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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.

Advice

How To Job Hunt When You’re Disabled

Finding a job when you're chronically ill can be a challenge. So we spoke to an expert who has placed hundreds of disabled jobseekers for tips.

When my chronic illness started in the the winter of 2012, I tried to shrug off my symptoms. Desperate to keep my job at a small public relations firm, I ignored my growing fatigue and unexplained nausea and forced myself out of bed every morning… until I collapsed. I was hospitalized, and I eventually learned my illness was never going to go away – but it would take several more weeks before I would accept I couldn’t work like I had before. My illness required creative thinking.

I’ve had difficulty working full-time since. Nor am I alone: in the United States, only 22% of people with disabilities are employed, while only 4% of them were not in the market for work. Given that a billion people are disabled worldwide, that’s a huge pool of talent being ignored by employers, who can be reticent to hire people with unpredictable chronic illnesses, or limited capacities in other ways.

So what can a chronically ill or disabled jobseeker do to increase their chances of being employed?

Workbridge, a national recruitment agency based in New Zealand, works with both employers and jobseekers to help people with physical or mental health conditions find the right fit. They fill more than 3,500 positions a year, and are “inundated with employers” looking to advertise and work with them, according to Employment Consultant Nicola Zielinski.

Zielinski, who’s been working in this sector for fifteen years both in New Zealand and the United Kingdom, says that Workbridge places 90% of the people they work with. But when you’re chronically ill or disabled,

“It’s very rare that there’s not a job out there for someone,” says Zielinski, who says Workbridge places 90% of the people who come to them.  “I get asked what sort of sectors we work in, and I say: anything. People with disabilities can do all types of jobs.” You just need to maximize your chances.

Be Patient, And Think Outside The Box

Finding the right job can take time. Zielinski encourages jobseekers to find a way to connect with others first, like volunteering.

“It’s easy to look at it and see the end goal of paid employment, far away,” But you can break it down into steps. Volunteering or very part-time work can test your skills, give you new ones, and give a sense of routine and purpose that many people need.”

Paul Hoverd, a 50-year-old stroke sufferer, is a perfect example. Paul had extensive experience in many fields, including as police officer and a teacher. Feeling unable to do that sort of role following his stroke, he went through six months of job rejections. What finally got his foot in the door was when Workbridge discovered Paul’s love of animals and photography, and suggested a first step: volunteering with the local SPCA (Society for the Prevention of Cruelty to Animals).

“Opportunity could look different to what you thought.”

The unpaid gig gave Paul the opportunity to rebuild confidence, get back into his routine post-stroke, and practice his pup photography. Soon, he was working at a canine kennel, and is now trying to take his work to a new level by attaining his Bachelor of Visual Arts and Design.

Making a plan is great, but be prepared to deviate from it, Zielinski says. “Opportunity could look different to what you thought.”

Be Upfront With Your Prospective Employers

Disclosing the nature of your disability early on means both you and your employer know your abilities and skill levels. Many companies are eager to hire qualified people with chronic illnesses and disabilities, but they are afraid of uncertainty. Being crystal clear at the outset about what your capabilities are can go a long way to removing that uncertainty from the hiring equation.

“Often people have been living with their condition for a long time, so they know exactly what their abilities are,” says Zielinski. But a lot of times, what they can or can’t do because of their illness is the elephant in the room, which no one wants to directly address. It’s understandable that a job-seeker who is feeling sensitive about their limitations might want to avoid the subject, but it’s best to just tackle the issue head on.

“It’s important to establish those so everyone feels informed. Recently I worked with someone who has Cerebral Palsy, whose speech is affected. Other than that his disability is invisible, so someone hearing that can make assumptions. He’s learned to let people know what’s going on.”

Remember: You’re Worth Hiring. 

While it’s important to let people know if you have any limitations, Zielinski says it’s still critical to keep the focus of the interview on what you can do, not what you can’t. And a big part of that is being positive.

“People will be keen to work with you if you’re positive and committed, and clear about your limitations so they know all the information from the start,” she says. “Attitude is the number one key ingredient to getting a job. Most people can learn how to do a job, but what goes a long way is someone’s willingness, honesty and openness.”

“[Getting a job is] much more about ability than disability.”

Many disabled people can understandably feel defeated by the jobseeking process even before it starts. But it’s important to go in believing in yourself, and remember that you are worth hiring. Because if you’re not going to advocate for yourself as the best person for the job, who will?

At the end of the day, most employers want the most qualified and confident person for a job. Illness or disability doesn’t necessarily factor into that. “It’s much more about ability than disability,” Zielinski says.

Employment Is A Two-Way Street

Zielinski’s advice gels with my own experience. Though I never went back to my old job full-time, I have, in the years since, been able to reclaim a lot of my sense of purpose through volunteering my PR skills to a local women’s organization, as well as freelance writing, which lets me work around my illness and set a lot of my own deadlines.

And as for community: it’s just as key as Zielinski suggested. Isolation is an issue for many people with chronic illness and disabilities. Luckily for us, we live in a world where we can get connected even if we can’t leave the house. And we can get work that way too.

