Neurological & Cognitive Disorders

How VR Is Helping Autistic Kids Make Sense Of The World

Critics say VR teaches kids to be asocial. But one company is using virtual reality to teach special needs kids how to better interact with others.

Richie Jackson, a high school student at Celebrate the Children in Denville, NJ, twirls in his chair waiting patiently for the virtual reality (VR) headset. He smiles broadly placing it over his head and adjusting the strap.

Prior to using the headset, he had trouble sitting still.

“He took to it immediately,” said Stefanie D’Amore, counselor at the pre-K-12-plus school for children with autism and other special needs.  “He had trouble self-regulating his behavior and with communication. Floreo’s Virtual Reality program has helped him and other students in the school.”

The students are calm and focused. They look forward to their 15-minute VR sessions.

How VR Can Help Teach Social Skills

D’Amore believes it works because users can control the settings and do stuff that’s difficult to do in real life. Programs teach students how to look both ways when crossing the street, an important lesson for many children with autism who have been known to dart out into traffic without looking.

A student with autism at Celebrate the Children in Denville, NJ tries out VR.

With the headset on, students are taught to pay attention to objects around them, to follow rules, and to feel safe. “They do this in the virtual world and apply it to the real world,” D’Amore said. “For instance, there’s a core deficit in social skills for many people with autism. In one of the programs, our students learn how to communicate with a police officer.”

In tense situations, a police officer may not understand all of the signals coming from someone with autism. Some won’t make eye contact; some have limited or no speech, and some won’t follow directions. For instance, if an officer of the law asks a student to take his hands out of his pockets, the student may refuse or runaway.

These behaviors are known to many in the autism community, because they understand how quickly interactions can escalate. A recent study found one in five young adults with autism will be stopped and questioned by the police before age 21. About five percent will be arrested.

“Children using VR feel empowered. It makes them look at the world in a whole new way.”

Vijay Ravindran created the VR program used at Celebrate the Children. His company, Floreo, was developed soon after Ravindran’s son was diagnosed with autism at age 2. “He’s my inspiration,” he said. “Children using it feel empowered,” he said. “It makes them look at the world in a whole new way.”

“My wife was the one who made the connection that VR could be used as a medium for coaching skills and eventually used in therapy. I’ve learned the autistic brain has neurological differences that can present different strengths and challenges. It makes it difficult communicating with others and with focusing attention in group settings. The goal was to create VR lessons that could build communication skills.”

Vijay and Manoj Ravindran.

Students at Celebrate the Children have been using Floreo’s VR program since 2016. They’re part of a pilot program. Floreo is also used at other schools, in therapy practices, and in homes where parents are using it to help their ASD (Autism Spectrum Disorder) children navigate its many programs. “Our lessons are science-based, Ravindran said. “We are currently running several research studies including a collaboration with the Center for Autism Research at Children’s Hospital of Philadelphia (CHOP) and the National Institutes of Health (NIH).”

The Littlest Salesman

Scientists at CHOP partnered with Floreo thanks to an NIH grant to test the program. According to Julia Parish-Morris, PhD, and lead researcher on this study at CHOP, “Autistic teens and adults practicing interacting with police officers, exhibit differences in eye contact, which could be misinterpreted as avoiding questioning or looking for a way to escape. The VR intervention gives participants the opportunity to practice these social interactions and a range of appropriate responses, which we know is important for people with ASD.”

Ravindran’s son is nine years old and works the sales floor at an exhibit where Floreo’s small team shows off its programs. “He’s our most enthusiastic sales person,” his dad proudly said. “He even holds kid’s hands who try it out. Fortunately, he hasn’t asked for compensation yet.”

“Our catalogue is growing. We have more than 70 lessons from building eye contact to how to interact with peers to ways to self-regulate to avoid meltdowns. VR has so many uses.”

Neurological & Cognitive Disorders

Mourning Luke Perry As A Gen X Stroke Survivor

If Luke Perry's death teaches us anything, it's that no one is too young to have a stroke.

When Luke Perry died earlier this month after a sudden massive stroke, I felt like I was mourning my first boyfriend. This despite the fact that that boyfriend–Beverly Hills 90210’s poetry-reading, Porsche-driving heartthrob Dylan McKay–didn’t exist beyond the TV screen.

Still, the loss felt immense and hit surprisingly hard. Not just because I came of age when 90210 was still on the air, but because I too had a stroke at an early age. In my case, it was in my mid-40s, but while Luke Perry died from his stroke, I lived.

Like many Gen Xers, I religiously watched 90210 when it was on the air in the ’90s. The illusionary world of that iconic ZIP code could not have been any further from my own environment of blue-collar coal country, where I grew up in poverty. Forget Kelly and Brenda—I actually identified most with the character of Andrea, the smart girl from the wrong side of the tracks who attended West Beverly High by using her grandmother’s address to pretend to live within the elite school’s territorial boundaries. As a poor girl in Honors classes who had also used inaccurate addresses on school records throughout a good chunk of my childhood, I could really relate to Andrea, who—serving as the editor of the school newspaper—also shared my love of writing.

The season 1 cast of Beverly Hills 90210, which became a teenage soap opera sensation when it debuted in 1990.

It was perhaps because that fictional high school setting was so foreign and unimaginable to me that it was so fascinating, captivating my attention for the duration of every episode. I was also a faithful reader of teen magazines like Tiger Beat, where Perry seemed to have a permanent spot on the cover throughout the ’90s. I was too poor to buy those magazines so would read them cover-to-cover at the library.

Through the glossy pages of the entertainment magazines, I felt like I grew to know Perry as a person. I knew he had a jagged scar that cut through his right eyebrow, the remnant of a childhood injury. I followed the reports of inevitable chaos that would break out whenever he and his co-stars would be appearances at malls across the country.

Through it all—and in the years following—Perry was almost universally praised for his humble attitude, his appreciation of the show’s passionate fans, and his kind, compassion nature. That is part of why his sudden death seemed so shocking, but the other was his youth: surely, Luke Perry, the perennial teenager, was too young to have a stroke, let alone die from one.

Surely, Luke Perry, the perennial teenager, was too young to have a stroke, let alone die from one.

I myself heard heard the same refrain countless times when people heard what had happened to me: “You’re so young.” But as I know from personal experience, you’re never too young. When I had my stroke, I didn’t have a single risk factor: I didn’t have high blood pressure or high cholesterol, had no history of diabetes or heart disease, I didn’t drink and never smoked. But still, a stroke found me, just like it found Luke Perry.

