschop’s artworks are displayed in chronological series from 1996 to 2015. Together, the series of drawings tell the story of his illness from the inside out: You see the evolution from crisp, controlled monochromatic still lifes, to scrawled stream-of-consciousness works in riotous color, to drawings about the tumult and excitement of early parenthood, to the depression diary, to hallucinatory works made while recovering from surgery, featuring cross-sections of brains and slinkies popping out of skulls.

One of Heerschop's later drawings, made as he recovered from brain surgery in 2012.

One of Heerschop’s later drawings, made as he recovered from brain surgery in 2012.

Before his operation, Heerschop averaged one drawing every two days; now, he’s lucky if he finishes one in three weeks. Instead of aiming to match the machine-like output of his earlier years, he’s changed his approach, experimenting with large-scale, ongoing works. “I let go of the idea that you can finish a drawing. It’s much more difficult for me to make one single image—that blocks me, in a way,” he says. “I’m now trying to find a way to make endless drawings.” His most recent work, a nearly 30-foot long panorama in black marker on white paper, took four months to complete. Featuring serpents and phalluses emerging from flames, bodies with giant eyeballs for heads, missiles with legs, and fractal-like arrangements of pencils, it was an abstract response to the terrorist attack at Charlie Hebdo in January 2015.

“I’m not yet in a place where I’m making my best work after my operation,” Heerschop says. “He’s always doubting his work,” deVries says. “But I’m his biggest fan.” Despite the perilous setbacks, he doesn’t plan on retiring any time soon. “Drawing is more than a job— it’s my love, it’s my blood,” Heerschop says. “I’m gonna draw forever.”