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.

Acute Illness Q&As Rare Diseases

Sepsis, Rocky Mountain Spotted Fever, And Me

Jennifer Hohman thought she was bitten by a flea. It was a tick. Next thing she knew, she was fighting for her life.

Last summer, Jennifer Hohman couldn’t shake a fever of 103. A red rash popped up on her arm and stomach. She was clammy, weak and pale. Days later, her blood pressure fell to 60/30 and medics rushed her to the intensive care unit of her local hospital in Houston, Texas. Her liver and kidney were shutting down. She was put on life support.

She had developed sepsis, a condition where the immune system mistakenly attacks organs as it tries to fight off an infection. But, doctors wouldn’t discover the real reason behind her symptoms until days and dozens of tests into her frightening hospital stay: Rocky Mountain Spotted Fever.

It’s the deadliest tickborne disease in the world, and untreated has a death rate of over 80 percent. In addition to high fever and chills, it can cause confusion and other neurological changes. The diagnosis came as a shock to Hohman, who lives in a somewhat rural area outside the city, but hadn’t been hiking or camping in the woods. She credits her husband with saving her life. It was Kip who remembered Hohman had been bitten by a flea two weeks prior, and he made sure her doctor knew. Desperate to keep her alive, Hohman’s doctor started treating her for flea-borne spotted fever. Luckily, the same medication is used to treat Rocky Mountain Spotted Fever.

Doctors finally correctly diagnosed Hohman, and now, she’s back to her old self. She believes she’s still alive in part to continue the crucial work she does in helping human trafficking survivors; Houston leads the nation in cases. Hohman created Houston Area Against Trafficking, a network of nonprofit organizations, and the Houston 20, a group of influential Houstonians, to raise money to support survivors. Less than a year after surviving Rocky Mountain Spotted Fever, she was in the White House as President Trump signed H.R. 1865 into law, which combats online sex trafficking.

You nearly died from Rocky Mountain Spotted Fever. Can you tell us what it was like when you first got sick?

I started to feel clammy and feverish. It was July 3 and I had a party next day and I wanted to drink. So, I figured I should go to the doctor. I had a fever of 102. My GP tested me for strep and the flu and they were both negative. He said it was probably a virus, take Tylenol, stay hydrated and call if you’re not better.

I remember saying things I didn’t understand. It was like I’d turned into the woman from The Exorcist.

A few days passed and my temperature was at 103. I went back to my doctor and he gave me fluids and antibiotics. The fever wouldn’t go away, so a few days later he sent me to the ER. I was feeling like hell. I was drab, miserable. They did a cat scan, took blood and said, we can’t find anything. They sent me home with another antibiotic and the number for an infectious disease specialist.

A couple of days later, I started losing my lucidity. I was talking really loud, and I remember saying things I didn’t understand. It was like I’d turned into the woman from The Exorcist.

How was it in the hospital when no one had any idea what was wrong with you?

I was fighting with the nurses. They had to strap my hands down to the bed. I broke a restraint. I’m cussing a nurse out, but at same time I’m thinking, she’s so nice and beautiful. No one really knew what was going on at that point. They asked if I’d taken drugs. I kept asking them, what are you doing to me?

They gave me sedatives to calm me down so they could start doing tests. They put electrodes on my head in case I had a seizure or heart attack, and a port in my neck so any medicine could go right to my heart. They also did a spinal tap. One morning, they called Kip and said I was having trouble breathing, and they wanted to incubate me. He gave permission over the phone to put me on life support. I was in a sedated coma. They told him, you need to get your family here. Whoever wants to see her, come see her now. My organs were failing, I was dying.

Hohman, her dogs, and her family.

What was it like when you woke up and started improving?

I woke up still tied to a bed. I was able to have thoughts at that point and I recognize people, but I was still so confused. They didn’t know what it was until day five. The infectious disease doctor said, it’s not from a flea, it’s from a tick. I’d never seen them around our house, on our dogs. I have no idea when I was a bitten by a tick. It was a miracle Kip thought to mention I’d been bitten by a flea a few weeks before. The doctor actually listened and they started treatment for flea-borne spotted fever. Had he not listened, and waited until all of the lab results came back, I could have been dead. They never found a tick bite on me.

They never found a tick bite on me… Had he not listened, and waited until all of the lab results came back, I could have been dead.

How was your recovery?

My doctor told me I could lose my fingers and toes because of septic shock. I was having these conversations with God—what more do you want me to do with my life? I had to do physical therapy to be able to walk. I went home with a walker. And, for a while I was losing my hair. The doctors said it was all the medicine and the bacteria dying off.

For first couple months I slept all day long. For two to three months I had high blood pressure, and I lost 30 pounds. But, I also had tons of love and friends and family taking care of me. People came over every day. I had the three F’s: friends, flowers and food. Almost every day one of the F’s showed up, if not all of them. I lost five months of my life, but now it’s as if nothing ever happened.

It taught me not to be afraid of dying. If I go I go.

How did this experience change you?

It taught me not to be afraid of dying. If I go I go. I’ve skipped death a couple times. When I was 9, I survived a brain stem tumor. My family knows I love them. My friends know I like to enjoy life. If I lived my life right, they’re all going to have good memories of me. It also really drove home that what matters in hospitals is how doctors listen to their patients and families. If you don’t listen, it can be a matter of life and death.

Essays Rare Diseases

How I Diagnosed Myself Reading ‘Alice In Wonderland’

After years of being ignored by doctors, reading Lewis Carroll led to me finally putting a name to what was 'wrong' with me.

I always assumed that everyone experienced sensations where their limbs would feel like they were growing or shrinking. That sometimes, when they were trying to sleep, their skull would feel like it was diminishing in size, as mine often does, and becoming a distant dot within their own head.

When I found out that most people did not feel this way, I’d still casually tell workmates that my skeleton felt too large for my own skin that day, hoping they could relate or understand. But they didn’t. Nor did the scores of doctors who I told about my symptoms over the years. I got used to their blank, bemused stares, their well-intentioned reassurances that it was all probably nothing to worry about – even if nobody seemed to have the slightest idea how to explain it.