The public belief that you can be “too young” for a stroke is a dangerous misconception that can have deadly consequences. When an older person suddenly exhibits classic stroke symptoms like face drooping, arm weakness, slurred speech, confusion, and difficulty walking, onlookers usually know that they should be brought to a hospital as soon as possible. Yet when someone “too young” to have a stroke starts exhibiting those same symptoms, people are more likely to jump to other conclusions (for example, that they are intoxicated or tired or simply feeling poorly) than that they need to call an ambulance.

That’s potentially fatal, because time is of the essence following a stroke. Treatments given within a three-hour window of the first onset of symptoms can greatly increase a patient’s odds of survival.

In my case, my most evident symptom was that I suddenly lost control and function of my right arm. I downplayed it at first, assuring myself that my arm had probably just fallen asleep, or that perhaps I had a pinched nerve. I wasted valuable time ignoring what should have been a clear signal that I needed urgent help. Who knows if I had gotten to the hospital earlier if the lingering side effects of my stroke could have been mitigated? Yet I count my blessing every day, because the outcome could have been so much worse: like Luke Perry, I could have easily died.

Everyone who knew Perry seems to have loved, respected, and admired him. They raved about how generous he was, and what a loyal, steadfast friend he could be. The world is undeniably poorer for his passing, but if there can be some silver lining to this tragedy, I hope it’s that this serves as a wake-up call to those who think a stroke is something that only happens to old people.

Because if Luke Perry, the forever teenager, can have a stroke—anyone can.

Neurological & Cognitive Disorders

An Extra Chromosome For Excellence

Carlos de Saro was born with Down Syndrome, but with the help of his mother's love, he has become an incredible role model.

Carlos de Saro doesn’t have a short list of accomplishments.

The 39-year-old, who has Down syndrome, received the Morelos state human rights award and Mexico’s Gaby Brimmer award for people with disabilities. He has given speeches in front of hundreds of people and made impressive appearances on Mexican television. And he is currently taking courses at a large public university.

But if his story sounds unique, for de Saro’s mom, it only goes to show what people with disabilities are capable of.

“There are so many people (with disabilities) who haven’t been able to get ahead, and who don’t believe in themselves and have parents who don’t believe in them either,” said Andrea Puebla. “They just think they can sweep and make a garden. But no, they can do more.”

About five years ago, Puebla and her son founded the non-profit Luchando Contra La Adversidad, or Fighting Against Adversity, which aims to help people with disabilities know their potential.

The organization, which is based in the central Mexican city of Cuernavaca, offers one-on-one classes every Tuesday through Friday and has helped about 50 students and their families with a variety of disabilities ranging from Down syndrome and blindness to autism and intellectual and motor deficiencies.

Carlos de Saro

Classes led by de Saro might focus on helping students learn their colors, draw within lines, or read, while talks given by his mother lean towards helping other parents understand their child’s needs.

Their initiative appears to have met a need: Classes have been so popular in their home state of Morelos, that the mother-son duo has turned away students.

“In Mexico we don’t have a book in children’s schools that says, ‘You have to help them, look at them normally, give them attention,'” says Puebla. “Some (parents) feel guilty because they say, ‘I let my son fall behind, I didn’t help him. I didn’t give him the attention I gave my other son and now I’m ready to help.'”

The classes aim to offer support and are free except for a 50 peso ($2.50) recommended donation.

In part, they are also a reflection of the duo’s own experience seeing that resources for people with disabilities can be scarce—and there isn’t always guidance in Mexico.

In fact, for most of her son’s life, Puebla says she wondered how to tell her son that he had a genetic disorder.

“If he understands it, how will he take it?” Puebla recalls thinking. “I didn’t know what he was going to think, what reaction he was going to have.”

So she waited to see what advice she would get and she focused on being a mom. She taught de Saro how to count and read and write. She made sure his homework was complete. And she showed him how to walk to his Montessori school alone, even while discreetly following behind him at a distance.

“I dedicated herself totally to him” so that “he would know what life is and what he could and couldn’t do,” she said.

A few years ago, the president of the Morelos state human rights commission met de Saro at an event for people with disabilities and was impressed by his good nature. The president invited him to work on various tasks such as archiving commission materials and accompanying staff as they did outreach for people with disabilities in poor, far-flung communities.

Carlos at work teaching a student.

And it was that work that gave de Saro and his mother an idea that they could do more to help.

The duo began giving lessons in a classroom at the commission, and de Saro eventually began receiving invitations to speak about his experience in Mexico, the U.S., Colombia and Panama, among other places.

His talks—which have emphasized that people with Down syndrome are human beings with “the same feelings, the same values and the same emotions” —can quickly bring a tear to his audiences’ eyes.

But at the heart of his message is a simple idea: As his own life shows, believing in someone with disabilities can go a long way.

“I’ve accomplished all of this with the support of my family, but more with the support of my mom,” he says.

For her part, Puebla continues to let her son walk ahead, but is still just a few steps behind.

When her son began giving conferences, for example, she recalls sitting at the front of the room and taking notes. Then, she would  say: “‘Look,my love, you repeated this, and these words weren’t used correctly. Or ‘remember that you should use a napkin to dry your mouth and sit up straight because your presence is important, or be careful what you eat so your suit fits you well.’

“In the beginning, I taught him all the motions, like how to check a bag, and so now he does it on his own. But I’m aware of what he’s doing and if there is something that he doesn’t do well, I tell him, ‘We’re going to do this and this,'” she says.

Just because you’re different doesn’t mean you can’t succeed.

“And like that— always playing, but saying things that are necessary: ‘Walk straight, order something reasonably priced when someone invites you to eat, say ‘thank you’ and ‘bon appetit,'” he learned.

After a 7.1-magnitude earthquake struck in Mexico last September, the organization’s classes were moved to their house, but in due time Puebla and her son hope to return to a classroom at the commission, where there is more space to host additional students.

Puebla also has other ideas in the works.

“I’m asking for an abandoned house to be donated so it can be used for people with disabilities, who are mistreated by their family,” she says. “No one pays me attention, but the day will come when someone is moved and will say, ‘You’re right, our children need attention.'”

As for her own son’s accomplishments, she says she is grateful.

“I gave thanks to God that he was born,” she said. “Now I give more thanks that he helped guide me so that he became what he is now.”

Neurological & Cognitive Disorders

From Rough Time To Ry’s Ruffery

A stroke showed Daniela Kelly that she could do anything, even run a business.

In a 2013 episode of Shark Tank, Daniela Kelly appeared with her 11-year-old son Ryan to try to get financing for their home-based business that made all-natural dog treats, Ry’s Ruffery. The business was actually Ryan’s idea, so he did most of the talking. He gave a poised, self-assured presentation and answered the sharks’ exacting questions with confidence. By the end of the segment, Ryan and Daniela walked away with a $25,000 investment from real estate mogul Barbara Corcoran.

