Cancer Chronic Illness

Why The ‘Saw’ Films Are Relatable To Anyone Who Is Chronically Ill

The series' titular serial killer might be a monster, but part of what turned him into one was our broken, unfair healthcare system.

The Saw movies are regularly classified as torture porn, on account of the extremely graphic deaths that occur throughout the franchise. But it’s actually rare to find a series of films so committed to exploring healthcare, a life-changing diagnosis, and what living a meaningful life really means when you’re faced with your own mortality. They’re not everyone’s cup of tea, but for those of us who know the real torture of trying to navigate the modern healthcare system while chronically ill, the Saw series of films can, in their own way, be a guilty tonic.

In the Saw series, a murderer going by the name of Jigsaw (Tobin Bell) places people in elaborate traps, forcing them to fight for their lives. As the authorities try to track the enigmatic killer down, his schemes only get more sophisticated. Jigsaw’s catchphrase, revealed in Saw II, sums up his core motivation for killing—“Those who don’t appreciate life do not deserve life.” But what strikes me about Jigsaw is that he’s not “just” a monster: he’s also chronically ill himself, and outraged by issues such as the unfairness and impenetrability of our health insurance system, as well as larger issues around healthcare equality.

For those of us who know the real torture of trying to navigate the modern healthcare system while chronically ill, the Saw series of films can, in their own way, be a guilty tonic.

Over the course of seven Saw movies, and the recently rebooted Jigsaw, we learn about the man behind the mask—John Kramer—and what drives him to play quite so many games, along with his handmade companion, Billy the Puppet. The reason, it turns out, is his own diagnosis with colon cancer, which metastasizes into an inoperable frontal lobe tumor. But instead of using cancer as a cheap plot point the way that many movies do, the Saw films use the condition as their main character’s greatest motivator. Kramer realizes that he’s been given a second chance at life, and is intent on making others appreciate what they have, too—albeit, using clearly deranged methods.

I don’t have cancer, and can’t speak to what that’s like (I have my own smörgåsbord of health issues), but my mom passed away from metastatic bowel cancer three years ago. Mom wanted as much life as she could possibly get, and in this one small way, John Kramer reminds me of her.  

A photo of the killer from the Saw movies, John Kramer, as well as his creepy puppet, Billy.
John Kramer, aka ‘Jigsaw’, and his creepy puppet, Billy.

One of Jigsaw’s most relatable moments happens in 2005’s Saw II, when Kramer explains the moment he realized his mortality was achingly close: “Can you imagine what it feels like for someone to sit you down and tell you that you’re dying? The gravity of that. The clock’s ticking for you. In a split second, your world’s cracked open. You look at things differently. You smell things differently. You savor everything be it a glass of water or a walk in the park. But most people have the luxury of not knowing when that clock’s going to go off. And the irony of it is that keeps them from really living their life.”

While Jigsaw takes his own epiphany too literally, leading him to place victims in murderous situations, any diagnosis can be a life-altering shift.

While Jigsaw takes his own epiphany too literally, leading him to place victims in murderous situations, any diagnosis can be a life-altering shift. For instance, I made several major changes in my personal life following a diagnosis with MS in 2013, such as moving across the country and leaving a long-term relationship behind. Any illness or condition has the power to bring things into sharp focus, or blur them beyond all recognition.

As the series progresses, it’s eventually revealed that Kramer’s own diagnosis didn’t come as quickly as it could have. In 2017’s Jigsaw, Kramer tragically reveals: “Were it not for a careless mistake by a resident of the hospital I was in, my cancer could have been diagnosed a lot sooner. It was simply the wrong name on an X-ray.” This delay undoubtedly influenced the anger the antagonist felt at not receiving the appropriate care he required. Kramer laments in 2006’s Saw III, all patients “need a competent physician who looks them in the eye and treats them like human beings,” something he seems to have lacked. But rather than simply pursuing revenge, Kramer becomes a patient advocate of sorts, fighting on behalf of other chronically and terminally ill individuals (when he’s not busy setting traps, that is).

This is no more evident that in 2009’s Saw VI, which puts access to healthcare and insurance under a UV light. When seeking an experimental treatment for his cancer, Kramer is told by his insurance company, Umbrella Health, that the procedure will not be covered, mainly because it isn’t financially viable due to his age and prognosis. The algorithm used by the company makes a plethora of patients disqualified from treatments which could improve their conditions and potentially save their lives. This major injustice doesn’t sit well with Kramer.

A woman in a rusty torture device.
In the Saw movies, Jigsaw puts his victims in deadly contraptions and make them make impossible choices in order to live. It’s a metaphor for the chronically ill experience.

The desire to explore a universal topic, which continues to impact upon chronically and terminally ill individuals on a daily basis even now, shifted the focus of the horror franchise entirely. Rather than simply documenting the conquests of a deranged killer (which the movies still do, of course), Saw VI asked why all humans aren’t treated equally when it comes to the level of care they receive and the treatment they’re able to access. Money is at fault, too, with financial inequality viewed every bit as damning as an insurance company’s impersonal, lottery-like, algorithm.

Jigsaw’s solutions aren’t for the faint of heart, but his unwavering belief that life should be savored melts even the stone in my chest.

Kramer, of course, uses his insurance denial as another motivator, and a chance to examine the unjust areas of society he’s intent on adjusting. He exclaims, “Once you see death up close, then you know what the value of life is,” although his words aren’t enough to change the insurance company’s decision. Kramer sets traps for every Umbrella Health agent responsible for his denial from beyond the grave, by way of his ever-growing list of protégés, but healthcare inequality is insurmountable even for a prolific serial killer to tackle, sadly.

For all these reasons and more, I’m relieved that the Jigsaw Killer will reportedly be returning for a ninth instalment in the franchise. Gore that burns into your eye sockets, and blood-curdling traps aren’t for everyone. My mom hated gore, but she’d have loved John Kramer’s bad attitude and penchant for justice. Jigsaw’s solutions aren’t for the faint of heart, but his unwavering belief that life should be savored melts even the stone in my chest.

Chronic Illness

“Yes, And…”: The Critical Improv Skill That Can Help You Live Life With Chronic Illness To The Fullest

In improv, you're trained to keep building the story, no matter what. I found out firsthand the same skill is important in chronic illness.

Imagine this scene: A woman lies in bed, waking up, and looks over to her calendar to see what her day holds. “Wow,” she sleepily says, “I’ve got a lot to get done today.” Just as she’s about to get up, another person walks in. “Hold it,” he says. “I’m Pain, and you’re not going anywhere today.” The woman looks at Pain, frustration written across her face…

The woman in the above scene is faced with a dilemma. Her plans have been changed with the introduction of Pain, and she needs to decide how to react. Does she ignore Pain and push past him? Does she pretend he never entered the room? Or, conversely, does she follow one of the main rules of improv, and instead of resisting this plot twist, accept it with a “yes, and…?”

“Yes, And…” in Improv and Beyond

The concept of “yes, and…” in improv is a very important one. It says that you’re agreeing to what is happening in the scene. In addition, with the ‘and…’ you’re contributing to moving the scene forward further. Even if you originally imagined the scene going in one direction, if your partner throws out a completely new idea, you go with it. Instead of digging in your heals and resisting the change, you accept it and add on to the new storyline.