I’ve been suffering from what I now know is commonly called Alice in Wonderland syndrome (also known as Todd’s syndrome or dysmetropsia) since I was about nine years old. But I only recently fell down a rabbit hole and found out that’s what I had. As it turns out, finding a diagnosis was as simple as looking at my favorite childhood book.

Drink Me

Written in 1865 by Lewis Carroll, Alice in Wonderland tells the tale of a young girl who falls down a rabbit hole into a logic-defying fantasy world. Throughout it, young Alice is puzzled by the peculiar nature of the new world she finds herself in: in particular, the way her body appears to grow and shrink in size while she traverses through Wonderland. And according to a 2016 clinical and pathophysiological review of the syndrome, the he sensations Alice feels when her body changes size match almost exactly the somatic delusions known as a Macrosomatognosia (in which a person experiences their body as larger than it is) and Microsomatognosia (in which a person experiences their body as smaller than it is).

Amy Roberts today.

As a child, I could relate to Alice’s sense of disorientation after sipping from a bottle marked ‘Drink Me’ and “opening out like the largest telescope that ever was.” I remember one of my first and most terrifying experiences on my way home from a friend’s birthday party. Sitting in the backseat of my dad’s car, I suddenly felt as though my torso was becoming microscopic—a fleshy crumb on the backseat—while my arms appeared to be doubling in length. I sat silent with horror as I struggled to comprehend the sensations I was feeling. Even my lungs felt like they were shrinking. The sensation didn’t subsist for hours: at home, I lay in a bed that felt like it was three times the size it should be, sobbing with dread as my circuits overloaded with dysmorphic sensation.

Curious and Curiouser

Feeling like you’re growing or shrinking or both at the same time isn’t an easy experience to put into words, and at nine years old it was even more difficult. Perhaps Alice puts it best in her conversation with the Caterpillar: “I’m afraid I can’t put it more clearly for I can’t understand it myself to begin with … being so many different sizes in a day is very confusing.”

Like Alice, I have felt isolated through much of my life by my inability to articulate what I am feeling.

Like Alice, I have felt isolated through much of my life by my inability to articulate what I am feeling. After an especially terrifying bout of the syndrome as a young teenager, I remember one doctor laughing in my face after I told him my brain felt as though it was shrinking so severely that I was “disappearing”. His diagnosis? Teenage melodramatics.

Of course, getting an official diagnosis for a condition presumes that it is medically recognized in the first place, which Alice in Wonderland syndrome still isn’t. So I suppose it’s no surprise it took until my twenties to discover that I wasn’t alone in experiencing these sensations, while researching Lewis Carroll’s life and work. It turns out that many people believe the author suffered from the condition and that the symptoms served as a source of inspiration for his classic children’s story.

Auras of Alice

Like me, Carroll was a migraine suffferer, whose auras (“that odd optical affection of seeing moving fortifications, followed by a headache”) may have triggered the condition that was later named after his most famous story. Certainly, in my case, the onset of my Alice in Wonderland syndrome seems to be triggered by migraines, as well as times of great stress and anxiety.

The self-perpetuating feedback loops I experienced as a child between stress, anxiety, pain, and dysmorphia could last days. This was no Wonderland.

The self-perpetuating feedback loops I experienced as a child between stress, anxiety, pain, and dysmorphia could last days. This was no Wonderland. The syndrome would cause stress, the stress would worsen my migraine, and the migraine would cause me to panic that I was getting too big for my bed, or shrinking down so small my mother would never be able to find me again. But once I learned about Alice in Wonderland syndrome as an adult, I discovered I no longer found my symptoms so terrifying. Instead of being afraid to grow or shrink, I became excited to experience it again. Stripped of the terror of not knowing what was happening to me, my syndrome became strange and beguiling, haunting and dreamlike.

Amy posing beneath a topical amuseument park ride as a little girl.

The Importance Of A Name

Putting a name to what was ‘wrong’ with me is probably the singular most important discovery I’ve ever made my own health. Giving my syndrome a name gave it legitimacy. It gave me the tools and the vocabulary with which to understand, explain, and enjoy my dysmetropsia. Most importantly, it gave me a word to search for, which made me realize I wasn’t alone. The sensations I experienced of growing or shrinking didn’t make me a delusional freak; instead, I was delighted to discover an entire community of people who experienced the same thing, including artists such as Käthe Kollwitz, Pablo Picasso, and Giorgio De Chirico.

Putting a name to what was ‘wrong’ with me is probably the singular most important discovery I’ve ever made my own health.

I’m currently enduring an intensely stressful period of my life in which I’m experiencing migraines often. And as I’m typing these words my arms feel like they’re extending to ludicrous proportions and my fingers feel broad and heavy, like tiny hammers slamming into keys. I feel light but humongous, my sense-of-self shrinking away as my body expands, but I’m not afraid. I feel happy and healthy. By putting a name to the affliction I’ve always had, I’ve been able to accept it.

I’ve never ‘grown out of’ my syndrome as doctors once reassured me I would, but I’ve certainly managed to grow with it. By discovering what I have,  I’ve learned that the mind is an elusive, curious place. It can be daunting and hideous, but it can also be winsome and enthralling. A wonderland, if you will.

Chronic Illness Chronic Pain Essays Rare Diseases

How Chronic Illness Slowed Me Down For The Better

Maybe being happy is more important than how productive you are.

I’ve worked hard my whole life. I’m the kind of person who can’t even fathom taking a break until the day’s work is done… and when it is, I’m still looking for another project to better myself. No one had ever accused me of being lazy before.

Yet the moment I got sick—as soon as I needed a break and have people take care of me for a change–it seemed like everyone came out of the woodwork to insinuate that the real problem was my laziness.