Daniela would have liked to be almost anywhere other than under the hot glare of the studio lights. Before going in front of the cameras, in fact, she was ready to bolt the set—not from nerves, but because of the effects of a stroke that neither the show’s producers nor the viewing audience was aware of.

Daniela Kelly.

A lifelong Connecticut resident, the 47-year-old graduated from the University of Connecticut in 1992 with a degree in design and resource management. She worked for awhile at the Smithsonian, returned to her home state, married, and had three boys: Nicholas, 18; Ryan, now 16; and Eric, 14. Her roots to her family and community run deep. She embraced the life of a stay-at-home mom, living in the same house today that she grew up in.

There was a family history of high blood pressure and Daniela herself was taking medication for it, but she pursued a healthy lifestyle: never smoking, eating right and exercising regularly. She considered herself one of the least likely candidates for a stroke.

That illusion was shattered when she was 40. She had just finished a punishing workout with her trainer that included pushups with her head tipped down and her legs in TRX straps to make it more difficult. When she went to write a check at the register, she could not write the number out. “I thought that maybe I hurt my back. It didn’t make sense to me because there was no pain. There was just the absence of ability. It didn’t even enter my mind that maybe I’m having a stroke,” Daniela says.

She got in her car and started driving the short distance to her house, only to discover that she wasn’t able to turn the steering wheel with her right arm. She almost drove off the road.. She managed to get home and her father introduced her to someone she didn’t know; she couldn’t move her arm to shake his hand. It was only later that she realized she also had some facial drooping and trouble speaking.

After laying down for a few hours, she called the doctors.  “They told me either to get in the car with my father or they would send an ambulance for me,” Daniela says.

A New Perspective

At the ER, they had a lot of trouble getting a blood pressure reading because it was so high. Now she was in full panic mode. “They said to me that I was having a stroke. I was still looking for someone to tell me this was not true. I was still in denial,” Daniela says.

“There was just the absence of ability. It didn’t even enter my mind that maybe I’m having a stroke.”

By this time, her face was drooping, her entire right arm was dead, and she lost the ability to speak temporarily except for short sentences. She spent the next week in the hospital—and almost flew back there on her first night home because she was alarmed that there were no nurses around.

“To go home to three kids and two parents and a husband scared me to death because everyone relied on me to manage their lives and I couldn’t manage anything. And now I was relying on them, on my children. As a mom, it’s not a good place to be.”

Ryan Kelly, teenage founder of Ry’s Ruffery.

That loss of control meant not being able to make her kids breakfast or pack their lunches or drive them to school—a dramatic change for a woman who thrived on multitasking.

A network of devoted friends helped make the transition easier, delivering dinner to her doorstep every night for weeks on end so that she could have “an hour of normal and eat with my kids and forget about what I couldn’t do.”

Some permanent scars remain. She still suffers from aphasia–a common effect of strokes that makes it hard to understand or find the correct word to say–and has difficulty writing. Her ability to handle sensory input has been compromised, too. For example, the noise at her son’s hockey games can cause her brain to shut down and crave rest. Even sitting in a moving car while someone is speaking or leaves are falling outside can result in a sensory overload, forcing her to close her eyes and sit quietly to regain her perspective.

But in spite of her new limitations, Daniela says, “My stroke was one of the best things that ever happened to me. I learned how strong I am. I learned how capable my kids are. My kids are doing their laundry and my laundry. They’re helping with dishes. They’re becoming self-sufficient with their homework. They’re relying on each other. I learned how loved we are.”

More than that, it put things in a new perspective for Daniela and her family. Now, it didn’t matter if the vacuuming didn’t get done on a given day or a pile of books wasn’t picked up. It was more important to focus on the things that really mattered and to realize “there is nothing we can’t do.”


From Dogs To Sharks

It’s not surprising then that when Ryan got the idea of starting a business that made healthy treats for dogs, Daniela was his biggest supporter. In the beginning, they baked the treats together in the family kitchen and sold them locally. By luck, a woman in their neighborhood had a connection at Shark Tank and they were booked on the show.

It was a great opportunity that sent Daniela into a tailspin. On the day of the taping, the Kellys’ dog Barkley, a mostly beagle rescue dog, went flying through the set, and pandemonium erupted—something that Daniela’s injured brain could not handle.

My stroke was one of the best things that ever happened to me. I learned how strong I am. I learned how capable my kids are.”

“When they all started talking at once, the producers laughed at me because they thought I was going to run. I lost words on the set. I started crying because now there is chaos and the lack of quiet and concentration. I looked at Ryan and Ryan said to me: ‘Don’t worry, Mom, I know your lines. I’ve got this. Don’t say a thing.’ He had just turned 11 a couple of days before and he knocked it out of the park,” Daniela says.

Barbara Corcoran, head of her own multi-billion dollar real estate empire, invested $25,000 for a 25% stake in the company. Ry’s Ruffery, as the business is now known, has grown and expanded under  Corcoran’s tutelage. The treats are sold online and have also been carried in stores such as Kroger and Wegmans. The baking is now done in Missouri. Daniela manages operations by computer in her home office–her first job since the stroke–and reports to her new boss, Ryan.

The solitude is a welcome respite from the chaos of everyday activities and lets her focus on the positive.  “A health issue can be the biggest blessing in your life if you choose it to be. I don’t mean to make light of people’s health problems or discount the struggle of anybody, but there are so many people out there to lighten the load if you just let them. It’s the best thing ever.”

Neurological & Cognitive Disorders

The Memory Queen

When Alzheimer's took my grandfather's memory, I started writing a fairy tale to make sense of our loss. But dementia cannot be defeated like a fairy tale queen.

Down the street from my grandparents’ condo in Hawaii, there used to be a nightclub with a cardboard-looking mural in front of it, depicting a woman snorkeling.

My family and I used to joke that the woman was my grandma. There was something about their similar stern, narrowed eyes, head of dark hair, and flawless light skin, despite the Oahu heat, that made the snorkeler’s face familiar. I had never seen my grandma swimming, and I had never so much as seen my grandpa in a pair of swimming trunks. But that mural was still a significant landmark, probably because trips to my grandparents’ place at that very young age usually meant that we would take a swim in their pool.

If we went to visit on a Sunday, we would shower upstairs in my grandparents’ apartment before going to our almost weekly family dinners at the restaurant of my grandparents’ choosing. Half-naked and ducking my mother’s attempts to approach me with a hairdryer, I would admire family pictures around the condo: official cruise photos in their glossy paper frames, posed family portraits, and school pictures of my sisters and me. There were almost always snacks around, which my grandparents offered constantly, despite our pending dinner, and my grandpa would often encourage me to change the television channel in the living room to something I would rather watch, even when a football game was on.