Instead of digging in your heals and resisting the change, you accept it and add on to the new storyline.

Over a decade ago I took a week-long improv class where I learned this concept, creating silly scenes with other novice actors. While I’ve forgotten much of what I learned over that week, the idea of “yes, and…” stuck with me. Little did I know when taking the class, however, that this foundational rule of improv would become so vital years later in how I view and navigate my life with chronic illness.

Saying Yes to the Changes

One of the hardest things when dealing with chronic illness can be accepting the changes to your life. When I first became ill, I very much resisted the changes. This was not the way I had expected my life to go! This was not the storyline I’d mapped out in my mind, and I didn’t want to have to change course. My chronic illness was introducing major plot twists into my life that stymied my plans and goals.

But just like saying ‘no’ during improv can completely kill the scene, saying ‘no’ to the changes thrown our way during chronic illness can halt the progress of our lives. When I fought against the changes instead of accepting them, I was unable to move forward. I became depressed and couldn’t see a future, focusing instead on all the things that wouldn’t happen due to my illness. I was stuck, and my life story wasn’t unfolding.

During a conversation with my therapist about radical acceptance I suddenly recalled my improv class from years prior and the concept of “yes, and…” What if I thought of my chronic illness as my scene partner who I had to work with to create this storyline?

Just like saying ‘no’ during improv can completely kill the scene, saying ‘no’ to the changes thrown our way during chronic illness can halt the progress of our lives.

I realized that my scene partner, my chronic illness, was introducing changes into my life whether I wanted to or not. Just like in improv, we may not always like what our partner introduces into a scene, but in order to keep the scene moving, saying ‘yes’ to it is imperative.

I had the choice to either resist these changes like I had been doing, or say ‘yes’ to them. I chose the latter and began, with every curveball my chronic illness introduced, to accept my new reality and the new direction of my story.

Saying And… to the Changes

The thing is, the concept of “yes, and…” in improv isn’t just about accepting; it also involves the ‘and’ where you add on to the ideas and continue to contribute to the scene. While saying ‘yes’ allows the scene to continue, without the ‘and…’ it doesn’t move the storyline forward any.

I had begun to say ‘yes’ to my evolving story and how chronic illness changed my life. I could no longer work the job I once did, a lot of my hobbies were no longer feasible given my limitations, and I couldn’t parent the way I used to. I’d gotten to where I could accept these things. But just accepting them was not enough. If I wanted my storyline to continue, I had to contribute to it. I had to say “yes, and…”

One of my favorite things about improv is that there are so many options for directions to take a scene. When a plot twist is introduced, you get to decide where to go with that. Every time new changes are introduced, it provides new opportunities for you to get creative.

If I wanted my storyline to continue, I had to contribute to it. I had to say “yes, and…”

The same is true with living with chronic illness. And while it doesn’t feel great to be having all these changes thrown my way, each one gives me the chance to see how I want my story to go from there.

Now, when chronic illness tells me I won’t be working full-time, I can reply with “Yes, and I’ll write more often!” When it tells me I’m going to need a cane, I say, “Yes, and I’m going to decorate it and go dance with it!” And on those days Pain walks into my bedroom shouting, “You’re not going anywhere today!” I nod: “Yes. My other plans can wait; today is the perfect day to order food and have a movie marathon.”

Not only does “yes, and…” help me to keep on with my life, but it also helps me to once again feel like an active participant in it. When I first became chronically ill and was fighting against the changes, I felt defeated and tired. When I began accepting the change, I felt better, but still passive and resigned. Now, as I practice saying “yes, and” to the plot twists created by chronic illness, I feel actively engaged and optimistic about the story I am creating with this life.

Chronic Illness

When Embarrassment Can Kill

For years, shame and embarrassment stopped me from talking about my symptoms with doctors. My silence could have killed me.

In my family, we had a mantra: if you can walk, you’re fine. Which is why from the ages of 18 to 27 I avoided the doctor’s office at all costs.

I wasn’t scared of doctors, just stubborn and easily embarrassed. What teenager wouldn’t be embarrassed to go into someone’s office and tell them about my finicky digestion and ongoing constipation issues, let alone the occasional bloody stool? Everyone has those, right?

Then, in 2018, I found out firsthand how embarrassing avoiding the doctor could get.

It was August. I had just gotten back from visiting my parents in Illinois and I thought that I had caught a stomach bug. On the drive back to Massachusetts, I stopped to go to the bathroom 11 times, and what I saw in the toilet after was enough to make me sick, even if my stomach wasn’t already cramping something awful. Still, I decided it probably wasn’t anything to worry about, and went to work.

It was Wednesday and I was in trouble. I opened the shop that I managed, but had to lock the door every thirty minutes to run to the back and go to the bathroom. On Thursday I didn’t even bother locking the door and on Friday I called in sick, something I almost never do. That last day I didn’t even make it to the toilet.

I spent the next week floating between the couch and the bathroom. I couldn’t go to work or school. Before I knew it, a month had gone by. I felt myself wasting away.

I couldn’t go to work or school. Before I knew it, a month had gone by.

The nurse practitioner that met with me was absolutely lovely. With perfect hair and beautifully manicured hair, Rachel  invited confidence… but as I sat in front of her, reciting my symptoms, I stared a hole in the floor, I was so mortified. When I referenced my bowel movements, I used weird hand gestures; the whole interview, I kept my head ducked in a fit of shame. Rachel prescribed a high dose of Prednisone and booked me for every blood test she could think of—every infectious disease included. I was just getting up the courage to look her in the eye when Rachel told me I’d have to poop in a cup. I felt myself start to sink into the floor.

My official diagnosis after the blood work, the stool samples, and the resulting colonoscopy was severe Ulcerative Colitis, severe Gastritis and Barrett’s Esophagus. All of my doctors told me similar stories: I was very lucky. Unlike most people that suffer from Ulcerative Colitis and Irritable Bowel Disease, I had somehow avoided hospitalization altogether. I didn’t have to have major surgery. I didn’t end up with an ostomy bag. I didn’t end up with permanent damage from all of the vitamin deficiency I had put my body through for years.  I was very lucky indeed. My experience didn’t match the odds.

My gastro sent me home with a file from the colonoscopy. When I opened it to check it out I was met with a few shocking photos from inside my body. My gut looked like something from a horror movie. Pus dripped from my fiery red intestinal walls. Blood seeped from pockets of infection. I flipped the folder shut quickly and tossed in into the bottom drawer of my desk.

My embarrassment almost landed me in the morgue.

The only good thing that came out of my experience was the knowledge I gained. I am not just a statistic. Ulcerative Colitis is a chronic disease that causes ulceration of the inner lining of the colon and rectum.  It is a type of Irritable Bowel Disease (IBD), like Crohn’s Disease. There is no cure, but the disease can go into remission. At times it can be debilitating while at other times it feels like nothing at all. It is a disease that comes in mild, moderate and severe but all stages can be horrible. In my case, I was gifted with bleeding intestines, uncontrollable diarrhea and severe abdominal pain. I ran a consistent fever, had night sweats and was extremely anemic. Later I would learn that I was B12 deficient as well—so much so that my doctors aren’t sure how I ended up without permanent neurological damage.