Too Busy To Slow Down

I was first diagnosed with rheumatoid arthritis at 26, after a busy holiday season in which I’d planned an office party for 200 people and published my first book. As my company’s sole event planner, digital marketer, receptionist-slash-office manager, and community action coordinator, it was my job to make sure everyone else was happy, even at my own expense.

Despite enjoying the work and gaining valuable experience, it was often more stressful than the construction management job I’d just left, and the initiatives I’d worked so hard on did little to boost employee morale. I wasn’t in a position to create real change despite expectations and it left me discouraged, but I needed this job. I had rent to pay, and I’d found so many flaws with my previous jobs that my resume had lost focus.

I was exhausted, and I thought that was normal. My boyfriend suggested I see a doctor, but I brushed it off: I didn’t have time to see a doctor.

An Unexpected Diagnosis

But it was inefficiency that eventually caused me to cave. Trying to wrap a small pile of Christmas presents, I could barely do it because of a recurring pain in my hand. For two weeks I brushed it off, letting the pain grow until I kept dropping things, and even grabbing an object the wrong way had me shouting in agony. So, I used some personal time at work, convinced I was wasting it, and went to the doctor.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms.

I’ll never forget the pained look on my doctor’s face as we ran through my symptoms. He discovered swelling in areas I hadn’t even had pain in yet. A week later, after a day of feeling like I had shards of glass in my wrists making it impossible to even hold a door open for someone, I got the call: my bloodwork showed that I most likely had rheumatoid arthritis.

I knew what rheumatoid arthritis was. I suffered from Raynaud’s Phenomenon as a teenager, when it was explained to me that with my family’s history of lupus, rheumatoid arthritis might be a further risk. I knew the disease for causing debilitation, reducing lifespans, and forcing early retirement. Meanwhile, I defined myself by keeping busy. What did this mean for my career, my home life, and my dreams to travel, which I hadn’t even started? Because of my pursuit of a stable career, I had barely left my home state of Massachusetts.

No Sympathy From Work

Within months of my initial diagnosis, I’d spent thousands of dollars and used up nearly all of my personal time. While my manager and HR knew vague details about what I was going through, I fielded jokes from others who did not. “Taking a half day to play hookey?” staff joked, not knowing how many vials of blood I was about to get drawn, or the way dozens of miles of driving fatigued me. Comments were made when I stopped washing other employees’ dishes because I now had problems holding glasses. Multitasking left me winded, and people raised their eyebrows when I spent less time glued to my desk and more time stretching. Was I imagining dirty looks because I took so many half-days? I wasn’t. Coverage for my job became a serious issue, in part because there wasn’t even a plan in place for when I took a routine vacation. I snapped when someone told me that my absence was truly felt. What about what I felt?

Was I imagining dirty looks because I took so many half-days? I wasn’t.

The solution seemed to be to transfer to another department so I could work from home. However, I continued working both the new and the old position for months, giving both my all. Despite doctor’s orders not to overexert, I still did work that landed me on my couch for days afterwards. When it was suggested that I not be paid for helping my company pull off an event I endured physical pain to produce, it confirmed what I already knew: a corporate job like mine wasn’t going to work for me anymore.

Finding Support Online

A pretty young woman smiling into the camera with her dark hair parted down the middle.

Ashley Dufault.

I desperately needed relationships with people who understood that I wasn’t lazy, so during this time, I grew close to the rheumatoid arthritis community on Twitter. There, I met people like me who had had to adapt because of rheumatoid arthritis by leaving their careers, working part-time, becoming freelancers: each was someone, like me, who had been whipped into a vortex by rheumatoid arthritis, and had been forced to question their values. One woman admitted to me that she’d downsized her house and sold her business to create a lifestyle she could be happier with.

“And the fatigue? It never really goes away,” one Twitter poster told me bluntly.

I fought hard against my fate. I tried aromatherapy, exercise, long walks: anything that might help keep my symptoms at bay, and give me my old momentum back. But nothing worked, and on my long evening walks, I would mourn the me that used to be, and all the problems in my personal and professional life that rheumatoid arthritis had caused.

Then, one day, I didn’t care as much. My values shifted.

Being Happy Is More Important Than Productivity

Maybe it wasn’t so important to constantly be achieving. Maybe what was important was to accept yourself and live the life you’ve been given to the fullest. Maybe being busy is less important than being happy. And maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.

Rheumatoid arthritis forced me to put the brakes on “efficiency” and slow down long enough to chase my dreams, not just my next task. So instead of continuing to work a job that was pushing me to my limits, I decided to believe in myself and pursue one of my dreams: my own writing and editing business. I now have clients who appreciate what I do, and I’ve even finished the first draft of my second book.

Most exciting of all? The woman who was too busy to leave New England is finally going to follow her dreams and do some travel. I have a vacation scheduled to visit a different region of the U.S. this year. It’ll be my first time on a plane, and next year I hope to visit my first foreign country.

Creative Commons photo by Jerald Jackson.

Chronic Pain Essays Rare Diseases

In Defense Of Oversharing

When you live with a chronic condition, getting comfortable with vulnerability may be your greatest strength.

When a beloved pet, like a cat, gets sick, it hides under the bed and refuses to be touched.

It’s the same for people. When we’re diagnosed, there’s an instinct to turn inward.

When I suddenly began experiencing pain as the result of a rare spine defect, that was what I did: I turned inward.

I was completely bewildered by the abruptness and severity of the symptoms. It felt surreal: in one moment, I was going for runs along the Charles River and picking out the right blazer for speaking engagements. In the next, it hurt to walk a block or brush my hair.

How could things have gone so terribly wrong?

Keeping My Chronic Pain Secret

I desperately wanted the pain to be abnormal, and so I treated it accordingly—like an unwelcome houseguest that might leave if I ignored it. To acknowledge that my health problem was real or was serious, whether to myself or someone else, felt like a betrayal.

It’s hard to talk about a hurricane when you’re in the middle of it; I was busy battening the hatches and trying to survive. If asked how I was doing, I couldn’t spit out the simplest, most cursory of truths—“I have a back problem”—without wanting to sob. It was too real, too raw.