[My grandfather] loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

Then we would drive over to a Chinese restaurant or Japanese diner or the occasional steakhouse. With my grandparents forming the center of gravity, we would all pack into a large booth together, leaning in as they told us stories about their travels. They had a whole routine down with my grandma often enthusiastically beginning a story and my grandpa nodding in agreement beside her: a transatlantic cruise, a tour of Europe, a visit to Japan to see the cherry blossoms. One anecdote, in particular, shattered my preteen heart into a million pieces: one time, on a return flight to Hawaii, they were bumped to first-class, and found themselves sitting next to Justin Timberlake, Lance Bass, and the other members of NYSNC. As they regaled us with stories, waiters would stop by, asking for gambling tips my grandparents had picked up on their latest trip to Vegas.

Together, the two were the life of the party: my grandmother, always joking, commanding the room, a masterful raconteur; and my grandpa, her perfect complement, beaming by her side, giggling after her every punchline as though it was the first time he had ever heard it. My grandpa especially seemed to love these dinners, joyfully taking in the company of our family. He loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

When I finished sixth grade, my family moved from Hawaii to the suburbs of Georgia, but Oahu was always my home. In the summer months, we would return to the house where I grew up, complete with its shag carpet and ’50s flair, and resume our Hawaii lives: taking summer classes, hanging out at the mall with friends, and–most importantly of all–resuming family dinners.

Even when I left for college, I would still come back to visit whenever I could, staying with my grandparents in their condo. During the days, I would shadow my grandparents as they went about their days: watching The Price is Right with my grandfather, or watching my grandma make travel arrangements on her iPad.

In hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

I was in my early 20s, and my grandparents usually let me do my own thing. One night, sneaking back into the house 2am after an evening out clubbing with my friends, I heard a rustling behind me as I took my heels off in the dark. It was my grandpa. Illuminated solely by the light leaking down the hall, he had appeared out of nowhere. My heart jumped guiltily in my chest as we studied one another. Then, I saw the bowl of Frosted Flakes in his hand.

“Want some?” he asked.

My grandparents are cool as shit, I thought to myself at the time. But in hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

We’d find him pacing around the apartment, moving things from one room to the next. Or we’d find him standing at the kitchen sink, washing a single spoon over and over again, which may not have even been dirty when he picked it up.

When I came to visit, Grandpa would hug me, but I could tell he didn’t know my name, or even what our relationship was.

For the most part, he was agreeable. He could pass as normal in large social situations, laughing when everyone else did, and fawning over my grandma. But if you watched him, you could see the subtle clues. He wouldn’t eat so much as push food around his plate, or offer it to others, claiming he was full despite having never taken a bite.

An old family friend said that my grandpa’s agreeable nature in the face of Alzheimer’s was a testament to what a good person he was before he was diagnosed. I appreciate the sentiment, but it always filled me with more questions. Who was he now? And what did that mean about the time we spent together? Did it mean anything at all?

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

One summer night, my grandma gathered the relatives for dinner at a hotpot restaurant while I was in town. It felt just like it did when I was a kid. Everyone was talking loudly, telling stories about their travels. People asked me how New York was, where I’d been living for a few years, while we all cooked raw vegetables and meat slice in boiling pots of broth.

That was when my grandpa, who had been to this place before, picked up an uncooked noodle, took a bite of it, and frowned. “I don’t think I like the food here,” he said. I smiled reassuringly and showed him how to cook his noodle in the broth; no one else had noticed.

Afterwards, I couldn’t help but keep a close eye on him. I noticed my grandpa was looking through the faces of the people at the table, out of our private room. I tried to follow his gaze, but I couldn’t; I simply couldn’t understand what he was looking at.

Being so physically close to him but unable to connect was heartbreaking. I wondered if my grandpa felt that same sadness. Maybe in some ways, this is harder for us than it is for him, I thought to myself. If he can’t even remember, maybe he doesn’t understand what he’s lost.

When I got back to New York, I started writing to sort out my feelings.

The piece that started to take shape was a play. Not specifically about my grandpa, but a grandpa who suffered memory loss. It wasn’t Alzheimer’s, though. His memories were being stolen from him. There was an evil queen named Dementia, siphoning memories from David, the grandpa in the play who shared the same name as my own. And there was Mia, an estranged seven-year-old granddaughter, hell-bent on protecting David by collecting items of power from around her grandparents’ house to finally defeat the queen.

She wondered what it was like to lose all of your memories. She wanted to know how painful it would be

Mia asked all the questions I wanted to ask. She wondered what it was like to lose all of your memories. She wanted to know how painful it would be. Most of all, she wanted to know how to connect with someone she loved when he may not even know who she was.

As my trips to Hawaii became less frequent, my time there became more precious. I started spending less time with friends, and instead focused on my grandparents.

Suddenly, little moments felt very important. One afternoon, my grandma took us out for shave ice. My grandpa had a big sweet tooth, and we took our plastic cups back to the van and ate them in the car. We rolled down the windows, and my grandpa reclined his seat. I sat there, feeling the warm breeze on my face, as my grandpa finished his frosted rainbow cup, then closed his eyes for a short nap. Everyone was happy, and silent, and I couldn’t help but smile between bites.

But as much as I enjoyed these moments, I also felt an obligation to memorialize them. I tried to memorize every line of that moment–the incline of my grandpa’s seat, the expression on my grandma’s face, the exact patterns in each cup’s rainbow ice–so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s. There was an added layer of consciousness in our time, an awareness that every memory must be stockpiled for a time when I would need them for comfort.

I tried to memorize every line of that moment… so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s.

One day, my grandpa asked me if we could go for a swim together in the pool downstairs. In all our time together, he had never once shown any interest in swimming, but this time, he changed into his trunks and followed me out the door. I felt so goddamn grateful as I watched him float and bob around the water. At this point in his battle against Alzheimer’s, he sometimes wouldn’t even know who I was, yet here we were, sharing a rare moment together.

My next visit, my grandpa overheard my grandma mention I was on my way down to the pool. He perked up.

“We’ll go for a swim?” he asked, making little freestyle motions with his hands.

“Let her go, David,” my grandma said, mentioning it was time for a nap.

I went downstairs by myself, assuming he would sleep and forget the whole exchange. When I returned upstairs, however, he smiled at me.

“Swim?” he asked.