The statistics don’t lie. Disability is an ever-growing challenge, and people living with it are vastly underrepresented in the workforce. But all of us have something to offer. And our best efforts should be met by employers who recognize just how much talent is going untapped.

Advice

Ask Ada: Social Media Is Triggering My Grief At Being Chronically Ill

Ada helps a son come to terms with his relationship with his mother after her stroke. Plus, how to deal with jealousy and grief after PCOS.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Can I Find Closure With My Mother After Her Stroke?

Dear Ada —

I’m an only child, with a mother in a nursing home after a severe stroke, which diminished her greatly. Before her stroke, my mother was a very difficult woman whom I loved very much, but spent a lot of my time in conflict with, especially after my father died. She would constantly accuse me of not doing enough or spending enough time with her, and blame me for everything bad that happened to her, even though I was doing everything I could to help her.

I tried a lot of things over the years to try to have a better relationship with Mom, because I knew I was all she had. Nothing worked though, and I finally just decided that nothing would improve our relationship: my mother was a malignant narcissist, and there was nothing about that I could change.

But then the stroke happened. Since then, my mother is a totally different person. Although her cognition is severely impaired and she rarely speaks, she is much sweeter now than she once was. She also seems much more grateful for the things I do for her, and more likely to tell me I’m a good son, and that she loves me.

You’d think I’d be grateful for this, but instead, I’m conflicted. I keep on asking myself: Could I have misjudged my mother all these years? Is it only now that I’m seeing the sweet person she is at heart? But then I think to myself, no, it’s a personality change due to the brain damage.  But that just makes me feel even worse, because the truth is, I prefer Mom this way.

Can you offer any advice on how to come to terms with the toxic history my mother and I share, post-stroke? Thanks.

 Guilty Son

Let me start by saying something which may be obvious to you: your mother isn’t the same person anymore.  She can’t address any of the previous toxicity in your relationship.  The stroke your mother had permanently altered her personality, and if you are going to rebuild your relationship with her, it has to be with the person she is now, not the person she was.

Looking forward means accepting that, for all intents and purposes, the stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

The stroke has given you a new mother. One who is loving and grateful for your presence. It also means understanding that you won’t find closure to the past you experienced.

Of course, this all seems easier said than done though, doesn’t it? If you’re looking for instructions on how to move forward start here: write a letter to the former version of your mother. Tell her exactly how you feel. Let her know how she let you down, held you back, or made your life unbearable. Get everything out there and on the page. Then, once you’re confident you’ve let loose, destroy your letter. Burn it. Rip it up. Shred it. You have this opportunity to let your voice be heard.

As for whether you misjudged your mother, it’s important to remember that people are multifaceted. Just because someone is full of bile doesn’t mean there isn’t sweetness there; just because someone resents their child doesn’t mean they aren’t also grateful for them. Traumatic brain injuries like a stroke have a way of reorganizing those facets, and sometimes stripping them away. Instead of doubting yourself because the gentler facets of your mother’s personality are now more obvious, try to practice gratitude instead.

 

Photo by Lisa Johnson from Burst

After PCOS, Facebook Posts About My Friends’ Kids Are Making Me Sad

Dear Ada,

I have polycystic ovary syndrome (PCOS), and the scope of my condition means my partner and I can’t conceive. This alone has been a lot to come to terms with, but it’s made worse by the fact that all of my friends have had children in the past two years. Our lives are on different tracks now; I feel isolated from the emotional understanding they all seem to share.

I have good friends. They were hugely supportive of me when I learned pregnancy wasn’t an option for us. But lately, I’ve been feeling bitterness and resentment toward their lives, and this club they’re all a part of. I’ve been withdrawn, and have shut off all social media because their posts cause me pain.

Should I step away? My friends would likely respond graciously if I told them my feelings, but I don’t know if I can let go of the way I feel.

— Lonely Laura

Oh, my heart hurts for you. Not only has PCOS stripped you from the opportunity to have children, but it is also threatening to rob you of your friendships.

Because you’re still mourning, it’s important to protect yourself from things that trigger you. If you know that social media is one of them — like it is for so many people — continue to avoid it.

And get out there and make new friends who understand what you’re experiencing. There are so many support groups, locally and online, with women and couples who are also unable to conceive. Open up. Be vulnerable. Build a tribe who gets you.

Open up. Be vulnerable. Build a tribe who gets you.

But should you also avoid your friends at the same time?

No. Absolutely not.

The best friendships are flexible, allowing each of you to cling more or retreat slightly from the relationship as life happens around you. At this moment, you may not be able to fully immerse yourself in your relationships, but that doesn’t mean you should abandon them.

For friendships to really work, they require open communication and honesty. You know your friends want to support you, but you’re not giving them an opportunity to do so, and you need support right now, not distance.

Avoidance isn’t going to help you move through this. What will help is the love and support of your friends, both old and new.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Acute Illness

Bruce Willis, A Brain Hemorrhage, and Me

After a stroke put me in the hospital, I turned to the films of Bruce Willis to teach me how to Live Free and Die Hard.