According the Center for Disease Control almost 3 million adults in the United States have been diagnosed with some form of IBD. Most people are diagnosed in their 20s and 30s. I was diagnosed when I was 26. Embarrassment shouldn’t be a factor as to whether or not you see a doctor for a medical issue. You can still be a strong, independent woman and seek help. It doesn’t lessen you as a human, even if you have to poop in a cup.

Cancer Chronic Illness Profiles

Chronic Illness When You’re Twins

Through cancer and celiac disease, these twins helped each other through their diagnoses.

Growing up, Robin Melamed and Tara Liebnick, now 45, were typical twins. They shared the same group of friends and more often than not, they completed each other’s sentences. In college, they joined the same sorority. Then, in their thirties and within a matter of months, the twins got the news—they both had cancer.

Facing a double mastectomy, they mulled over a procedure to rebuild their breasts. Melamed, who panics when she reads about health-related topics online, depended on Liebnick’s research to decide. During Liebnick’s chemo, Melamed flew to Dallas to help out and cheered on her nephew at his soccer games. Through hysterectomies, chemotherapy and lengthy hospital stays, the twins found solace in their relationship that’s like no other.

They’re not alone. Many twins with chronic illness have found that navigating their condition together has both grounded them and lifted them up.

Robin Melamed and Tara Liebnick are twins who navigated cancer diagnoses at the same time.

Cancer When You’re Twins

“What’s made it easier is having each other,” said Melamed, who lives in Houston. “It’s helpful we’re so much alike. We know how to be there for each other. We know what to say and what not to say. Going through this together has strengthened our relationship.”

Liebnick was the first to find out. She felt a lump in her breast. Cancer, her doctor said. Then, she tested positive for the BRCA1 gene mutation, which put her at a high risk for having both breast and ovarian cancer. Melamed was browsing the racks at Nordstrom’s in Houston when their dad called and broke the news about her sister’s diagnosis. She was devastated.

“It was a very scary time,” Melamed said. She also knew that if Tara had tested positive for the mutation, she would too. “I thought, fine, I’ll have preventative surgeries. At the time, it wasn’t on my mind I’d be dealing with cancer first-hand.” Melamed, who didn’t have any symptoms, still decided to have both breasts and her uterus removed. That’s when they discovered she too had cancer, in her abdomen.

“I don’t know how I would have gotten through [cancer] without her…”

As the months progressed, the sisters spoke multiple times a day and late into the night after their kids went to bed, on the phone, by text and over email. When Melamed had surgery to remove the cancer in her abdomen, then got an infection, Liebnick flew to Houston. She slept on a pull-out couch in Melamed’s hospital room for nine nights.

As Melamed lay there, moving in and out of consciousness, Liebnick knew how to bring a smile to her twin’s face. She played the Hamilton soundtrack for her on her phone and wheeled Melamed outside to get fresh air.

“I don’t know how I would have gotten through that without her,” Melamed said. When Melamed finally came home, she recovered in a rented recliner chair. The suggestion had come from her sister, who’d rented one after chemo.

Fraternal twins Jamie Serrano and Zach Friedlander were both diagnosed with celiac disease around the same time. 

Celiac When You’re Fraternal

Fraternal twins Jamie Serrano and Zach Friedlander, 29, have supported each other through chronic illness as well. The twins always had diverging interests. Serrano is more of a book worm; Friedlander was the physical twin. Having celiac disease has given them something to bond over.

Serrano was the first to get diagnosed. She was 16, volunteering in rural Mexico for the summer and wasn’t feeling quite right. Her stomach was off, but she assumed she had a virus or traveler’s diarrhea. She stuck to bland foods like flour tortillas and made do. Back in the U.S., doctors ran a blood test. It was positive for celiac. “An endoscopy showed my intestines were demolished,” she said.

Serrano changed her diet, cut out gluten and focused on fruits, vegetables and proteins. She learned to navigate eating out—which restaurants were safe, what questions to ask to make sure she didn’t get “glutened.” She studied food labels and learned where hidden gluten can lurk.

Friedlander got tested at the time too, even though he had no symptoms. But, he was negative for celiac. So, he forged on, enjoying beers and burgers during his college years and indulging during regular visits to Taco Bell. Then, a few years ago he noticed he was getting light-headed and dizzy. He was anemic. It was celiac.

“It’s given us something to bond over.”

Soon after, Serrano went in for a regular endoscopy to check her intestines. Her brother set one up for the same day. Afterwards it was clear; they both had celiac. As nurses pushed them into the waiting room in wheelchairs, Friedlander told Serrano he wanted to have one last gluten-filled hurrah. Pizza, burgers, beer, cookies and cake. Serrano set him straight.

“She said ‘no you can’t do that,’” Friedlander said. “She told me stories about people who don’t follow the diet, what can happen to them.”

From then on, Serrano has served as her brother’s guide, facilitating his way into the world of gluten-free eating. After his diagnosis, Friedlander regularly snapped photos of food labels and texted them to his sister to screen for gluten. When he moved back home to Chicago from Indiana, she showed him the best gluten-free friendly restaurants, and at grocery stores, pointed out the tastiest gluten-free cookies and crackers.

“It’s given us something to bond over,” Serrano says. “I’ve helped him navigate everything, and we enjoy sharing gluten free food together.”

The twins talk more today than they did in the past, Friedlander said. “It’s been a big help having her,” he said, “and I know she’s enjoyed helping me and having someone who can relate to her. We talk more now. We’re more open and we’re closer because of it.”

Cancer Chronic Illness Essays

Cancer Was My Crucible, And It Made Me More Compassionate

The tragedies of illness can be agonizing to endure, but oftentimes, we come out the other side more loving people than when we went in.

If you saw my friend in the check out line at the grocery store with an expensive bottle of wine, you might feel envious. Jan is a traffic-stopper. Her facial features are perfectly symmetrical and her skin is dewy perfection. You might assume she’s on her way to a fancy dinner party with a better looking date than your husband.

When she came over yesterday, she wore a striking red tunic on her head with a matching red rose tucked behind her ear, a look only a movie star could pull off. It wasn’t one of those coverings that screams Breast Cancer in all caps like most head scarves do, no matter how cleverly they’re tied, piled, wrapped, or draped. Hers had the touch of a deliberate statement, a sense of style sported by a woman who can own any room she enters.

I couldn’t help contrasting her wrap with the one and only head cover I bought in anticipation of my own hair loss back when I got my diagnosis. The American Cancer Society website sold me a white cotton skullcap that looked good on the model, but I knew better than to have any faith in it even as I entered my credit card information. At the time, those scraps of cotton were offered at two for fifteen dollars or one for eleven, and I visualized an underpaid, overworked laborer cranking them out in a dimly lit factory for tightwads like me.

I’m not giving cancer an extra dime, I thought.