I wanted to throw up. Of all the things he remembered of our time together, that swim we had taken was one of them, and I had just shrugged off an opportunity to create another special moment we could have shared. I’d never get that opportunity back; we never ended up going swimming together again.

My play had a professional reading at the New Ohio Theatre in New York in 2013.

It was produced and directed by a coworker at the bookstore where I worked, and he assembled a top-notch cast for the occasion. I had a whole slew of professional actors at my disposal, one of which was on Broadway in Newsies, but one of my favorite people involved was the child actress playing Mia, who seemed fearless. My mom flew in for the big reading. She had never seen any of my plays, so it was a special occasion. I also had about 30 friends and colleagues in the audience, hearing my most personal work read out loud.

When the show was over, I received a lot of congratulations from the cast, crew, and audience. My mom really enjoyed seeing the process of a performance getting up on its feet. Some of my friends admitted to tearing up during the show.

But in the days that followed, I found myself getting a lot of feedback from colleagues. One note, in particular, came up consistently: Is this a kid’s show, or an adult’s show?

Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

I was surprised. Despite the fairy tale plot, I’d never seen the play as being for kids. I saw Mia’s journey as an idealistic take on a disease that makes idealism impossible. It represented my hope that things maybe could get better, that there is something–anything–productive to do in the face of Alzheimer’s senseless loss.

The climax of the play occurs when Mia has collected all the items needed to defeat Queen Dementia. By recalling her favorite memories of her grandfather with these totems in hand, she is able to vanquish the Queen, and reclaim the key to the box where Dementia has hidden all of David’s memories. It rests on the family mantle, but when Mia reaches for it, David enters the room, startling it out of her hands to break open on the floor.

For a fleeting moment after the box breaks, David looks at Mia. There’s a flicker of recognition. But then Mia’s mom and Grandma come running into the room. The recognition is gone. Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

Reality came crashing down with the locked box. All Mia’s hard work had culminated in a moment of clarity, but it had opened like a wound–pulsing and bright–and then healed over in the blink of an eye.

The news of my grandpa’s passing came quickly.

My grandparents were supposed to meet my parents in Vegas, but right before the trip, my grandpa was suddenly admitted into a hospice, By that weekend, he was gone. Spending the weekend with my boyfriend’s family for a barbecue, I remember crying outside a New Jersey Chili’s upon hearing the news. At the barbecue itself, I separated myself from the crowds, walked down the street to the boardwalk by the house, and wailed out my grief into the reeds lining the water, hugging myself as I did to keep myself together.

I had no illusions about how my grandpa’s life would end. I had been preparing myself for years for that call, stocking up my vault of memories. But as I gasped for air in the night, I realized that there had been part of me still believed the fairytale: that it was possible to vanquish Queen Dementia, and that I would be able to see Grandpa one more time, as he had been, if just for a minute.

I flew out for the funeral. With my work schedule and flights, I ended up in Hawaii for about 36 hours.

My mom and sisters and I stayed at an AirBnB within a few minutes of my grandparent’s condo which was so cramped, I had trouble sleeping. In the dark, I thought about that nightclub mural of my ‘Grandma’ snorkeling, and how the last time I saw it, they’d physically torn her out of it; only the ocean and fishes remained around the snorkeler-shaped gap. She was gone, but the absence of her was palpable. My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss. And I was the sea, feeling the gaps left by the things time had stolen from me.

At the funeral, I was given the task of handing out programs. On the outside was a photo of him smiling next to a giant spiral-cut, fried potato. It was a perfect choice–an image of the joy my grandpa got from the simplest things.

My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss.

The funeral itself was short but sweet. They played Taps on a bugle along with a military flag presentation, which I knew my grandpa would have loved. It reminded me of how, when my grandparents visited me in New York, he would grunt in appreciation during the pauses between lyrics in Broadway shows.

After the funeral, we all went to a Chinese restaurant for dim sum. There were faces there I hadn’t seen since my childhood.

When we walked in, my grandma was giving the waiters instructions, rearranging tables to make sure everyone was accommodated. Amidst the pinging of teacups, clinking of silverware, and whirring of Lazy Susans, people shared stories about my grandpa, and talked about things about him they’d miss.

But even there, life was moving on. At one point, during a talk about the latest movie releases, my Grandma perked up. “What’s Sausage Party?” she asked.

The table erupted in laughter.

I suddenly felt very thankful. We all missed my grandpa, and that loss will never go away. But the family will live on. Here, with all these people who loved and remembered him, something opened up, bright and pulsing. For a moment, even without him there, I was home again.

Creative Commons photo from Debs on Flickr.

Neurological & Cognitive Disorders

Rosa Parks and the Hard Cost of Activism

Civil rights activist Rosa Parks' seemingly simple decision to keep her seat on the bus took on a life of its own. But it also largely overtook her life... and her health.

Happy Martin Luther King Jr. Day! As we pause to acknowledge the great men and women who have pursued civil rights reform in this country, let us not also forget that they often did so while simultaneously managing health conditions. This story from our archives, originally published on July 13, 2017, shows how chronic illness and civil rights intersected in the life of one of Reverend King’s personal heroes, Rosa Parks.

When she refused to give up her seat on a segregated bus in Montgomery, Alabama on December 1st, 1955, Rosa Parks became a civil rights icon. But it wasn’t without cost. The personal aftermath of Parks’ courageous one-woman sit-in was a bumpy ride, though, a road marked by potholes related to the young leader’s physical and financial health.

Parks’ refusal to give up her seat kicked off the yearlong Montgomery Bus Boycott, one of the first major milestones of the Civil Rights Movement. Other activists had refused to give into the racist seating system before Parks, then the secretary of the Montgomery chapter of the National Association for the Advancement of Colored People (NAACP). But it was the mild-mannered department store clerk whose case ultimately led to the desegregation of the Alabama city’s public transit system. Parks later stated that to stay focused on her purpose, she often thought of Emmett Till, the African American teenager from Mississippi who had been lynched only months prior for whistling at a white woman.

This  undated photo shows Rosa Parks riding on the Montgomery Area Transit System bus. Parks refused to give up her seat on a Montgomery bus on Dec. 1, 1955, and ignited the boycott that led to a federal court ruling against segregation in public transportation.

Activism is rarely simple or straightforward. For Parks, though she was a longtime activist, her pivotal place in history was somewhat accidental. She has said repeatedly that she did not mean to get arrested that particular day, only that she was worn down by one too many indignities of existing in public space and simply didn’t immediately move to her assigned place.

Several days after she was arrested for refusing to give up her seat, Parks went to trial. That day, the Women’s Political Council–a local activist organization–distributed 35,000 leaflets encouraging other African Americans to stay off public transit. Activists coordinated carpool systems; an alternative public transportation system–one that was by and for African Americans–sprang up overnight.