Bruce Willis and I are nothing alike. For starters, he’s bald. He’s also much older, swarthier, and probably smells like strong coffee and freshly fired AK-47’s.

One would think Bruce’s job is to smoke a lot of cigarettes in his movies. But it’s actually to kill people. Usually while he’s bleeding or pointing a gun at someone, sometimes both. Guns don’t kill people. Bruce Willis and cigarettes kill people. Also, Bruce Willis with a cigarette in his mouth. That’ll kill you twice.

There’s something to be said for Sir Bruce’s concrete level of badassery. He’s 63 years old and probably has cigars older than me. I’d like to think that in his spare time he bounces off buildings and crashes stolen vehicles into storefronts. But no matter what he’s doing with his multi-million-dollar tough guy franchise, this much we know for sure: Bruce Willis is the king of cool.

Enter me, the opposite of cool.

I am so uncool that one time I had a brain hemorrhage.

In the fall of 2014, just five days into my brand new career as a high school history teacher, things started getting strange. Symptoms like throbbing ears, double-vision, and nausea quickly landed me in an emergency room in Denver, Colorado after a rather boring blind date with a gentleman I have since named “Day of Brain Hemorrhage Guy.”

In the fall of 2014, just five days into my brand new career as a high school history teacher, things started getting strange.

I laid on a little paper-covered table as a nurse revealed that an area of my brain was currently bleeding. The words “brain” and “bleeding” rang in my ears as I gripped my mother’s hands and went into shock. I shivered in a 95-degree room and had what I can only diagnose now as a panic attack. It was easily the least cool I’ve ever been.

No more quirky lesson plans for this gal! I had a new career now: trying to make sure my head didn’t hemorrhage any more than it already had.

After being sent home from the hospital with a bleeding brain to “wait and see” if the hemorrhage would inexplicably heal itself, I was instructed to remain on bedrest for six weeks. This meant no teaching, no driving, no blind dating. The hemorrhage was too deep in my brain to operate on, the doctors said. In some cases, blood reabsorbed back into the brain over time, making operation unnecessary. Best case scenario, I could watch The Fifth Element twenty-seven times and then go back to work with a fun story for my students in a few months when I was all better.

Mimi Hayes today.

However, during those six weeks, my brain began to wreak havoc on my body, wiping out the motor functions, vision, and speech ability on my left side. The blood wasn’t reabsorbing, it was expanding. I was having a slow-motion stroke. I lost twenty pounds of muscle mass. I even lost the taste buds on the left side of my tongue. After my taste buds went, my neurologist scheduled an emergency craniotomy.

It was around this time that I started to really get Bruce Willis on the brain. True, my life didn’t exactly look like a Bruce Willis movie. Sitting on the couch being sick isn’t much like an action-packed blockbuster. But in Bruce, what I did see was a role model of who I wanted to be in this strangely powerless situation. Sure, I couldn’t match his intensity or bodycount, but his grit and take-no-shits mentality could help me get through the toughest months of my life.

I’d need intensive physical and occupational therapy to rewire my neurons after brain surgery. I’d need to be in a rehabilitation hospital surrounded by elderly people for two weeks. I started asking myself: WWBWD? What Would Bruce Willis Do in this situation?

I started asking myself: WWBWD? What Would Bruce Willis Do in this situation?

So when I got out of my wheelchair and started wobbling down the halls of the hospital using a walker against my therapist’s orders, sure, I may have been being reckless. But I’d also crossed the Willis threshold. I was breaking rules now. And boy, did it feel good.

I put a miniature Bruce on my shoulder ̶ adorably sized but still just as deadly ̶ to mentor me through the challenges of relearning how to walk, talk, and see post-injury. A job that nobody, not even Bruce himself, had prepared me for at the age of twenty-two.

With every terrifying hospital experience and frustrating therapy session he was right there with a “good job, Kiddo” or an encouraging puff of his cigar. There were versions of him too, tailored to each situation I found myself in. When I needed a hardy dose of reality it was John McClane from Die Hard; when I needed a cool-headed hero’s response it was Harry S. Stamper from Armageddon. But no matter the Bruce sitting on my shoulder, the message was the same: you are going to get through this, Kiddo.

In just two weeks in an intensive rehabilitation center, I rewired my neurons. I’d done the impossible: after my brain bleed had practically turned me into Mr. Glass, I’d become Unbreakable.

I’d done the impossible: after my brain bleed had practically turned me into Mr. Glass, I’d become Unbreakable.

I walked myself out the front doors of rehab just two weeks after my surgery, a miracle considering the shape I’d been in upon entry. My vision was correcting itself; I was able to taste foods again. I could crush a logic puzzle and make a mean batch of chocolate chip cookies in the practice therapy kitchen. Silently, Bruce Willis nodded in pride and rose a congratulatory cigar to my healing body, then helped himself to a cookie or two.

I returned to the classroom to teach in January, a mere three months after my head exploded. I put together engaging lesson plans and rocked cute teacher outfits once again. I graded papers and attended those dreaded parent-teacher conferences. I made new seating charts to separate the talkers and made copies without breaking the copy machine. Sometimes I forgot I even had a brain hemorrhage in the first place.