So I avoided telling anyone about the extent of my health issues and how much I was struggling, unless it was completely unavoidable. Think: my boss, my boyfriend, my roommates.

The Hard Price Of Privacy

The result of my secrecy? My pride and privacy remained intact, even through chronic illness, but inside, I felt just so utterly alone.  As months passed and my normal life—working full-time, exercising, volunteering, social plans—became nearly impossible, it became harder to pretend things were OK.

Once the one year anniversary of my symptoms’ arrival came and went, I realized the pain was here to stay, and that I didn’t have much choice but to open up.

For one, I needed people to know what was me and what was my health condition. If I flaked out on weekend plans, it wasn’t because I was unreliable: it was because I was having a bad pain day. If I needed help lifting a bag, it wasn’t because I was a diva: it was because my shoulder muscles were being uncooperative jerks.

I discovered I needed the support of the people I’d been keeping out of the loop. My friends and family members aren’t mind-readers: I realized that if I didn’t open up and tell them what was happening, I was shutting them off from truly understanding me, and therefore, helping me.

I also became indignant. When I became sick, I was the healthiest and strongest I’d ever been, and since, had done everything I humanly could to cure myself. In short, I’d done nothing wrong. My birth defect wasn’t my fault, so why should I live in shame because of it?

Sharing about my chronic pain was an act of rebellion and defiance.

A beautiful girl in an aqua tank top with brown hair and glittery earings smiles and looks up.

Emily Lemiska. Photo: Ars Magna Photography.

Opening Up Online

So I began to talk about what I was going through.

It started with Facebook posts and duck-face selfies in hospital gowns. Life is a mixture of ups-and-downs, so I was careful to share both my hardships (like getting frustrated with an insurance coverage denial), and the triumph (like figuring out some yoga poses that didn’t hurt). Eventually, I started my own blog and began submitting the occasional story about my experiences to small news sites.

Turns out, oversharing is amazing.

When I was honest and candid about my new reality, people rallied around me. If I posted about having a particularly rough patch, they knew to call and check in. When I explained the mechanics of the defects in my neck and how it affects my body, people began to understand and anticipate my limits without me having to remind them what I could and couldn’t do.

I also finally felt seen. Every human being wants to be understood and validated. We want to feel connected. I needed people to recognize the full picture. Yes, I am still the girl who laughs too hard at terrible puns, who puts her whole heart into her work, who is obsessed with her cat.  But I’m also the girl who lives with a disabling health problem, who has had to become braver than she ever wanted to be. I needed to share the full picture of me: the good things and the hard things.

Giving My Pain A Point

But the most wonderful thing of all about oversharing? It helped people.

I started getting comments about the stories I wrote, emails from strangers. “To read about other people sharing their stories makes something good happen in me,” said one person. “Everything that was written sounded like my EXACT story, feelings, and words. It’s not often someone knows exactly what you are going through,” wrote another.

In sharing, my pain had a point.

I’d also hear from friends and acquaintances who were going through something similar or knew someone who was—people I had no idea could relate to my experiences—and wanted to talk.

This ability to helping others feel less isolated, in whatever small way, began to make oversharing feel not just like a choice, but a responsibility.

In sharing, my pain had a point.

How To Share

Of course, there is a right and wrong way to approach sharing. You need to pick the right time, place, and person. It’s easy to alienate and overwhelm people with details about chronic illness, so instead of revealing your entire life story in one breath, share a tiny bit of vulnerable information at first. Let them ask follow-up questions or wait until they open up with you about themselves; that way can reasonably assume they’re interested in hearing a bit more.

It’s also important to consider why you’re sharing personal details. Are you doing it because you just want to be honest, or is it because you want to vent or get sympathy? When you’re opening up, make sure you’re doing it without a particular agenda. The only good reason to share is the simple desire to be authentic.

As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.

Once you figure out the best approach, give it a try. It doesn’t have to be about your health—it could be anything. What is the thing that makes you feel different or alone? What is the thing that makes you feel passionate or excited? What is the thing that makes you feel vulnerable or scared?

Talk about it! Maybe even… overshare about it. As folks with chronic health issues know better than most, life is just too short, and too precious, for small talk.


Even though Emily had to leave full-time work because of her health, she now works part-time as Director of Communications for the U.S. Pain Foundation, an organization that believes in the power of patients telling their stories as a way to advocate for change. To learn more about the U.S. Pain Foundation or view its INvisible Project magazine, which highlights the stories of people with pain, click here.

Top photo credit to Michelle Gardella Photography.

Essays Rare Diseases

Rocking The Boat

Even though my Mal de Debarquement Syndrome makes me seasick even on dry land, I took a multiday boat ride with my husband, and lived to tell the tale.

I was terrified of the boat–a 57-foot-long narrowboat that topped out at four miles per hour. Admittedly, it was hardly the stuff of wild adventure travel.

But I have Mal de Debarquement Syndrome (MdDS), a rare neurological issue that causes the sufferer to feel like they’re constantly floating, bouncing or walking on a trampoline. In most cases, it’s initiated by a cruise or some sort of travel. In other circumstances—like mine– the symptoms can come on spontaneously. Depending upon the severity, it can range from prohibitive to life-altering and disabling.

There’s no cure or remedy for it and patients are often told they just need to learn to live with the feeling of continual motion. The diagnosis can take a toll on your mental well-being, so support groups are key. The online group I belong to is a safe place where we share research, coping strategies, successes and struggles. The companionship is essential to us, as only we can understand the frustration, anxiety, and hopelessness that comes from having this baffling syndrome.

We’re constantly questioning different theories and treatments, but the one thing most of us agree upon is that we avoid all possible triggers. These include carnival rides, zip lining, big box stores with fluorescent lights and, most of all, boats. So how was it that I was about to spend a week living aboard one?

A view of me in the 57-foot-boat we took down the English canals.