Naturally, Parks volunteered as a dispatcher, urging riders and drivers:“Remember how long some of us had to wait when the buses passed us without stopping in the morning and evening.” Soon, tens of thousands of Montgomery residents–not just African Americans–took to walking everywhere as a show of support.

Parks’ seemingly simple decision to keep her seat on the bus had taken on a life of its own. But it also largely overtook her life… and her health.

In her award-winning book, The Rebellious Life of Mrs. Rosa Parks, historian Jeanne Theoharis writes that during the bus boycotts, Parks developed ulcers. Her physician put her on a milk diet, which was very expensive; later that year, she underwent some gynecological-related surgery, adding to her mounting medical bills. Her health issues were exacerbated by burning the candle at both ends: letters that Parks wrote home detailed how much she enjoyed traveling to give speeches and radio interviews, even as it wore her out.

Rosa Parks waits to board a bus at the end of her boycott. Photo: Don Cravens

Eight months after the  bus boycotts ended, Parks, her husband, Raymond, and her mother, Leona, remained unable to find work. Harassed constantly by hate calls, the family chose to move north to Detroit, but soon, Rosa left her family and temporarily  moved to Virginia to take a job she’d been offered as a hostess at an inn at a historically black college. Parks wrote to her mother that she felt she needed to stay in Virginia to make money “but I can never tell when I will get sick or be upset about something.”

At the end of 1959, a brutal year for the family, ulcers put Parks in the hospital. The hospital bill was over $500, the same year that the family’s income tax returns show a total annual income of $661. Like today, where crowdfunding sites like Indiegogo are all too often expected to pick up the slack of a broken insurance system, Parks’ friends and family came together to raise money on the family’s behalf. Even so, the financial burden of Parks’ illnesses remained heavy.

Finally, Parks–long nearly unemployable due to her notoriety–was able to find a well-paying job. In 1965, after volunteering for his campaign, Parks secured a position with newly elected Michigan congressman John Conyers, a job that paid several thousand dollars and provided health insurance. Parks stayed on as an assistant to congressman Conyers, who is currently the longest-serving member of the U.S. House of Representatives, until her retirement more than 20 years later.

Even with stable work, she continued to struggle. In the late 1970s, Parks experienced more setbacks when she fell on an icy sidewalk and broke two bones that subsequently caused her serious chronic pain. Her husband, Raymond, died in 1977, and Parks cared for her aging mother, Leona, who eventually succumbed to cancer and geriatric dementia in 1979.

President Obama pays tribute to Parks.

Despite needing the income for medical bills and basic needs, Parks continued to donate the money she earned from speaking fees. A longtime supporter of political prisoners and an anti-apartheid activist, she helped greet South African president Nelson Mandela upon his release from prison in 1990. Her activism continued unabated, with awards and honors too numerous to name, even as she eventually succumbed to dementia. Scholarships in her name for Detroit-area youth have totaled over a million dollars, and her name has been placed on too many roadways, public buildings and public transit-related structures to count.

Rosa Parks was 92 when she passed away in October, 2005. More than a decade later, her legacy of standing for desegregation and prisoner rights continues to loom large in an era when Black Lives Matter activists put their bodies on the line, staging die-ins and filling city streets during marches to protest police shootings of young, often unarmed black men and women like Trayvon Martin, Michael Brown, and Eric Garner. Fighting for basic human rights has never been a simple or straightforward endeavor, and Parks’ legacy is enduring proof that struggles for equality are not uncomplicated acts without great if necessary personal sacrifice. Parks often worked harder than her body seemed to want to allow, but as she once told a fellow activist, “Freedom fighters never retire.”

Neurological & Cognitive Disorders

No Silver Lining

My husband's slow descent into delirium had no upside, but it failed to diminish my love for him, or the effect he'd had on my life.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.

I’ve never believed that every cloud has a silver lining or as the German philosopher Nietzsche said, “That which does not kill us, makes us stronger.”

My husband’s debilitating dementia had no silver lining, and it made neither of us stronger. John’s decline was marked by suicide threats, crying jags, and psychotic episodes that landed him in the geriatric-psych unit for weeks. Once he even managed to hurl himself out of a reclining wheelchair.  He knew he was losing his mind, and he objected.

By the time we first started dating thirty-six years before, I’d had my share of relationship failures, including the breakup of my first marriage, which I felt so guilty about that I split myself into two people: the one who wanted to stay, and the one who wanted to leave. The two argued incessantly, and I was always trying to make a quick getaway in the hope that I could escape one of them and find some peace of mind. The one who wanted to leave turned out to be my better half, and ultimately we both left my husband.

John and Pamela, shortly after they met.

In contrast, John, an NYU professor seventeen years my senior, evoked the image of a steady ship in calm waters with his tall person, confident stride, and ever-present briefcase.

After we’d been dating for a few months, John left for a fly-fishing trip out west. I missed him terribly.  Then late one night, the telephone rang in my apartment. It was John, calling from Last Chance, Idaho.

“I’ve been thinking about you,” he said. “I’d like to spend more time with you.  In fact”—there was a pause on the other end of the line—“I’d like to spend the rest of my life with you.”

I was speechless, terrified that this was too good to be true.  I panicked that I would ruin our relationship by panicking, and he would get sick of my panic and leave me.  This created more panic.

All the same, that August we got married and moved into a 5th floor Chelsea walk-up.  The panic moved in with me.

One day, shortly after we got married, John found me sitting on the apartment stairs crying. He was stumped. What the heck was I doing sitting there crying about nothing?

Eventually it occurred to me that John wasn’t going to get scared off by my panic attacks.  He loved me whether I panicked or not.

“You’re playing to an empty house,” I told myself. “Why don’t you just relax and enjoy the relationship?”

“Why don’t you just relax and enjoy the relationship?” That was some of the best advice I ever got.

That was some of the best advice I ever got.

From the beginning, John expressed unshakable confidence in my dream of becoming a writer.  Not only did he think I would be a writer, he believed I already was one, even before I demonstrated the talent or tenacity.  That someone believed I could actually accomplish anything was a novelty for a girl who had grown up with a conspicuous lack of abilities or even intelligence, at least that anyone took note of.

I spent most of my time as a child obsessing about the unsettling fact that I had been born, which meant that one day I would die.  When my parents took me to see a movie about the Titanic, I became alarmed by how swiftly and haphazardly death could come.  One minute you’re singing and dancing, and the next you’re drowning in the North Atlantic.