I’m not giving cancer an extra dime, I thought, and I ordered only one. It was comfortable but hideous, and I wore it all the time for nearly a year except when it was in the wash. My friend Rebecca sent me fun hats and a bright green wig, but I couldn’t find my playful side when it came to being bald, and trying to look glamorous hadn’t even occurred to me.

When Jan and her turban walked into my living room yesterday, I rushed to take her in my arms. We’ve met in person on only one other occasion, and it was just before she started treatment. Seeing her in person again overwhelmed me.

If it’s possible to touch grief, to taste it, to smell its fragrance, I would say that’s what I did when we embraced. After Jan’s first chemo session, she lost her child to suicide. On the morning of her daughter’s memorial service, Jan woke up with pneumonia. While we hugged, I brushed against the bottomless pit of her sorrow.

While we hugged, I brushed against the bottomless pit of her sorrow.

Looking at Jan’s manicured nails and curated outfit, no one would guess the depth of her suffering. It reminded me of a time in my life when I too endured a sustained season of grief.

During my twenties, my boss’s husband put a gun in his mouth and pulled the trigger. Then a friend with bi-polar disease killed his mother in a terrible psychotic episode. Shortly thereafter, my friend Bill, a guy who wore his homosexuality like a badge of honor, fatally overdosed on street drugs. My friend Kathy made an unsuccessful attempt on her life and then my friend Glenda lay down on the blind curve of a freeway until an unwitting motorist ended her painful existence. It seemed at the time that sadness had no floor, that my very survival required me to trudge through one brutal moment at a time. Most people saw the smile on my face and never knew about my struggle.

Sometimes back then I pictured God throwing rocks at me, his aim spot-on, his appetite unquenchable. I was in therapy for trauma I experienced as a child and the series of bad choices that trauma prompted me to take, choices that piled one miserable circumstance on another.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

I don’t know how Jan will survive the loss of her daughter or the effort cancer demands from people it ensnares in its web. I only know that we have to be gentle, to love one another every chance we get.

First Corinthians reminds us that “Love bears all things, believes all things, hopes all things, endures all things. Love never fails.”

Sometimes love feels as thin as a strand of dental floss, but it’s there, as undeniable as the rising sun in the morning, the stars at night, and the toil of the days. Ultimately, it’s all we have, and I’ve come to believe, no matter how difficult it is sometimes, that somehow, it’s enough.

Chronic Illness Essays

When Lightning Strikes Twice

Just because you make it through one diagnosis doesn't mean you're immune to others. When it comes to chronic illness, lightning does indeed strike twice.

“We’re safe here,” my dad said as we sat in his burgundy Buick in the parking lot of the White Hen Pantry just forty-one miles south of Chicago. A thunderstorm had rolled in. My younger sister and I sat in the car staring out the window as my dad explained the logistics of the storm and our safety.

“Cars are grounded by the tires,” he said. “If lightning strikes, the electricity will travel around and go straight into the asphalt. It won’t hurt us.”

“How do you know?” I asked.

“Because it happened to me in high school,” Dad said. “My friends and I were hanging out in a parking lot when our car got hit. It was loud. The car lit up, but we were safe.”

I was eight years old. I never questioned my dad’s logic or his story. His role as protector has always been clear. At thirty-eight I just googled this safety phenomena. While his explanation was a little off scientifically—the tires aren’t what grounds the car –he was still correct. We were safe.

A young Cory Martin with her dad and sister.

Lightning Strikes

From that moment in the parking lot on I preferred to spend storms in a car or resorted back to what my sister and I had always done as young girls –climb into our parents’ bed in the middle of the night and cuddle between them. Whatever raged outside would not touch us until it did.

Lightning struck one summer day a couple years later. We were all at home inside playing a game in the family room, counting the seconds between when we saw the flash and when the resounding boom echoed through the house. As the rain came down harder, the seconds went from 5 to 4 to 3 to 2 to BOOM!

There was a bright light then an immediate bang followed by the distinct smell of smoke. Our parents called 911. Sirens roared and the engines pulled into the driveway. The firemen went into the attic, then climbed onto the roof. The electric bolt had hit the chimney. A few bricks were knocked free from their masonry place, but the burnt smell was just an after effect of a few wires being burned. There was no fire. The house was safe.

There was a bright light then an immediate bang followed by the distinct smell of smoke.

From then on, all major appliances including our Apple IIGs were plugged not directly into the wall but into a circuit protector that was then plugged into the house. The firefighters had said we were lucky. Next time we might not be. We should take proper precautions.

“But lightning doesn’t strike twice, does it?” my mom asked.

The firefighters shrugged. “Better to be safe than sorry,” they said.

And so, we lived under a veil of protection. Circuit protectors, a Buick, then a Jeep, then a Ford Taurus. When I was in high school, we lived in a different house where the basement was finished. We spent storms of the ferocious kind hiding ten feet under.

Author Cory Martin on Venice Beach.

Then Came MS

When I left for college and moved from the comfort of Midwestern suburbia to the heart of Los Angeles, there were no real storms to fear, just an occasional rumble of the earth. I didn’t need the protection of four Firestone tires or the calming presence of Mom and Dad. I was an adult now, ready to face the world.

And I did. I studied writing and literature in school. I graduated. I secured a job. All was calm and as it should be.

Then another storm came. Its bolts more intense than I’d ever seen. When it struck my body, I was unprotected. There was no safety of a car or the arms of my parents. The lightning had two names. Multiple Sclerosis – an incurable, unpredictable disease that silently destroys the coating on your nerves like the lightning that had melted the wires of our childhood home. I was twenty-eight years old when the doctor diagnosed me. I had lesions on my brain, numbness in my arms, and cognitive difficulties.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER. The professionals were looking for more answers and guidance on a treatment plan, instead, the hole they poked in my spinal column failed to heal. The cerebral spinal fluid that protects the grey matter inside my head and my spinal column drizzled out into my body causing my brain to bang against the inside of my skull. The test had left my brain completely unprotected. It was a storm I’d never experienced before. I had no clue how to walk through it.

My parents flew out from the Midwest to be with me in the hospital. I was an adult who needed their protection once more.  

When the leak was plugged and I was deemed safe to return home, I sat on my couch and cried into the shoulder of my dad. I was exhausted. Scared. And unable to see a future that wasn’t destroyed by disease. For thirty minutes my dad said nothing as the tears flowed from my eyes. We were in the Buick. Grounded. And I finally felt safe once more.

Cory Martin is determined to weather the storm.

The Second Strike

Lightning never hit our family home again. All the precautions my parents took were for naught. There was no reason to fear, yet the circuit protectors remained. Just in case.

For the next ten years, I had no other choice but to keep moving forward. I was lucky that my symptoms were manageable and that the lesions on my brain remained stable. The storm of MS held the possibility to spin into a tornado, but I learned to live with my own DIY circuit protector. I created a bucket list of sorts and powered through with the attitude of saying yes to every opportunity.

For ten years, I lived believing that I had it all figured out. That because I’d contemplated the future with MS, understood the possible outcomes of the what if and what now and what then questions, that I knew exactly what my future held. I thought I was prepared. I thought I could handle anything.