That’s pretty cool.

Hey, maybe Bruce and I are not so different after all.

Disability Mental Health

How Gardening Healed My Mother After Her Stroke

My 93-year-old mother never really cared about her garden. Then she had a stroke, and growing vegetables became her passion.

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My mother never really cared much for gardening. Something of a black thumb, her interests were more confined to the great indoors: cooking, sewing, reading, and writing. When she did go out into the garden, her pruning was questionable, and her idea of planting was to wander around, sticking geranium twigs into the soil at random. As an 89-year-old widow who lived on her own, I would come by and take care of the flowers and shrubs, but she herself had little interest,

Then she had a stroke. Around four years ago, I was at Mamma’s when I noticed her speech was slurred and sensed something was wrong. Calling an ambulance, we discovered she’d had a brain hemorrhage. The months of rehabilitation that followed left her weak, out-of-sorts, and depressed. When she came home, I moved in for three weeks to provide some TLC, and while she sat in the garden on her doctor’s orders to lift her mood, I set out to make the nearby vegetable patch as fertile as the flowerbeds in the backyard.

In spring, I nourished the soil and planted Roma tomato seedlings. Next, I tracked down seeds for an uncommon radicchio my parents had eaten in their Italian hometown. My father grew the salad green (part of the chicory family) after they migrated to Australia in the mid-1950s. It was impossible to buy locally and since his death 30 years ago we had gone without. Mamma often mentioned it and had the odd craving for it. I sowed the seeds and covered the soil with wet newspaper to protect the crop from the elements. Just like Papà had done all those years ago.

The author’s mother, kneeling to water some plants in her garden.

Since she’d never really cared for gardening, I didn’t expect Mamma to care much about this. But my gardening-averse mum surprised me by showing interest in what I was growing. The word ‘radicchio’ must have stirred up memories of home-grown bitter greens so fresh you could feel them doing you good.

When Mamma regained strength, I moved back home and visited only on alternate days. With rain scarce that summer, the tomatoes and radicchio needed help and I suggested that she take over the watering. With a little persuasion, I convinced her to step into my job. Even before the stroke, Mamma’s arthritis made using her hands painful, but I hoped the task, which didn’t involve complex manual dexterity, would be manageable. It was worth a try.

She instantly took to her task, watering the tomatoes and radicchio diligently every day. And as the green fruit developed, we got excited about the first bounty. Disappointment can’t begin to describe the look on Mamma’s face when the tomatoes remained pea-sized and unripened, many with split skins. But soon, Mamma had laughed away her disappointment. We discussed what we’d do with the three tomatoes we’d salvaged: dice them and arrange the pulp on half a slice of crusty Italian bread? Make a spoonful of killer tomato sauce? The possibilities were hardly endless.

We fared better with the radicchio and did a merry dance around the kitchen table before the first taste-test. We ate it the northeast Italian way: with vinaigrette and hard-boiled eggs.

Later, Mamma’s list of heart and head ailments grew when she had a fall and broke her wrist. Then, six weeks later, she suffered a fracture to her foot chasing those rascally cats from the vegetable patch. I tried to take over the project, but she insisted she should persevere. With a pronounced limp, she kept up watering the plants every day, using Dad’s walking stick in her good hand for support while carrying the dribbling garden hose in her cast. Her tenacity to meet the challenges of aging and illness was remarkable.

Research shows that frail older adults need mental stimulation and regular physical activity. If, like my mother, they still live at home and have access to a garden or green space, they are halfway there.

After our abysmal harvest, I ripped out the tomato vines and planted Warrigal greens (New Zealand spinach), which grow in coastal areas in Australia and tick the ‘no fuss’ box. Out of nowhere, a kumara, or sweet potato, plant appeared. The heart-shaped leaves are edible and have a buttery taste when cooked. Best of all, they don’t attract pests and are impossible to kill. And her garden expanded into herbs and aromatics. Parsley, sage, rosemary, thyme, and basil make our dishes sing; the mint becomes herbal tea; Italian chilli peppers are added to braises; garlic is still a work in progress.

I ring often to remind Mamma to water the crops. At 93, her vascular dementia is starting to play havoc with her short-term memory. But she gets plenty of exercise while she waters and pulls weeds, and the daily dose of vitamin D does wonders for her bone health. And it’s great to see her cooking with home-grown, chemical-free vegetables. The abundance of produce is sometimes too much for us to eat, and the neighbors are happy to help out. We have these surplus donations to thank for her re-connecting with people after a period of social phobia.

What started as a form of therapy to match Mamma’s capabilities as a stroke survivor has become a genuine passion that gives her a sense of pleasure and personal achievement. Research shows that frail older adults need mental stimulation and regular physical activity. If, like my mother, they still live at home and have access to a garden or green space, they are halfway there.

Creative Commons photo by j_arlecchino.

Chronic Pain Disability Mental Health

Moleskines & Memory

After a stroke at 33 left her with amnesia, Christine Hyung-Oak Lee turned to journals to make sense of her present, her future, and her past.