Kindergarten came as a rude interruption to my existential preoccupations, and I almost flunked out.  My mom said I was dumb, like her which was sad because she was more confused than dumb.  My teachers said I needed to adjust, which never happened, and my first husband, whom I married at nineteen, said I was an idiot to think I could ever be a writer.

A picture of John and Pamela, after John won the NYU Distinguished Teacher’s Award.

With all my worries about getting shipwrecked in the icy Atlantic, bad grades, and a husband who assaulted my intellect on a daily basis, life was a challenge.

Until John.  John not only believed in my dream of becoming a writer, he believed in me as a person, in my innate goodness.  If faith is the evidence of things not seen, then he had more than confidence in me – he had faith. And because of his faith, I became the person he believed me to be (almost) and the writer he believed I would become.

Then John had a stroke. Now, I had something concrete to panic about.

My efforts to keep John alive and safe felt like trying to outrun a truck that was careening downhill. The stroke was followed by multiple falls, fractures, seizures, and surgeries. Eventually he could no longer walk.  The cost of hiring round-the-clock nurses ($18,000 a month) was out of reach, so I placed John in a memory care facility close by, and visited him every day.  I brushed his teeth, played Bach and Jessye Norman, exercised his legs, and reminisced about the past.  When our daughter, Annelise, talked to him about college, his face lit up, if only fleetingly.  But our separation made me feel like I was leaving this man who had always stood by me, or that we were leaving – or losing ­–each other.

“I couldn’t find you,” he’d cry, when I visited him. “I didn’t know where you were.  I didn’t know who I was.”

Now he was the one panicking.

For John, I existed in a dream: an apparition of memory, love, and self, miraculously appearing out of nowhere, then vanishing just as mysteriously.

Sometimes I’d hold his hand. “You’re magnificent,” I’d say.  And then he’d have more than himself for just that moment; he’d have us.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp. He was a brilliant man, and some of the pieces glittered.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp.

Late one night the telephone startled me awake.  It was a nurse on John’s floor.

“John’s screaming and we can’t calm him down,” she said.  “Will you try talking to him?”

A few minutes later the nurse handed John the phone.

“I’m not even French and they’re trying to kill me!” he yelled.

Oh my God, I thought, he’s in the French Revolution, which wasn’t surprising since he taught 18th Century literature and history.

I did not succeed in calming him down that night, or bringing him into any other era, including the present.

Ultimately, everything faded from his mind: his passion for teaching, his joy in his students’ success, people and places from the past.  But when all that had vanished, he still knew me and our daughter.  The details of our lives – where we lived and what filled our days – eluded him, but he knew who we were and what we were to him.

Still I was not prepared to call that a silver lining. A titanium lining, at best. Titanium, I knew, blended strength and practicality with a high melting point: just like me, since I’ve been known to blow a fuse now and then.

“Are we married?” I asked him one day, after yet another stint in a geriatric-psych hospital.  It had been two years since he’d moved to the memory facility, and he was fading fast.

John gazed at me fiercely, in spite of the haze of dementia and truckloads of tranquilizers and anti-psychotics he was on.

“Absolutely,” he said.

Three days later, he was dead.

His death brought new questions and dilemmas.  How could such a tremendous (though diminished) personality simply vanish?  Could he still see me somehow? Would we meet again, on a trout stream one summer evening: he casting a fly, me reading on a grassy bank nearby?

Our daughter Annelise rests her head on John’s lap, shortly before he died.

A friend told me her late husband returned as a thrush one spring morning, and trilled a song to her from the treetops.  Was the bird singing outside my window, John?
At John’s burial, our friend Gary, who knew John years before I had, said a few words.

“When I met John he was a kind and serious man, but emotionally heavy,” he began.

Old friends who had gathered around the gravesite nodded knowingly.

“In the periodic table there are transitional metals like silver, gold, ribidium–heavy metals,” Gary went on.  “When John met Pammy, his soul lightened.  Nitrogen, hydrogen, helium – these are the elements he inherited when he fell in love.”

The word “helium” brought laughter and recognition. But no Nietzschean strength. I wondered when I would recover.

Yet, with time, John’s confidence in me, his very essence, has became a part of me, of who I am and how I make my way through the world.  Gradually I have grown more serious, more solid.

I still panic about nothing, but every once in a while I catch a glint of those transitional metals Gary spoke of at the gravesite that day: gold, rubidium, and, yes, silver.

Neurological & Cognitive Disorders

This Retired Pharma Exec Is Trying To Cure Alzheimer’s In The Black Community

After his mother got Alzheimer's, Willie Deese used his money and connections to confront diversity issues within the pharmaceutical industry head on.

A study of more than 270,000 individuals, published last year, suggested that 38 percent of blacks aged 65 are projected to develop Alzheimer’s. And as the overall U.S. population grows older, this neurological illness mainly affecting aging people is expected to become a bigger, more costly problem for the medical community, patients and their families. It hits blacks harder than any race of people: African-Americans are twice as likely as whites to develop Alzheimer’s.

Willie Deese.

Willie Deese, a retired executive vice president for prescription drug-maker Merck, knows how hard Alzheimer’s can hit black families. His 88-year-old mother has the incurable brain disease. That’s why a good chunk of the $1 million that  Deese donated in 2016 to his historically black alma mater, North Carolina A&T State University, went to its groundbreaking center for researching Alzheimer’s in African Americans. He’s hoping that his money and industry connections can help finally find a cure for dementia, as well as explore the role that race can have in getting patients proper treatment.

These days, from the Chapel Hill home he shares with his wife, the native North Carolinian spends his retirement serving on corporate boards and advising African Americans who are interested in pharmaceutical industry careers. And he stays busy talking about the issues surrounding clinical trials and who enrolls in them.  He continues to push drug makers and everyday people, alike, to do their part to ensure that prescription drugs and other medical interventions generally are tested on both genders and every race.

Folks sat down with Deese to talk about his mother, his career, and the ways that pharmaceutical companies can be more inclusive.

When did you first suspect that your mother was ill?

About seven years ago, I noticed that she was repeating herself and forgetting things, like how to get to the room where she was staying while visiting us. I said to my wife, “Something is just not right.”

Since then, my mother’s Alzheimer’s has progressed. For almost everyone who has this disease, it progresses.

Today, she lives in a facility that takes very good care of Alzheimer’s patients. If she had her druthers, she would be in her home. But she can’t live there safely without round-the-clock care.

Since your mother has gotten sicker, how has your mom-son relationship changed?

My mom and dad both had close relationships with all nine of us children. We grew up on a farm with a lot of love, a lot of laughter, a lot of caring … in very ordinary ways.