I thought I was prepared. I thought I could handle anything. Then it hit me. Straight on.

Then it hit me. Straight on. There was unbearable pain in my bones. Inability to exercise. The pain I felt was a marathon. The fatigue made work impossible. My writing became jumbled.

I went to the MS doctor looking for guidance. She ran some tests, but she couldn’t make sense of it. The lesions on my brain hadn’t multiplied—she didn’t think it was MS causing my pain this time. My primary doctor ran tests too, but she didn’t have an answer either. She sent me to a rheumatologist. By this point I couldn’t walk up a flight of three stairs without needing an hour-long nap. Still, he didn’t think I had any of the diseases he normally sees, but to cover his bases he drew some blood. When I returned for results, I went into the appointment expecting to hear that it was a fluke thing – a virus, a lack of vitamins. My body had already been struck once. Surely, it wouldn’t be struck again. But his words said differently.

You have Lupus. Take this drug. See you in two months. BOOM! I was struck once more. Unprepared.

 Every Storm Is Different

Even though I tried to predict what my future held with MS, there was no way to predict a future with Lupus. There was no way to know how it would feel to be told I had another unpredictable, incurable disease.

After living with MS for a decade, I thought I had iron clad armor. A steel chassis to redirect the electric current. I thought I was immune to any more blows to my health. And even if I wasn’t immune, I thought that no matter what happened I would know how to deal. But I was no more prepared for Lupus at thirty-eight than I was at twenty-eight when I was told I had MS.

Every bolt is different. Every electric surge a new voltage.

So now here I am. No rubber tires. No circuit protector. Just me and the symptoms of my new disease. Attempting to adjust and move through it all. But how? That I’m not sure.

Yet I do know this…They say lightning never strikes twice. But it does. In fact, it strikes over and over again. It’s just that the same lightning never hits twice. Every bolt is different. Every electric surge a new voltage. You never get struck by the exact same current, but you are guaranteed to get hit more than once. It is a fact of life I now accept, but that doesn’t mean I can’t keep searching eBay for a 1987 burgundy Buick to hide out in until the storm passes.

Chronic Illness Disability

The Future Of Health Care Tech In Africa

Chronic illness and disability are on the rise in Africa. Luckily, so are clever African entrepreneurs, who are hacking the local health care system in revolutionary ways.

Africa confronts the world’s most dramatic public health crisis. Between countries battling with HIV/AIDS, malaria, high rates of maternal and newborn mortality as well as increasing rates of noncommunicable diseases health systems are straining.

But healthcare tech entrepreneurs are working across the continent to create solutions for the issues their communities face, and often innovative apps or accessible electronic equipment are working to lessen the burdens healthcare providers face, or provide access where it might not be otherwise. While the problems each country face might differ the solutions are innovative, often leapfrogging the stages a developed country’s healthcare might go through.

A couple technicians from Red Bird Health Tech.

The Power of the Pharmacy

In Ghana, West Africa, Andrew Quao and his team have been working on helping to lessen the burden on hospitals and clinics by getting pharmacies to do health monitoring tests.

As it stands, Quao, co-founder of Red Bird Health Tech says people could lose three hours to a full day waiting in a public hospital to be tested for tropical diseases like malaria, or to get their blood pressure, blood sugar or cholesterol checked. The company supports pharmacies in the capital Accra and further along the coast in Takoradi by offering rapid diagnostic tests, staff training and technical support,essentially turning pharmacies into mini-clinics. They can offer tests in five to ten minutes a patient might wait hours for in an overcrowded hospital.

When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing.

“When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing,” Quao says. “You need constant interface with the healthcare system in monitoring them. The hospitals are so burdened and the healthcare system is chocked. People are spending endless productive hours to just get on top of their healthcare.”

Quao and his team hope their growing service will save users time and money and lessen the burden on Ghana’s healthcare system,which he says is “punching above its weight.”

“We have systems that are set up to treat 100 people but they are having to treat 1000. It’s difficult to get some level of quality especially for the public health sector.”

They hope that by offering testing services in pharmacies, people will just go to hospital for more serious issues or treatments, rather than the health monitoring.

Solving The Drug Price Problem

Also working in the pharmacy space is Ghanaian Gregory Rockson—who created mPharma, which gives patients access to prescription drugs at an affordable price. The company has partnered with major pharmaceutical manufacturers, insurance companies, financial institutions and governments to deliver medicines directly into the hands of consumers in a handful of African markets. It connects patients, hospitals and pharmacies to cloud-based software, so doctors know where to get medicines needed.

Rockson says Africa continues to have some of the highest drug prices in the world.

“In Kenya, intermediaries’ margins account for an excessively high 50 percent of a pharma product’s final price, whereas the average in OECD countries varies between 2 to 24 percent of the final price. We built mPharma to create new business models that would enable more patients to have access to the medicines they need at an affordable price.”

“What Africa needs is more physical healthcare infrastructure and human capital.”

So far, mPharma manages a network of over 220 pharmacies and serve 40,000 patients each month and patients pay between 20-30 percent less for their medicines in selected mPharma partner pharmacies.

While Rockson wants to see mPharma become the largest healthcare company and brand in Africa, he says there are a number of challenges within the heath tech landscape in Africa that need to be addressed.

“What Africa needs is more physical healthcare infrastructure and human capital. Once we have this, we can build technology enabled products and services to bring more efficiencies and drive down costs.”

The founders behind Yapili

Is Telemedicine The Answer To Africa’s Mental Health Epidemic?

Mobile phones are ubiquitous in Africa,with an estimated three mobile phones for every four people in sub-Saharan Africa. A report in The Lancet says the widespread of phone and internet connectivity allows for leapfrogging opportunities in Africa by adopting more advanced technologies rather than following slow, classic paths to address health workforce constraints and improve people’s access to quality health services, with innovation as key in developing new services, ways of working and creating technologies to achieve improved health, including training healthcare workers though online courses.

It is through mobile phones that Yapili hopes to link users through the continent with healthcare professionals, near and far without having to step foot in a clinic or hospital.

Co-founder Enya Seguin and market lead Rorisang Mokgwathise are part of a team spread over seven countries working on the service that delivers healthcare and advice to those in eight African countries through an app. Users can connect to local and western health professionals in societies where professional health advice is hard and expensive to get. YAPILI connects users to professionals who can answer questions around pregnancy and family planning, diabetes and hypertension, HIV and sexual health, mental health as well as generic health questions.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on [that].”

Users upload their information into the app, creating a profile and then the reason why they want to speak to a healthcare professional. The app then suggests professionals the user can speak to, trying to match someone in the same country if possible.

The idea was born in Rwanda in 2014 and is now available to more than 1200 users in Kenya, Botswana, Nigeria, Tanzania, Uganda, Rwanda and South Africa, all are English speaking and have relatively high connectivity. Seguin says the most popular services so far are around pre and postnatal advice, as well as mental health.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on it (mental health) because we realized its becoming an epidemic in a lot of African countries,” Mokgwathise said from her base in Botswana.