All Hands On Deck

This past December, my husband turned 50 and there was just one thing he really wanted to do: a narrowboat trip on the Oxford Canal in England. Throughout England, there’s a vast canal network brought to life with long, skinny boats. Some people live on the canals year ‘round. Others rent them for a day or a week. Gliding down the canal at little more than walking pace, you hop on and off, using a windlass to open the locks and bridges.  You moor wherever you think you’d like to be for the night, and at night, a walk into town culminates in a meal and a pint at the local pub. In theory, this sounded like an amazing, fun adventure. But in my reality, I was terrified.

Not wanting to deny my husband the experience, I formulated a plan for the trip. First, we invited my 29-year-old niece along to help out with the crewing duties. She, along with my 12-year-old son, would take on the bulk of the physical work required to manage the boat. Second, we agreed that, if needed, I could disembark at any time and stay in a hotel without any sort of guilt trip or persuasion.

My niece’s help during the trip was invaluable.

Keeping Quiet

As most anyone with a chronic ailment will tell you, however, we learn to hide it. In the case of Mal de Debarquement, the same reactions can be tiresome:

“Oh, I had that once. I did some exercises and it went away.”

“You still have that? Maybe you should go to a shrink.”

And everyone’s favorite: “Well, at least it’s not cancer.”

Let’s face it: no one wants to hear about how bad you feel. So we learn to keep things to ourselves.

It might have been difficult, but this kind of view is a once-in-a-lifetime experience.

On the first day of the trip, when I stood on the side of the canal at a lock, I desperately tried to understand the mechanisms of what was happening. My niece and son grasped the concept right away and they knew when to crank the paddles and when to open the gates. But with Mal de Debarquement, brain fog is a serious issue. With the world constantly in motion around you, your brain never shuts off and exhaustion and molasses brain quickly set in. I couldn’t grasp the concept of working the locks and it felt as if all cognitive function had completely shut off. It was frustrating and embarrassing and I hid in the bathroom to cry it out.

Fortunately, I’ve learned that sleep is good way to reset my brain when it’s overloaded. The next day, after a good night’s rest, I was able to explain that I was having some issues. The crew took over and I helped when I could. My husband got really good at steering the boat as close to the towpath as possible so I could hold on while getting off. And because there are no waves in the canal, the rocking of the boat at night was minimal. Yes, we all felt our sea legs when we visited the pubs at night, but it, fortunately, didn’t worsen my situation. At the locks, I had my niece explain what was going on—where the water needed to be and what the next steps were.

Besides the boat, I attempted a lot on the trip that normally I would avoid: the open-top bus tour, walking up to ten miles a day, wandering through museums with tall ceilings, jamming into the Tube during Rush Hour. Each little thing was, for me, a small victory. And when it comes to chronic illness, the small victories are everything.

Disability Q&As Rare Diseases

The Computer Scientist Trapped Inside His Own Body

Martin Pistorius was 14 when he became locked inside his own body, powerless to move or speak. But computers helped free him.

Martin Pistorius understands time in a way few do. He knows its stretching minutes, hours and years intimately, its tick-ticking that only seems fast when we are preoccupied with living in motion. When he was twelve years old, in his native South Africa, Pistorius became mysteriously sick. His voice went. He stopped eating. During the day he slept for hours on end. Within less than two years, he was in a wheelchair and mute. Doctors diagnosed him with an unknown degenerative disease, giving him two years to live. He didn’t die, but his body broke down.

For three years, Pistorius was in a vegetative state, knowing and feeling nothing. Then, one day, at age sixteen, in 1992, he began to wake up. By nineteen, he was fully awake. But it was only his consciousness that returned. His physical self was left uncontrollable: he was trapped. Those around him thought he was gone, his mind turned off and only his body functioning, but it was the other way around. Pistorius took in life as a helpless bystander. His mind, desperate for distraction, turned the banalities of his hospital room into a kind of theater, everything from the nurses to his family members to insects on the windowsill becoming characters. When he could find no outer entertainment, he turned to imagination. He learned to tell time by the way the light fell in the window.

A man with brown hair and a red t-shirt standing with his blond wife against a pastoral background in the middle of the daytime.

Martin Pistorius and his wife, Joanna.

For three years, Pistorius was in a vegetative state, knowing and feeling nothing. Then, one day, at age sixteen, in 1992, he began to wake up.

One day his caregiver, Virna van der Walt, noticed something odd. Using his eyes, the only organ he could function, Pistorius seemed to be responding to her questions. Sensing that he might still be there, Walt had him moved to the Centre for Augmentative and Alternative Communication at the University of Pretoria for testing. He was twenty-five. Doctors there confirmed what Pistorius had known for nine years: he was still there.

Soon, Pistorius was given a computer with software that enabled him to communicate. His body began to rehabilitate. Slowly but surely he regained control. Pistorius got an education, began a career in computer science, got married. In 2011, he published a book on his ordeal. He called it Ghost Boy. “Have you ever seen one of those movies in which someone wakes up as a ghost but they don’t know they’ve died?” he writes in the prologue. “That’s how it was, as I realized people were looking through and around me, and I didn’t understand why.”

Today, Pistorius regularly speaks about his ordeal. He still communicates through a computer and is wheelchair-bound. He has also become active in raising awareness for augmentative and alternative communication, or AAC; in June, he received an honorary Doctorate from the University of Dundee for his work in the field. We reached out to hear more.

What is the most common question you receive about your time trapped?

Probably the most common question is, “How did I cope?” People who have read my book also very often ask about my parents, especially my mom: what effect did it have on my parents and family? My entire family’s lives became consumed by taking care of me the best they knew how. Their friends seem to drift away, my brother and sister perhaps didn’t get all the attention they deserved and my parents had many arguments about me and my care, no doubt aggravated by the stress and strain of the situation.

A vintage photograph of a disabled and paralyzed man with a bed at the hospital, with his brother there for support.

Martin in 1998, at the height of his illness.

What were some ways you passed the time during those years?