When writer Christine Hyung-Oak Lee woke up with a splitting headache on New Year’s Eve of 2006, she thought it was just another one of the awful migraines that had plagued her for most of her thirty-three years.

As the day wore on, though, more alarming symptoms developed.

On a hike in Tahoe, she saw red snowblowers in a parking lot rotated ninety degrees—her world had literally turned upside-down. Numbers became squiggles; colors lost their names. She suffered from aphasia, substituting forgotten words with nonsense terms (making breakfast with her husband, she called eggs “shell-bells,” for example). But, having been trained as a child to remain stoic in the face of pain, Lee didn’t seek medical help for these symptoms until almost a week later.

Photo: Kristyn Stroble

Once she finally arrived in the hospital, an MRI revealed Lee had had a stroke. A blood clot had traveled up into her left thalamus, killing part of her brain. She could have died. Instead, she was left with anterograde amnesia, unable to form new memories or to retrieve many old ones. To compensate, she began taking meticulous notes in Moleskine journals. These served as a kind of external hard drive, storing the names of her doctors and new acquaintances, details of conversations she’d had, and records of her daily activities.

Eight years later, once she’d fully recovered, Lee turned to these journals while writing her astonishing new memoir, Tell Me Everything You Don’t Remember: The Stroke That Changed My Life. An expansion of her viral Buzzfeed essay, “I Had a Stroke at 33,” it weaves accessible explanations of neuroscience behind memory with lyrical, moving accounts of her own experience with memory’s fragility.

We talked to Lee about the unexpected perils of living fully in the present moment; how writing about her stroke saved her life; her experience of pre- and post-stroke depression; and why the world could benefit from a virtual reality machine that helps people empathize with the disabled.

Like Billy Pilgrim, the protagonist of Kurt Vonnegut’s Slaughterhouse-Five—the first paragraph of which you read over and over after experiencing memory loss—you became “unstuck in time” after having a stroke at age 33. For those who haven’t read your memoir: What does it feel like to live with the type of memory loss you experienced?

I lost my short-term memory in the wake of my stroke, which meant I couldn’t read more than a paragraph without having to start over (and over again), because I couldn’t remember what I’d read. It meant I couldn’t make a meal, because I’d forget what it was I was making—I’d burn the pan and scorch the toast and leave the mixer running. It meant I couldn’t remember a grocery list. It meant I didn’t remember conversations, so every conversation was lighthearted.

But at the same time, I couldn’t fret about the future and I couldn’t be anguished about the past. So even though I’d normally be frustrated about having to reread something, I didn’t have the mental capacity after my stroke to remember that I used to be able to remember and that I was supposed to remember—so I’d literally just start over again, without a bother in the world.

So in my case, it felt just fine—blissful even, until I’d recovered enough to realize the magnitude of my loss. Sometimes I’m nostalgic for those first few weeks of recovery.

Many of your post-stroke mental states echoed those sought by Zen monks, or psychonauts taking hallucinogens—an immersion in the present moment, unburdened by thoughts of past or future. “With the loss of memory, so much of my immediate pain was gone,” you write. “So much anxiety requires memory.” Is living fully in the present moment all it’s cracked up to be? Post-recovery, are you still able to access that state of immersion in the present moment, or at least better able to access it than you were pre-stroke?

Living fully in the present moment is pretty damn awesome. And there are times I wish I could achieve that state of mind again. I can sometimes touch that serenity when I do yoga, by envisioning the experience in my mind. But it’s elusive. It’s like trying to go back to your childhood; I’ve been able to be childlike, but I’ll never be able to achieve the state of childhood.

Living fully in the present moment is pretty damn awesome.

But here’s the thing: I learned firsthand that living in the present moment is not sustainable; it’s hell on the people around you, who are then burdened with all the planning and foresight.

In many ways, the stroke was a gift: “I was disarmed,” you write. “And because I was disarmed, I had to live life in a new way. I became different. At first I resented this difference. And then I accepted it. And then I loved it.” What do you think your life would be like now if you hadn’t had a stroke?

I’d probably be the same hard-driving, high-energy woman I used to be. Basically, like all the characters Parker Posey plays—you know, the ones where she is described as “making coffee nervous.”

It took you eight years to be ready to write the book that became Tell Me Everything You Don’t Remember. “Writing trauma feels impossible at first,” you write. What was the process of writing the book like? How did writing it help you heal—not just from the stroke, but from the series of traumas that preceded it, including the end of your marriage?

Writing Tell Me Everything You Don’t Remember saved my life. I was frankly going through the worst time of my life while writing the memoir. I’d had a baby after thirteen years of infertility—and had severe postpartum depression for nine months. My husband had an affair and then left me after eighteen years together. He had been the love of my life. I was crushed.

It took eight years to write about the stroke, because it took eight years to understand my stroke and its impact on my life. And it only became safe to examine my stroke after something else brought me to my knees. It was then that I found it bearable to look at the past.

It only became safe to examine my stroke after something else brought me to my knees. It was then that I found it bearable to look at the past.