Closing Down Africa’s Equipment Graveyards

Professor Tania Douglas, a biomedical engineer in South Africa has been researching and speaking about the need for health innovations to be homegrown to fit the local context they are in. Leapfrogging is important for health innovation in Africa, but so is completely new ideas.

“Learning from the solutions that have already been developed elsewhere and adapting them to local needs (i.e. leapfrogging) is a potential shortcut to health innovation. But devising novel solutions to local problems that haven’t yet been addressed elsewhere is also important.”

In 2017 she delivered a TED Talk highlighting an “equipment graveyard” of imported medical equipment from hospitals in Africa which turn out to be unsuitable for local conditions, staff not adequately trained to use or maintain them, or they might not work in the humid and hot environments,or need constant and reliable supply of electricity often lacking across Africa.

In her talk Douglas points to an ultrasound monitor to track the heart rate of unborn babies in the equipment graveyard. These machines are standard in developed countries but developing -not so much. But expensive equipment is not needed for this, and there are plenty of locally-developed solutions that utilise simple technology proving this, integrating engineering with healthcare. The focus needs to be on creating more useful medical devices to help Africans, creating more inventors who know the issues and have homegrown solutions that work for the varied contexts across the diverse continent.

A customer using a Deaftronics hearing aid.

The Future Of Healthcare Tech in Africa

One of the companies Douglas highlighted in her TED Talk was Deaftonics, established in 2015, the company manufactures affordable solar powered hearing aids, made by hearing impaired people for people with a hearing loss.

Founder Tendekayi Katsiga focused on hearing impaired people in developing countries because he found a significant number of lithium battery hearing aids provided by NGO’s and governments to Africans die in their first month. Katsiga developed his solar-powered hearing aid in Botswana and currently is focused on getting them into the ears of children “presenting them with an opportunity to go to school.”

So far, Deaftronics has sold more than 10, 000 units of solar chargers in 40 sub-Saharan countries.

He’s excited about the future of healthcare tech in Africa, believing it will help eradicate diseases and improve overall health outcomes.

“The health tech landscape presents huge opportunities for Africans. It paves ways to make improvements in distribution of medicines using drones in areas which are not accessible. The rapid growth in access to technology, particularly mobile phones and network connectivity in Africa , has created opportunities for health programs, training and data management.”

Chronic Illness Rare Diseases

Chronically Ill? Let Your Voice Be Heard

It's easy to feel powerless after diagnosis, but don't keep quiet about your experience. Ask yourself: what am I doing to create a better tomorrow?

This post is part of a collaboration with Inspire, a healthcare social network with more than one million patients and caregivers.


I was 15 when my parents sat me down at the dinner room table to tell me that my mom had a rare condition known as Huntington’s Disease (HD). I don’t remember much besides being angry and in denial about the situation. Despite the fact that I was told my mother had it, the disease was still, to me, largely an abstract. I didn’t understand the disease, or the impact it may have on my future.

I certainly never seriously thought that I might one day inherit her disease.

HD is a life-shortening neurological disease that slowly deteriorates a person’s physical and cognitive abilities. It is like having ALS, Alzheimer’s, and Parkinson’s all rolled up into one. But while I could see for myself how Huntington’s Disease affected my mother, thanks to her increasingly frequent mood swings, it wasn’t until I went to college that I understood the genetic component of HD affected me as well.

I realized I had a 50/50 chance of inheriting the disease and ending up like my mom. I pondered whether or not to go through genetic testing: was it better to know, or not to know?

Ultimately, I decided I didn’t want to live in the unknown. I was tested my sophomore year in college. When the results came back, the neurologist simply said: “Seth, your genetic test came back positive for Huntington’s Disease.”

When the results came back, the neurologist simply said: “Seth, your genetic test came back positive for Huntington’s Disease.”

But just like when my parents told me about my mother’s diagnosis, I don’t remember much about what he said after. I was numb: all I could focus on was that I was destined to slowly degrade over the years both physically and mentally, until–like my mom–I was so ill that I needed permanent nursing care.

It took me around three years before I realized I couldn’t keep quiet. By not telling people like my sister, I was robbing her of a chance to make her own choice regarding getting tested. I decided that I wanted to use my journey with Huntington’s as a platform, letting other people who, like me, felt isolated by their condition that they weren’t alone. And that platform needed to start with the people closest to me: my family.

I’m not saying it was easy. I was nervous about how my family would react, especially my mother, who I thought might feel guilty. But once telling them the news, I felt like a weight was lifted off my shoulders.

In March 2015, my mom lost her 17-year battle with Huntington’s Disease. She was, and still is, my inspiration. Memories of her contagious smile, sense of humor, and positive outlook have inspired me every day as I, too, fight our disease. Her own bravery in the face of Huntington’s Disease drove me to become more involved in the rare disease community. From doing a talk at TEDxNatick in my hometown of Natick, MA to sharing my HD journey in front of 600+ R&D staff at Sanofi Genzyme, it gave me a better sense of what I wanted to do with my career: to connect those impacted by a rare disease with the proper educational resources and social, emotional support.

You need to ask yourself: What’s your next step to a better tomorrow?

In the face of a debilitating disease like Huntington’s, it’s so easy to feel powerless. But when things get tough, you can’t give up. You need to ask yourself: What’s your next step to a better tomorrow? I’ve learned that you can be an effective advocate in what might seem like modest ways: for example, fundraising, starting a blog, speaking to others about your experience, or becoming involved in your community both socially and politically.

The first step, though, to becoming empowered is to speak up. Let your voice be heard.


Seth Rotberg is a rare disease advocate and motivational speaker who sits on the board of trustees for the Huntington’s Disease Youth Organization. He is partnerships manager at Inspire.

Chronic Illness Disability

Is Marie Kondo and KonMari Compatible With Chronic Illness?

After watching Netflix's new show about the life-changing art of tidying up, I tried it for two weeks to see if it was compatible with my disability. Here's what I learned.

It was another one of those days: a Netflix-and-chill day, in bed, because of a flare-up. My social had been abuzz about Tidying Up With Marie Kondoand my love for reality-TV home makeover shows made me interested. So I decided to binge the first season while I lay in bed.

If you’ve never seen Tidying Up, it’s a show in which Marie Kondo, founder of the KonMari Method, enters people’s home and teaches them to declutter and clean their spaces, using the main criteria that one should only keep objects in their life if they inspire joy.

It’s a nice theory, but as I watched Kondo and the families she was working with energetically clean their spaces, I found myself growing frustrated. None of these people had health conditions. None of these people were disabled.

I looked around my room at the heating pads on the floor and clothes stacked on my dresser, and wondered how I’d ever find the energy to clean in that manner. The KonMari method seemed like yet another system that worked well for able-bodied individuals, but overlooked the unique realities and needs of disabled individuals.

I decided to try the KonMari method myself for two weeks to see what it was like for a disabled person. Here is what I learned.

Lesson One: Don’t Mess With My Bed

The process started off simple enough. Marie Kondo says to start your tidying up process with clothing, and in the show, the first step many of the families take is to take all of their clothes and throw them on the bed to sort. So I pushed open my closet and started tossing everything onto my bed.