Mostly through escaping into my mind. I would literally lose myself in my imagination. I’d imagine all sorts of things, like being very small and climbing into a spaceship and flying away. Or that my wheelchair would magically transform into a flying vehicle ala James Bond, with rockets and missiles.  I write a lot about this in Ghost Boy but I would sometimes watch things move, whether it be how sunlight moved throughout the day. Or watching insects of some sort scurry about. But, really, I lived in my mind to the point where at times I was oblivious to the world around me.

I lived in my mind to the point where at times I was oblivious to the world around me.

I would also have conversations with people in my mind. Perhaps one of the staff said something about my father which I knew wasn’t valid or fair. I would then in my mind discuss the issue with them and say what I wanted to say. Or there would be something I heard on the radio or television and I would have conversations about that. To be honest I still find myself doing it. I sometimes find myself talking to Joanna, my wife, in my mind when she’s not with me, and I sometimes then need to make a conscious effort to actually tell her when we are together.

What were some things which people around you did during those years that you enjoyed?

I can’t really say people ‘did stuff’ for me. Obviously, I was cared for, but I was like a potted plant if I can be that blunt. There wasn’t really ever that people played music for me. I enjoyed it when the radio was on, but that was usually on because of the people caring for me were listening to it, not for me.

Obviously, I was cared for, but I was like a potted plant if I can be that blunt.

What were some things people did which you did not enjoy?

As I write about in Ghost Boy, all the abuse I suffered. Essentially for more than ten years, people who cared for me abused me physically, verbally and sexually. The first time it happened, I was shocked and filled with disbelief. How could they do this to me? I was confused, I felt what had I done to deserve this? Part of me wanted to cry and another part wanted to fight. Hurt, sadness and anger flooded through me–I felt worthless. Being trapped within my body, I was the perfect victim, I had no way to tell anyone, and there was no one to comfort me either.

A vintage family photo of a bearded man in a blue jacket, an attractive woman with dark hair in a yellow turtleneck, and their three children, including two young boys and a girl.

The last normal family photo of the Pistorius family, before Martin’s diagnosis.

I know you could see things but could you feel as well? Could you taste/smell? Were you able to sleep?

Yes, I could feel, smell and taste. Yes, I slept.

What did you eat?

That’s kind of difficult to answer because we are talking a period of time more than a decade, so it changed. But one of the things that sticks in my memory is the fact that I got fed a lot of strewed fruit which was puréed. This was fed to me because of difficulties with my bowel function.

Being trapped within my body, I was the perfect victim, I had no way to tell anyone, and there was no one to comfort me either.

What sorts of impacts did that period have on your mind and your thought processes today?

It’s kind of tough to know what is a result of my experiences and what is natural, as I can’t really remember my life before. However, I do feel I am much more patient and tolerant. I am without doubt more appreciative of life and know how precious the small things in life are. I feel I am also able, for the most part, not to worry about the things I can’t control. I feel too I am far more compassionate.

A man in a wheelchair with a headband hooking him up to a computer while a woman in a gold pant suit looks on.

Today, Martin uses a wheelchair to get around, and a special computer program to help him communicate. Photo: Lisa Hnatowicz

Once you regained control of your body, what was your rehabilitation like? What were the biggest challenges to coming back to normal life?

In a way, while I had if you like ‘formal rehab’ like physical therapy, I see it more as just living life and working really hard to get to where I am today. It has been a very long–many, many years–and challenging process. I see it more like I was given my life back and I am so fortunate and so blessed that I want to make the most of it. It’s been tough, really tough, but also absolutely wonderful. The physical challenges have been difficult and really frustration. However, the mental ones are probably more intense and overwhelming. There was so much I didn’t know, simple things like going to the store.

I was given my life back and I am so fortunate and so blessed that I want to make the most of it.

Do you do any sort of advocacy work today with people in comas? Have scientists studied your body to try to figure out exactly what happened?  

No, I don’t really do any advocacy work as such. I am however the patron for Communication Matters, a UK charity for people who have complex communication difficulties.

I am also really fortunate that through my life and the opportunities I get able to create a lot of awareness for augmentative and alternative communication (AAC). In fact in June I received an honorary Doctorate from the University of Dundee for my work in the field of AAC and computer science.

AAC is a collective term for a host of strategies to help people with communication disabilities. These can be from the most basic cause-and-effect to highly complex language encoding systems. They can be both low tech, even ‘pen and paper’ solutions to very high tech systems, like the system Stephen Hawking used. In simple terms AAC helps people who can’t communicate using natural speech to be able to communicate.

A white man with brown hair in a wheelchair, showing South African president Thabo Mboki the computer he uses to communicate.

Martin showing president Thabo Mbeki of South Africa the computer system he uses to communicate.

I personally use both a computer-based AAC system as well as a paper-based one. I have an alphabet board which is literally a board with the alphabet printed on it that I can point to the letters to spell out what I want to say. I also have specialized software on my computer, and an app on my iPad and iPhone which I use. It gives me a synthesized voice.

I am a computer scientist and one of my first jobs was at a Centre for Augmentative and Alternative Communication where I was part of the team who saw people with communication impairments and helped them to find ways to communicate. I worked there for four years before moving into the mainstream computer sector.

However, in some or other way I seem to always get involved with AAC. I have given many talks all over the world about AAC, its importance and the impact it has, including to the House of Commons in England and most recently in Washington D.C. I have also been involved with various projects to develop AAC systems.

Acute Illness Essays Rare Diseases

A Brain Infection Destroyed My Marriage, But Made Me A Writer

For two years, I lost much of my ability to communicate. I clawed it back, but not before realizing my husband and I didn't have much to say to each other.

My husband and I were as different as night and day. In our marriage, he spoke the language of computer software and Bluetooth; once, when the principal at the high school where he taught asked all teachers to start providing him weekly lesson plans, he created a computer program to generate them automatically. Me, I balked at learning to navigate a new computer or phone, but cherished language, treating my words like pets and people: each with their own personalities and preferences, each one familiar and loved.