When I was working for Merck, I’d talk to my mother two or three times a week. If she needed something done, input or advice, as she aged, she tended to count on me and my older sister–the oldest of us and the one who has assumed responsibility for most of my mother’s care–as the people she called first. It was just kind of understood that, if she needed something, she could count on me.

How do you deal with your mother’s declining health? How does it make you feel?


It’s tough to watch. I’m 62. When you’ve known your mom all of your life and remember her at her best, all of this is difficult. She used to have a very, very sharp and engaged mind.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s. In some way, shape or form, it catches everyone. And it is not a positive experience. So, the family also goes through these tough stages. Denial, resentment, anger.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s.

For me, the harshest moments are watching my mother mistreat my sister, who has a master’s degree in social work and is the person who has been closest to my mother and provided the most support. My mother can use some harsh language, at times. She can be totally disrespectful in her interactions with my sister. My sister personalizes some of that. It hurts. But my sister knows these are not things that my mother can control. She says, “This is my mother. I have to take care of her.”

I’ve received significantly less of that acute misbehavior from my mother. But I do understand and feel the hurt. Despite those behaviors, which many Alzheimer’s patients exhibit, you have to continue to love them and care for them and give them more time and attention.

How do you account for the difference in how your mother now treats you and how she treats your sister?

Mrs. Deese, Willie’s mother, who has Alzheimer’s.

From a clinical perspective, I cannot tell you why that is. I can tell you–from what I know about this disease–that the differences here are normal. They may grow out of the fact that patients spend more time with primary caregivers than others. I have no more insight than that.

How does Alzheimer’s affect your mother at this point?

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self. She is having a conversation, remembering what she said five minutes ago. She can string thoughts together. And all of this gives you the momentary, false feeling that she is going to come out of this. That’s not going to happen.

The repeating, forgetting, confusing things, all of that comes back. With each passing day, those things worsen.

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self.

What was your mother’s  initial response to being diagnosed with Alzheimer’s?

Largely, denial. Most people with Alzheimer’s will go through a long period of denial and almost anger.

My mother had always been very mentally sharp and keenly aware of her surroundings. Even now, she knows that something’s not right with her mind. And that awareness—that things have changed, that things are different from what they used to be—also is a symptom of the disease.

She’s lucky to be in a specialized facility, yes?

That’s right. A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines. Particularly in the African American community … many people with the disease often are alone, fending for themselves and trying to take care of themselves as they deteriorate. They forget to eat, how to comb their hair and brush their teeth. They become a significant health hazard to themselves. Imagine leaving the oven or a stove burner on, or confusing where something goes in the house.

A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines.

Your family’s resources and resolve have meant much in your mother’s care? What about those who are less well-off?

It’s not easy to house and care for Alzheimer’s patients, especially as they get older and require round-the-clock care. I would guess that it costs anywhere from $30,000 to $100,000 annually to provide that level of care. It is inherently expensive. And government assistance for Alzheimer’s care is extremely limited.

Why do you suggest that more African Americans than people of other races are battling this disease alone?

This is not an empirical fact, but my guess is that we tend to be underdiagnosed. In some cases, it’s not even recognized that a person has Alzheimer’s. That’s partly because African Americans, I think, have a harder time talking about illness that affects our mental state, the brain.

How did you get into the pharmaceutical business?

After 16 years in the computer industry, I was recruited into the pharmaceutical industry, not knowing a lot about it. They liked that I had experience in procurement and operations management. Once inside the industry, you learn a lot about drug research, about the way the industry conducts clinical trials … and about who gets into trials and who doesn’t. Your learn about which communities are willing to be a part of trials and which are not, and why some African Americans might shy away. They’ve been less likely to participate because they are aware of such things as the Tuskegee experiment [ed. – in which federal researchers investigated but deliberately did not treat syphilis in black Alabama men. However, fewer African Americans now see that historic tragedy as a reason to avoid enrolling in medical trials, according to more recent research].

You’ve also been pretty vocal about the need for more people of color in clinical drug trials and other medical trials and research. Why?

Years ago, the industry did not actively seek to include people of color in clinical trials. It’s doing a better job today, though there still is plenty of room for improvement.

Equally concerning is whether there is enough willingness among people of color to participate in these trials. We have to find a way to encourage the enrollment of people who are African American and other ethnicities in these trials. As we learn more about the human genome and biomarkers, it is becoming increasingly clear that medicines can be designed and personalized based on your genetic make-up. If African Americans and other races are not in those trials, we are missing an important part of the data that determines the efficacy of drugs.

We have to find a way to encourage the enrollment of people who are African American and other ethnicities in [clinical] trials.

It’s a two-way street. We have to drive that point home. Diversifying the races of people participating in medical research will take some time—but it cannot take forever. Disease does not take a day off.

What are some ways of creating a better mix of the people enrolled in clinical trials?

You do it through education and public awareness. I believe that people will enroll in clinical trials when they learn about why it’s important to participate from people they know and trust. Pharmaceutical companies need to reach out to those communities, and touch people who have influence. And our [historically black] medical schools, the Howards, the Meharrys have a role to play in helping to educate.

Our community has not been educated as well as it should be about the relative risks and benefits of trials; that’s true of Alzheimer’s trials and trials of [interventions] for other illnesses. It’s a question of both whether you know the people who are talking about this and whether you trust what they are saying. Maybe there is a specific aspect of the care or research that you may not trust. Having someone you know and trust talk about that gives you a greater sense of trust and of safety.

Were those hopes—and your mother’s battle with Alzheimer’s—the main reasons you are helping to fund North Carolina A&T’s Center for Outreach in Alzheimer’s, Aging and Community Health? It’s studying the genetics of Alzheimer’s but also providing training and other support to caregivers.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal. There is some scientific belief that heredity may play a role in the disease.

That’s one more example of why we, people of color, have to be willing to invest our resources and participate in clinical trials. That has to happen if we are ever going to have a chance … against this disease, which, like mental illness, can carry such stigma in the African American community. There’s no need for the stigma.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal.

If we choose not to talk about this, if we choose not to acknowledge the negative impact of Alzheimer’s, then 10 years from now, 15 years from now …  it has the potential to be catastrophic in our community and a huge financial drain on the country.

Do you find it interesting that your career would provide you with such insight on your mother’s illness but, also, what medicine, in general, may mean for different communities?

I didn’t expect this could happen to my mother. It was just not on my radar. But when things happen, if you have an ability, knowledge or resources, then, you are called upon to use what you have to do what you can to help. That governs the way I live my life.

If my mother had to get this disease for me to have a keen interest and to want to see it eradicated, then, I am OK with that.

Neurological & Cognitive Disorders

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.

Neurological & Cognitive Disorders

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.”