Throw all your clothes on your bed to sort. It sounds easy, disability agnostic. But as a person with chronic health issues, I found that as the pile got bigger and bigger, I became increasingly anxious.

The families Kondo worked with on her show seemed to have no issues covering their beds with piles of clothes, but as a disabled person, this is the main place I go to when having a bad day. Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Nearly in tears, I realized that not only did I have to sort through all of this, but I had to do so before I could get to my bed again, which would require a level of energy I wasn’t sure I had.

Marie Kondo suggests starting by finding something you’re certain you want to keep, that sparks such joy that it makes you go ching! when you hold it. That’s your baseline, the feeling you want everything you decide to keep to make you feel. I dug through the pile and grabbed out a pink sweater with a penguin on it, a velvet jumpsuit, and a red and yellow plaid dress – all things that definitely spark joy in me. Soon my ‘yes’ pile was growing with all those pieces of clothing I revert to over and over again, as I tossed into another pile the things I wasn’t so thrilled about.

It was then that I hit a wall, both physically and emotionally. I’d not been at this very long, but I’d reached my body’s max, and without many other options, I curled up amongst my piles of clothes. I realized there was no way I was going to have the energy to do all of the sorting, along with the folding and putting away, on the same day, which is what KonMari suggests.

I needed to come up with a different plan.

Marie Kondo walking by a neatly organized closet.

KonMari asks you to only keep items in your life if they spark joy, but is it compatible with disability?

Lesson Two: It’s Okay To Shift The Rules

For a lot of critics, KonMari comes across as inflexible in its philosophy of austerity. It feels, frankly, like a lot of the pop philosophy du jour: both too strict and too whimsical, somehow, to survive a brush with the reality that life is messy and conflicted.

But as I lay there, I remembered the tender way Kondo worked in Episode 4 with a recent widow, Margie. In the episode, Margie expresses a need for dealing with her deceased husband’s belongings in a different way. Instead of trying to convince her to go against her instincts, Kondo says: “I understand. Let’s shift the rules for you.”

I imagined Kondo seeing me curled on my bed, and decided that she would understand if I shifted the rules. With that I put my clothes that sparked joy in the closet, shoved all the rest of the mountain back haphazardly into my drawers, and decided to come back to my tidying tomorrow, after a much-needed nap.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body. For the rest of my time tidying clothes, I worked on one drawer of clothes at a time. I found that was the most my body could handle in a day, and it helped me to not get so overwhelmed by the process as well. I’d dump out a drawer and sort through, discarding some items and keeping all those that sparked joy.

And it paid off.

I did not anticipate how much pleasure I’d find in folding my clothes into tiny rectangles. I was so excited with the first shirt I folded that I giggled out loud! The process of folding my laundry, which I’ve never much liked before, now brings me great satisfaction and has become a new meditative process for me. By sitting at my kitchen table to fold, I can use Kondo’s method without the pain of bending.

Marie Kondo folding clothes.

I was skeptical at first, but Marie Kondo’s emphasis on clothes-folding really did make me happy.

Lesson 3: Your Things Aren’t Who You Are

KonMari’s emphasis on mindfully going through your possessions, object by object, really makes you think not only about what you want to keep, but why. As I worked through the process, I realized I had kept many things around for reasons besides usefulness or joy, even if I’d convinced myself otherwise.

For example, nostalgia, as if that pair of shoes could transport me back to a different time before my spine had begun fusing itself together. I’d also kept many things from a scarcity mentality, fearing that if I got rid of them, I might not have them at some unexpected time in the future when I needed them, but wouldn’t be able to afford to replace them. And some objects I held onto, not because they sparked joy, but because I felt they were somehow connected to an identity I feared I had left behind in my illness, such as the books I’d used to write my thesis. If I let them go, was I also letting go of my identity as an able-bodied person?

Marie Kondo is right: things are not what make us who we are.

But Marie Kondo is right: things are not what make us who we are. I can appreciate the time I was in school and know the hard work and effort I put into my academics without having the books taking up my physical space. I can recall the joy and confidence of walking in the heels my body no longer can handle wearing without them housing dust bunnies in my closet. I can remember my past without living in it.

Conclusion

During the two weeks I followed the KonMari method, I was able to tidy my clothes and my books. However, I was only able to do this with pretty significant modifications that allowed me to break the tasks into much smaller pieces.

Is KonMari out of touch with the needs of the chronically ill and disabled? Yes and no. I was skeptical at first, but the philosophy of KonMari is one anyone can practice, even if they have to change the rules to accommodate their unique challenges. At the same time, I think Marie Kondo might underestimate the size of the mountain that people with chronic illness have to climb when following her method.

For me, the process of putting everything in one central location and physically touching each item before deciding if I keep it or not just didn’t turn out to be feasible. It’s a lot to ask even an able-bodied person to go through literally everything they own to appraise its value in their life, but for someone with a chronic illness, the energy required multiples tenfold.

Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is.

And that brings up another question. Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is. While I was able to sustain Marie Kondo’s methods for a few weeks, long-term, I think I’ll revert to my organizational ways, because while they might not be as aesthetically pretty, they prioritize energy conservation and pain management… things that are infinitely more important to me as a disabled person.

Several days ago the KonMari.Co Instagram posted a photo with the caption: “The space in which we live should be for the person we are becoming now, not for the person we were in the past.” Instead of my space being crammed with reminders of my past life, it’s important to fill it instead with things that reflect the person I am now and want to become. And maybe the method I use to get there doesn’t really matter.

Chronic Illness

Raising Your Kids With A Giving Heart, Despite Chronic Illness

After struggling through her son Ashton's kidney disease and her own health challenges, it's more important than ever for Amanda Zari to raise her kids with a giving heart.

When Ashton Zari was only four, he started asking for his birthday to be turned into a fundraiser, now called Ashton’s Birthday Wish, for the Ronald McDonald House of Central Ohio. In the last four years, Ashthon has raised over $40,000 in donations, organized face painting parties for the other kids at the home, volunteered his family to make dinner for the other residents, started a bathing suit closet for kids who didn’t know to pack one for the splash pad, met the President, and has written and illustrated a children’s book called How I Became a Superhero.

Ashton’s passion for helping families and other children at the Ronald McDonald House is inspired by his own experiences. Ashton was born with Bilateral Urinary Reflux, which means urine flows backwards from the bladder into the kidneys causing urinary tract infections and, when left untreated, kidney damage. Because Ashton was almost three years old before doctors realized what was going on, he now has Chronic Kidney Disease and Idiopathic Constipation. In the last 5 years, he and his family have spent close to 300 nights at the Ronald McDonald House of Central Ohio while receiving treatment at Nationwide Children’s Hospital.

Friends and family often joke that keeping up with Ashton’s fundraisers and service project ideas can be a full-time job for his mother, Amanda Zari. But Amanda, who also has two younger children, insists she is always willing to support Ashton’s wild ideas because she knows helping others is how he stays motivated. She explains that Ashton, a child with chronic pain and illness, needs those moments as often as possible.

Ashton Zari, and his mom, Amanda.