Fundamentally, my husband and I understood language differently. Words had specific meanings in my mind:  “Angry” was different from “livid” which was different from “strongly irritated”. For my husband, though, words were imprecise.  “Weird” was his blanket term for anything he couldn’t describe – from incompetent school secretaries to students who played out-of-tune. Other words passed through his vocabulary like fads: one day he asked me if he looked like a “curmudgeon” in his new suit. I would spend days dissecting his phrasing and sly grin before I realized he thought that was a good thing.

One day three years into our marriage, I stood up after teaching a violin lesson and my feet refused to lift from the ground. I shuffled to the door as if I were ice skating, then dialed my mother-in-law to rush me to my doctor. I would have called an ambulance if I’d thought they would know what to do with me, but how do you explain to a paramedic that you forgot how to walk? The months of biting fatigue, the clumps of hair darkening the drain, the wobbly feeling I got when I wore heels—all the clues suddenly came together to reveal a sickening conclusion.

One day three years into our marriage, I stood up after teaching a violin lesson and my feet refused to lift from the ground.

“Cerebritis,” my doctor called it. “You have inflammation in your brain.”

My sense of time, my short-term memory, my long-term memory, the sensation in my left arm, and my understanding of the world around me unraveled over the next month. But what frightened me most was losing my words.

I used to chatter about my students and crack jokes with my husband as we sat in the kitchen slipping bits of steak or corn to the dogs. Now I lay listlessly sipping coffee from a travel mug with a bendy straw stuck through the hole in the top.

“How was your day?” he’d ask when he came home from work.

“Bad,” I’d say simply.

Not painful, depressing, harrowing, or disturbing. Just bad: a word so general in its negativity that it barely conveyed any meaning at all.

Aphasia. A beautiful name for the implosion of the bridge that connected me to the rest of the world.

Aphasia. A beautiful name for the implosion of the bridge that connected me to the rest of the world.

I felt some comfort in knowing I wasn’t alone. Many survivors of brain trauma struggle for words, struggle to communicate. I watched video after video of Gabby Giffords mouthing “watch” or “spoon” for her speech therapist. I slept with a tattered copy of Jill Bolte Taylor’s My Stroke of Insight in the bed beside me, often waking up to read a sentence or two about her recovery to carry me through the night. But could either of them tell me how to get my words back?

A woman in a red sweater with chin-length brown hair posing for the camera in her living room with a blue chair in the background.

Author Meghan Beaudry today.

My mother-in-law moved into our house to take care of me in August and stayed until March. I struggled to communicate my basic needs to her from the bed in which I had become trapped. I asked her one day for “a thing that you put another thing inside and then put it in the mail.” When I needed a pillow, I requested a “head thing.” She grinned and brought me a hair brush.

As I struggled with my aphasia I wondered for myself if this inability to find the right words for thing was what my husband felt all the time. It was so still, foreign but peaceful.

“I feel like I understand you now,” I once said to him.

“Sure,” he replied.

“Do you like me like this?”

He looked at me with a tight-lipped red-eyed smile that I couldn’t read. Then he looked down at the floor.

Maybe we could survive like this, I thought, neither of us able to articulate but connected by mutual nonverbal understanding. I imagined us holding hands in silence and walking together in a park when this neurological disaster was all over.

I imagined us holding hands in silence and walking together in a park when this neurological disaster was all over.

As the months passed and my body grew weaker,  I stopped walking almost entirely. My husband came to visit me after work in the spare bedroom where I was confined to bed. He seemed to walk through the door later each night. Sometimes when I asked him to bring me water or a snack, he left the room and I didn’t see him again until the next day.

Reentering the world without my words terrified me. I resolved to write five hundred words a day to force my brain to recover what my disease had stolen from me. Sentences grew into paragraphs, paragraphs into essays and stories. All the anguish of losing my way of communicating with the world trickled out onto the page in front of me.

In the hours I spent in bed with my laptop propped up on pillows over my stomach, I waited to pounce on the few words that crept into my consciousness. When I managed to capture an interesting turn of phrase, a pun, or a complete sentence, I immortalized it in a text message to my husband.

Hair today, gone tomorrow, I captioned a picture of a clump of my hair on the floor.

A-pear-antly, I typed under a photo of a pear before I ate it.

I didn’t hear back from him.

“I want to be dunked in a vat of immunosuppressants at my next doctor’s appointment,” I joked one night as my husband stood in the doorway of my room after work.

He looked at the floor straight-faced. “You told me that one yesterday,” he said.

My loss of health and language revealed cracks in our marriage that I hadn’t seen before.

More than anything, what I was trying to tell him was that everything would be okay: that the inflammation that had swallowed my brain would one day recede like the ocean tide, and bring his wife back to him. But I didn’t have the words.

I spent the next two years clawing my way back to health. I relearned how to walk, my legs carrying me from the bedroom to the living room and eventually out the front door. My brain, stimulated by my new writing habit, began to mend the places where it had broken. I started a blog. I attended writing classes. My vocabulary expanded. Being surrounded by others who loved words as much as I do felt like coming home after a long journey.

I recovered from my illness, but my relationship with my husband never did. My words had stitched our relationship together when I was well. My loss of health and language revealed cracks in our marriage that I hadn’t seen before.

Five years after the breakdown of my brain, I still carve out time to write my daily five hundred words. Working hard to relearn what had once come naturally only deepened my love of language. The man I married is no longer part of my life, but I remind myself how lucky I am that words still are.

Creative Commons photo by Mary West.

Acute Illness Essays Rare Diseases

How Visions of Vietnam Helped Me Survive Paralysis

Changing my attitude and dreaming of another land helped me win a fight I almost lost against Guillain-Barré Syndrome.

I was just about to turn 26 when I set my sights on journeying to Vietnam.

It was probably an ambitious trip for someone who’d just been paralyzed from the neck down. But then again, I’ve always tried to seize life by the throat.