So being able to step away from my ongoing life into the memoir was an incredible sanctuary, even if I was writing about something terrible that had happened to me. It was a way to make something painful, meaningful.  

What are some of your favorite books on the subject of illness and recovery?

Brain on Fire by Susanna Cahalan. Floyd Skloot’s In the Shadow of Memory. The Brand New Catastrophe by Mike Scalise.

You describe people’s eagerness to hear that you were “100% better” after your stroke. Many people get awkward and uncomfortable when talking to those suffering from illness—because they’re afraid of saying the wrong thing, because talking to a sick person reminds them of their own vulnerability and mortality, because they’re more comfortable with pleasantries and surface-level chitchat than difficult conversations about illness. What is the “right thing” to say or do for a friend, colleague, acquaintance going through an illness like yours? What were some of the most helpful things people said to you during your illness and recovery process?

I wish there were one right thing to say—there isn’t a magic line. On the other hand, there are many right things to say, but they require intuition and empathy.

The most helpful thing throughout recovery for me wasn’t what people said, but something they did: they listened.

The most helpful thing throughout recovery for me wasn’t what people said, but something they did: they listened.

Anything helpful friends said was informed by their listening. And by listening, I don’t mean an hour-long therapy session—but honestly, having a real conversation, even if for ten minutes. I think it’s helpful to ask people not “How are you?” but “How are you today?” Because in sickness, each day is so different, but you’re always pretty much sick.

Furthermore, I found it helpful when people didn’t just ask what I needed, but “What do you need today?” Specificity helps.

You write about how frustrating it was, after your stroke, to have to explain to people that you were ill—and for them to not really get it, because your body functioned normally and you looked “fine.” What do you wish more people had automatically understood about your condition? What would it take for us, as a society, to better understand and approach invisible disabilities like yours?

The cover of Tell Me Everything You Don’t Remember, now available on Amazon

When people with Lyme are active and socializing one week, and crippled by Lyme symptoms the next, I understand that illness ebbs and flows. I wouldn’t really understand this had I not had to recover from my stroke and experience firsthand the nature of illness and exhaustion and recovery and relapse.

It would be great to have a virtual reality machine through which we can each personally experience disability and while we’re at it, experience different ethnicities or genders or physicality or economic class. I feel like that would really help people develop empathy.

But to get to your question: I wish people had just accepted what I’d said. And gotten past their own discomfort. And here again, is where that wonderful virtual reality machine could be a solution.

Christine Hyung-Oak Lee’s book, Tell Me Everything You Don’t Remember, can be purchased on Amazon here.

Mental Health

Two Traumatized Brains, Aligned

As I recover from a stroke, I am better able to understand and relate to my mother's Parkinson's.

My mother’s neurological conditions lurked menacingly in the background for years, growing stronger until they were impossible to ignore. By contrast, my brain was rocked by a sudden and drastic explosion that came out of nowhere. Yet through these different routes, my mother and I found ourselves selves sharing a similar experience: one that was frightening and frustrating in equal measure.

In my mother’s case, it starts with lights in her brain starting to dim, ever so slowly. First came the tremors. Slight enough almost to ignore, except we’d seen my grandfather, who had Parkinson’s, exhibit those same tremors before he died, nearly three decades before. We tried to remain in blissful denial for as long as possible, but for my mother, she soon started living the cruelest sort of déjà vu. Soon, she was mixing up her words and calling us by the wrong names, until eventually, an official diagnosis came around that confirmed what we already knew: Parkinson’s Disease, along with Lewy Body Dementia.

Of course, I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke, and her challenges soon became a lot more relatable to me.

Like most strokes, mine exhibited itself both physically and mentally. The first sign: While I didn’t have tremors exactly, I was unable to control my hand movements, I lost control of my right arm and hand. At the hospital, I couldn’t sign my admission forms, or even hold a pen. My entire right arm seemed to have a mind of its own, flopping around in a way that made me feel like a seal with a broken flipper.

I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke.

Comparatively, the cognitive issues weren’t as evident right away, but ultimately, they were worse. The stress and confusion I experience in the early hours of the stroke masked the mental impact, at least at first. It wasn’t until later, after the urgent tasks of getting myself care had been completed, that I tried to focus, and realized I couldn’t. By the time an MRI showed that my stroke had occurred in an area of the brain associated with reading, writing and language comprehension, I already knew: I’d found myself constantly typing the wrong words, and felt that frustrating sensation of having a word on the tip of my tongue with alarming frequency.

For someone who writes for a living, and reads with passion, it was a major blow. Just trying to get through normal routine daily tasks—calling to make a doctor’s appointment or writing a casual email to a friend—was like running an obstacle course lined with forgotten words and foggy thoughts. The pages of my favorite books became minefields where words and sentences I’d read countless times before lost all meaning, and stopped me in my tracks. It was like something was suddenly blocking the route between my eyes and my brain.

The author and her mother on the day of her wedding.

One day, it dawned on me: This must be what it’s like for my mom.