Amanda will be the first to tell you, though, that she hasn’t always been so willing. While today she considers it part of her life’s purpose to help other families on similar journeys, her motivation is fueled by memories of how dark her life was when their family first got the news of his illness.

Folks recently chatted with Amanda Zari about how her family navigates this difficult path and what inspired them to focus their energy on helping others. Our conversation has been edited for clarity and brevity.

You didn’t find out Ashton was in kidney failure until he was almost three, but there were signs all along that something was wrong. What led up to his diagnosis?

As a baby and toddler, Ashton cried all the time. He would get these random fevers and my husband, Anthony, and I would take him to the doctor, but they kept telling us he just had an ear infection or probably just a virus.

When I was 16 weeks pregnant with Addison, our second child, Ashton had been sick for almost three weeks. I took him to the pediatrician three times, and each time I was told it was just a virus. Eventually the fever spiked to 104.9, and I decided to take him to Urgent Care.

The doctor came in the room and I just started sobbing. “I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

“I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

They had him pee in a cup, they ran labs, they did x-rays of his urinary tract, and they did a renal ultrasound. Finally the doctor came back in and told me, “Amanda, your little boy is very sick. He is in kidney failure.”

Within two weeks, we were meeting with doctors at Nationwide Children’s Hospital in Ohio. His first surgery was when I was 36 weeks pregnant. No one wanted me to travel because they were afraid I would go into labor, but I had to be there. A week after we got home, I had Addison.

But then you had your own health scare which led you into a pretty dark place. What happened?

I did not take care of myself during my pregnancy. I pretty much sat around and cried, feeling bad for myself because my little boy was sick and might die. I wasn’t exercising, and I wasn’t sleeping. I was going to work and crushing it, but when I came home there was nothing left.

Addison was born, and she was perfect, but everything in my life was so out of control that I became determined I was going to breastfeed her —because this was something I could control. I already hadn’t been sleeping, but now I was setting my alarm for every two hours to nurse her. When she was just four weeks old, I found out I had to return to work or we would lose our family’s health insurance – it wasn’t a choice.

The doctors discovered I have a disorder called Addison’s Disease, just weeks after my daughter Addison was born.

I was only back at school teaching for a week when I started having seizures that led to me spending eight days in a medically induced coma. The doctors discovered I have a disorder called Addison’s Disease, and I am telling you that God is up there laughing because I’m diagnosed with Addison’s Disease just weeks after Addison was born. Essentially, what it means is that my body doesn’t produce enough cortisol. So when I was putting my body under all that stress, it didn’t have what it needed to deal with it, so it shut down.

When I woke up, I didn’t recognize my husband or know who my children were. I didn’t even know I lived in West Virginia. All of my muscles had atrophied, and I had to relearn everything – how to walk, tie my shoes, and feed myself.

It took about six weeks for my memory to come back, and I had to move back in with my mom because I needed full time care. It was demoralizing. She was having to take care of both me and my children, and that’s not at all who I am. I was angry, and no fun to be around. I wasn’t the person I am today or the person I was in college. I was a bitter, sour version of myself.

A woman holds her newborn baby while crying immediately after birth.

Amanda with her daughter, Addison, after her birth.

How did you get through that time?

On January 1st, 2015, about nine months after my seizures, my very sweet friend came to me and said, “I’m tired of you sitting here… You are not showing up for your family. This is not you.”

She started dragging me, three times a week, to the gym. I went begrudgingly, at first, but eventually that is where I began to find myself again.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker.

In the beginning, I felt like I was going to stay at the bottom of that ditch forever, but I found a community of people who loved me when I was unlovable and they helped me see things could get better. After a year, I stopped focusing on being sour and decided to focus on positivity so that when we got devastating news again, instead of going back into the ditch, we could acknowledge it sucks and start asking what we can do for other people.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker. There’s not a whole lot of in between. You’re either going to be the person that sits on the bottom or you’re going to be the person who comes out fighting, even if it’s begrudgingly, so you can help other people fight it out too.

Amanda credits her work in the gym as giving her the strength to get through her own health and mental health challenges.

In what ways are you and Ashton using your unique situation to encourage others?

Inspired by everyone who had helped me at the gym, I decided to use all of that time sitting in the hospital with Ashton to get my personal training certification. I started making training plans for the other moms  that can be done from the hospital bedside, and leading exercise classes and healthy lifestyle challenges.

Ashton and I sort of fed off of each other because we were both going through a really hard time, and we will often joke that the Phoenix is our spirit animal because we sort of came out of the ashes at the same time, asking, “What can we do?”

“How can we serve the families that are going through the same things we are?”

I was making Facebook videos about body image and self love. Ashton began to take notice of this and realized, “If you can encourage people, so can I.” So he started making his own “How To Be Happy” videos.

Ashton’s Birthday Wish was eventually born out of that idea. We started it, with his fourth birthday, as a way to give back financially to the Ronald McDonald House, but it has made an evolution over the last four years. We’ve become very service based and we’re constantly asking, “How can we serve the families that are going through the same things we are?”

Amanda and her kids.

Ashton has done some pretty amazing things, but I am sure a lot of the work of implementing his ideas falls onto your shoulders. Do you ever say no to his ideas?

No, I don’t. There is no way to describe his life other than it is hell, but his cup is filled by serving people at the Ronald McDonald House — whether it is through raising money, putting out an inspirational video, writing cards to other kids, or writing a book.

My son inspires me all the time because he dreams big, and he very rarely falls short.

His cup is filled by that. So my job, as a parent, is to help him. I am so proud of him but I can’t take any credit for any of his ideas. He inspires me all the time because he dreams big, and he very rarely falls short. I have never met a child with his work ethic.

How have you reconciled the dreams you had for your family with the life you have been given?

This is a daily battle for me. I always knew I wanted to have kids, and I always knew I wanted to teach. Everything in my life was building up to that. I was going to get married, teach, and have children. I had my whole life planned out. When we found out Ashton was sick, and how sick he really was, that was one of the most soul crushing times for me because I realized my life was not going to look like what I had always imagined.

I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

There are still days that I look on social media and see my friends’ kids playing tee ball or going to school events. The jealousy still flares every once in a while, but what I have found is that there is so much beauty in day to day life. Sometimes it takes another second for us to sit down and look for it, but I can tell you that I appreciate the little special moments so much more than I would if I had the dream life that I expected. I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

The Zaris at Ronald McDonald House at Halloween.

When all of this is said and done, what lessons or memories do you hope your children come away from this with?

I hope that they come out of this with a sense of resiliency. We do our best to have a routine and plan. Sometimes, though, we just have to roll with the punches and make the best of it. But we do that by having dance parties while we cook pancakes, singing really loud in the van when we’re driving, and cherishing every moment we get at home because we’re on the road so much.

I also hope they always keep the servant heart they grew up with, seeing us giving when we have so little. I hope they continue to constantly try to bless other people because anything that we’ve done for other people, God has blessed us back with five or six times. I hope they come out with just a sense of no matter how hard your life is, there are things you can do for other people.

To learn more about Ashton’s Birthday Wish, visit AshtonsBirthdayWish.org