It wasn’t quite exactly the same, of course. My mother’s diseases were progressive, and her symptoms were only going to get worse. In my case, the future was a big question mark. As my doctors kept reminding me, the brain is a complex and mysterious entity. Each stroke is a bit different, and so too is its aftermath. There’s no surefire way to predict which of my deficits will be permanent, and to what extent. Like many stroke patients, I did see spurts of improvement as I recovered, but it’s impossible to know when you have reached the point where it’s the best it’s going to get. Still, I do have a constant series of tiny victories, and moments when I discover that something has finally become easier. But my feelings of joy in these moments is now tempered by the realization that my mother will probably never enjoy those same kinds of all-important wins.

That’s when I contemplate the difference in our journeys. While many of our current challenges may be similar, we are like the proverbial ships passing in the night. Briefly in a similar spot right now, but arriving from different origins and destined to head off into separate paths.

I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience.

Our courses may only have converged for a short time, but I consider this a rare and valuable opportunity. I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience. This greater understanding of her reality has allowed me to have a deeper understanding of all of the many challenges she must overcome on a daily basis. In turn, this has motived me to be more patient and compassionate, and to look for ways that I can offer support that might make her life just a little bit easier.

I know that I will probably never to be able to fully grasp what it’s like to be in my mother’s position. However, I am grateful for this experience that has given me even just a little more appreciation into the courage and strength she must summon every day just to do simple things many of us take for granted. I now realize how much of a warrior she really is. And the same goes for everyone else who lives with neurological challenges and serious health issues.

I certainly won’t go so far as to say I’m glad I had a stroke. But I think there’s a positive silver lining to any experience that allows us to have greater compassion towards and understanding of those around us, and the struggles they may be facing in silence. I hope we can all look for opportunities to connect with those who need our support. Often, just knowing that someone is listening and can understanding their struggles can make a huge difference.

For me, this little glimpse into my mom’s world—however fleeting it may be—has truly changed my life. And I hope this shared connection and the effect it has had on me has also improved hers, in some small way.

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.”

Chronic Illness Diabetes Mental Health

From AIDS to Zika, New Books Teach Kids About Conditions

Whether Crohn's disease, lactose intolerance, or childhood depression, a growing number of children books feature diseases and ailments as their subjects.

In her picture book Even Superheroes Get Diabetes, author Sue Ganz-Schmitt tells the story of a boy named Kelvin who hates the constant fingers pricks and shots required by his diabetes. But with the help of a (medically accurate) insulin pump and a mysterious doctor, he becomes Super K, flying around the world with the doctor delivering insulin to other kids with diabetes.

Ganz-Schmitt wrote and subsequently self-published the story in 2007 after watching one of the families in her kids’ playgroup cope with type 1 diabetes. The son, Kaden Kessel, was weeks away from his third birthday when the family got the news. Suddenly his parents, who also had a newborn, had to constantly monitor his blood sugar to keep him healthy.

Sue Ganz-Schmidt, author of Even Superheroes Get Diabetes.

When Ganz-Schmitt searched for a story about childhood diabetes, she found picture books that offered comfort to families but nothing that went beyond comfort to actually inspire them. After attending events with JDRF, an organization that funds type 1 diabetes research, Ganz-Schmitt says she was struck by how empowered the kids were in speaking about diabetes, almost like real-life superheroes.

“When I first saw it, I was kind of in awe because … even though the kid becomes a superhero, he looks like me in the book and it’s based off of my story,” says Kessel, who’s now 17. The book was so inspiring to Kessel that he used it in sixth grade to become a sort of diabetic superhero himself, bringing it into school to defend a young classmate from being bullied for his diabetes in class.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose: Helping kids with a medical diagnosis understand what’s happening to their bodies or educating young readers about medical conditions a relative, friend or classmate might have. Not to mention teaching empathy.

Cover of My Grandpa Had A Stroke.

Some of these books have such niche appeal that they’re self-published. However, the American Psychological Association has a publishing imprint called Magination Press that specifically publishes fiction and nonfiction books for kids and teens around mental health issues, including medical diagnosis and also topics like mindfulness and learning disabilities.

“With any kind of physical illness or mental health issue, there’s an emotional, social and mental component to that,” says Kristine Enderle, director of Magination Press. Its medical-themed picture books include Danny and the Blue Cloud: Coping with Childhood Depression (by James M. Foley, DEd, 2016) about a bear learning “Feel-Good Rules” for dealing with depression, and My Grandpa Had a Stroke (by Dori Hillestad Butler, 2007) about a little boy who must learn to adapt after his grandfather has a stroke.

Danny and the Blue Cloud, a book that teaches kids about depression.

“We try to empower kids,” Enderle says. “We never really want to tell them what to do or how to feel or how to fix it, but we hopefully provide them with enough information and context that’s all rooted in evidence-based psychology.” To that end, most Magination Press titles are written by child psychologists, counselors or other medical professionals and include a note to parents on how to talk to kids about these issues and organizations they can tap for additional resources.

“We feel like there’s great power in this information and understanding the psychological and emotional side of things,” Enderle adds.

Frank Sileo is a New Jersey-based psychologist who’s written several picture books for Magination Press. He got the idea for his first picture book (published by a different publisher, who’s now defunct) from doing biblio-therapy with his young patients. “[With biblio-therapy] you read a book to a child about a particular problem, talk about the problem, and it validates their thoughts and feelings,” he explains.

Toilet Paper Flowers, a book about Crohn’s Disease.

When patients asked for a book about Crohn’s disease, Sileo couldn’t find one. Instead, since Sileo suffers from Crohn’s himself, he decided to write a picture book and Toilet Paper Flowers: A Story for Children about Crohn’s Disease was born. In it, a little girl with Crohn’s disease spends so much time in the bathroom, she makes toilet paper flowers and shares them with her friend.

Sileo’s second book was inspired by a patient who was bullied for being allergic to regular daily milk, so Hold the Cheese Please! A Story for Children about Lactose Intolerance. The story teaches kids about lactose intolerance (not to be confused with an allergy, as Sileo points out) and encourages them to accept each other’s differences. “It’s hard to be a kid and not have those things [like milk],” Sileo says, peppering his speech with medical puns.

Ganz-Schmitt’s second book, The Princess and the Peanut: A Royally Allergic Tale, also tackles food allergies. When she self-published the book in 2011, some parents erroneously believed that food allergies were made up (like Santa Claus or the Easter Bunny, Ganz-Schmitt quips) and didn’t understand their severity. “I was just so astounded what those families [with serious food allergies] had to go through,” she says. “Every bite was walking into a minefield for them.”

Full cover of Even Superheroes Get Diabetes

Ganz-Schmitt hoped by that educating children about food allergies, even those who didn’t have allergies themselves, those children will look out for siblings, friends or classmates who could suffer serious consequences from exposure to allergens. “‘Oh no, Mom, you can’t put peanuts in those cookies!’” she says. “They get it immediately and they really join the community of people who care for these children.”

As for Kessel–the original Super K–he’s now the JDRF walk ambassador for the Los Angeles Walk and is working to get the Latino community to join the walk and gain better access to medical care, similar to how his picture book counterpart helped others with diabetes.

He went through a rough period around age eight or nine where he wondered why he’d gotten a disease that doesn’t run in his family. Now he takes a more philosophical approach, pointing that the perseverance people with diabetics learn helps many of them excel in elite sports and business. “It’s hard and it sucks sometimes and none of my friends have it–all of that is true–but I feel like it’s been a blessing in disguise because the things I have learned from it,” he says.

And it all started with a book. For further reading with your kids on living with conditions, we suggest starting with these:

  •    AIDS: “The Gathering Tree” by Larry Loyie with Constance Brissenden, illustrated by Heather D. Holman, Theytus Books, 2006
  •    Alzheimer’s disease:Always My Grandpa: A Story for Children About Alzheimer’s Diseaseby Linda Scacco, PhD, illustrated by Nicole Wong, Magination Press, 2005
  •    Autism: “All My Stripes: A Story for Children with Autism,” by Shaina Rudolph and Danielle Royer, illustrated by Jennifer Zivoin, Magination Press, 2015
  •    Cancer:When Billy Went Bald” by Julie C. Morse, illustrated by Alexandra Higgins, Skyscraper Press, 2012
  •    Crohn’s disease: “Toilet Paper Flowers: A Story for Children About Crohn’s Disease” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2005
  •    Depression: “Danny and the Blue Cloud: Coping with Childhood Depression” by James M. Foley, DEd, illustrated by Shirley Ng-Benitez, Magination Press, 2016
  •    Diabetes: “Even Superheroes Get Diabetes” by Sue Ganz-Schmitt, illustrated by Micah Chambers-Goldberg, Dog Ear Publishing, 2007
  •    Down’s syndrome:47 Strings: Tessa’s Special Code,” by Becky Carey; illustrated by Bonnie Leick, Little Creek Press, 2015
  •    Food allergies: “The Bugabees: Friends with Food Allergies” by Amy Recob, illustrated by 64 Colors, Beaver’s Pond Press, 2009
  •    Food intolerances:Woolfred Cannot Eat Dandelions: A Tale of Being True to Your Tummy” by Claudine Crangle, Magination Press, 2014
  •    Lactose intolerance: “Hold the Cheese Please! A Story for Children about Lactose Intolerance” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2009
  •    Leukemia: “Chemo to the Rescue: A Children’s Book About Leukemia” by mother-daughter duo Mary Brent and Caitlin Knutsson, Authorhouse UK, 2008
  •    Heart defect: “Riley’s Heart Machine” by Lori M. Jones, illustrated by Julie Hammond, Guardian Angel Publishing, 2012
  •    Post-traumatic stress disorder (PTSD): “Why is Dad so Mad?” by Seth Kastle, illustrated by Karissa Gonzalez-Othon and “Why is Mom so Mad?” by Seth Kastle and Julia Kastle, illustrated by Karissa Gonzalez-Othon, both Tall Tale Press, 2015.
  •  Stroke: “My Grandpa Had a Stroke” by Dori Hillestad Butler, illustrated by Nicole Wong, Magination Press, 2007