Until I was diagnosed with Guillaine-Barré Syndrome (GBS)—an autoimmune disorder in which the immune system spontaneously begins attacking the autonomic muscular syndrome, leading to paralysis and sometimes death–I’d always felt a youthful sense of indestructibility. Becoming dangerously ill was something that only happened to other people, older people, less fit people, but not to me. I naïvely thought my body couldn’t break or fail.

I naïvely thought my body couldn’t break or fail. Then it did, and I found myself struggling for answers.

Then it did, and I found myself struggling for answers. As a young reporter, I worked I was working fairly stressful nine-hour days during the week but ate well, regularly went to spin class, hiked at weekends and never smoked. I sometimes enjoyed some wine with my boyfriend, but there was nothing particularly hazardous about my lifestyle. So why me? Why now? 

Sarah Harvey was 25 when she was diagnosed with Guillain-Barré.

I’m usually pretty calm, even in a manic newsroom, but I found it hard to rein in my anger at being struck down in the prime of life by a mysterious autoimmune neuropathy. And it frustrated me that nobody could explain the cause. “There isn’t enough research yet to tell us why people get GBS,” my neurologist explained. There was nobody for me to direct my frustration against.

The trigger for my GBS was nothing more than a respiratory infection. For some reason my immune system malfunctioned and started attacking the nervous system, causing the nerves to become inflamed. The nerve pain felt like every cell in my body was on fire, and the morphine I was prescribed barely took the edge off. I developed hypersensitivity to the mildest touch, making even getting my blood pressure taken feel like my arm was being crushed by a vice.  My body had become a prison, I could only move my neck and eyelids. I had terrifying nightmares every night.

The trip’s inception probably sprung from my understandable desire to fly away from my reality. Away from the beep of the heart monitor; from the hiss of the ventilator; from the cold white gunk I was fed through my nose-tube and from the purple bruises on my lower belly caused by my daily injections of anti-coagulant. Here, at my weakest point, I began planning my ‘great escape’ to Vietnam. And I think it might have saved my life.

Here, at my weakest point, I began planning my ‘great escape’ to Vietnam.

The day GBS almost killed me, I’d already been hospitalized for three nights. The diesease had progressed to an acute stage where paralysis was choking my diaphragm. I had to have a tracheotomy, but I was told that, even with the surgery, I still had a 20% chance of dying. And even if I survived, I’d probably spend a year in the hospital.

Seeing my boyfriend and parents so upset over my prospects had crushed my spirits. My vitals got weaker, and as they did, the nurses got quieter. Since the tracheotomy prevented me from speaking, they asked me to nod if I were religious and would like to see a priest. Was I dying? I wondered. But how could I, at 25? There was so much more I wanted, needed to achieve. I couldn’t just fade away. I wasn’t going to let myself.

Spoiler: despite almost dying of Guillain-Barré, Sara’s dream came true. She made it to Vietnam, despite lingering nerve pain and facial paralysis.

In the face of plummeting vitals, it wasn’t easy to switch my thoughts from depression to something optimistic, but I tried. GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself, remembering the cancer survivors I had read about who stressed the importance of a positive mental attitude towards recovery. My luck would hold, I assured myself: I was going to get out of this hospital, and I was going to live.

GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself… I was going to live.

So I pictured how it would feel to paddle down the Mekong Delta, to stroll along a leafy boulevard in Hanoi, to sail through Halong Bay on a wooden junk boat with a red sail, and to taste hot pho at a roadside stall.

Hours later, my vital signs started improving. My condition went from critical to serious, and then stabilized. I heard nurses and even neurologists utter the term “miracle”. “God is definitely looking out for you,” my nurse, Saffi, said, as she stroked my hand. I nodded in agreement; the only movement I could make.

My luck continued to hold, perhaps as a testament to the power of positive visualization. After I stabilized I stopped improving, but after being given two doses of intravenous immunoglobulin (which is thought to speed up recovery), I was finally was able to twitch my toes (something I still do today to remind myself how lucky I am).

I then volunteered to take part in a pioneering experiment on using a voice box with a tracheotomy in Intensive Care. Until that point, I’d communicate with nurses using an alphabet board (they’d tap each letter and I’d nod spell out what I wanted). The voice box was a huge blessing for communication. Sometimes on the hospital radio, I’d hear a song I loved and cry that I couldn’t dance. But now, at least, I could sing along, however badly.

“In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi.”

From then on, my physical therapy was intense. After the paralysis eased, I worked on strengthening the muscles that had wasted away while I was in bed. As my arms grew stronger, I learned how to pull myself into a wheelchair, and from there, I threw myself aggressively into my recovery, pushing through the residual pain from damaged nerves and wasted muscles. I progressed to a walking frame and was told I’d probably fall over but I was vigilant and refused to let that happen.

In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi. My luck still held: while my legs were stiff and I still dealt with minor nerve pain, I’d somehow escaped the chronic fatigue, nerve pain and numbness that plagues so many GBS survivors. Together, my boyfriend and I paddled canoes on the Mekong Delta, sailed on the emerald waters of Halong Bay, and tried all kinds of Vietnamese delicacies. It was the purest and most precious sense of freedom after being locked inside my own body. A freedom I’ll hold onto forever.

Acute Illness Essays Rare Diseases

How My Own Experience With Illness Helped Me Help My Grandma Die

My own battle with Guillain-Barré, a rare autoimmune disorder, gave me the experience and authority to be there for my grandmother at the end of her life.

When I was two months shy of my nineteenth birthday, I was diagnosed with a rare affliction that affects one in 100,000 people. While most college students are dealing with heartbreak, I was dealing with Guillain-Barré Syndrome, a rare autoimmune disorder that left me unable to walk, and dealing with excruciating pain. I tried countless medications to impede the disease’s progress. I combatted doctors who didn’t believe me. I took every painkiller you could name. I spent years in recovery. It was hell.

There are many reasons I wish I hadn’t come down with Guillain-Barré. That disease was a real drag. I am also grateful for it because it allowed me to be there for my grandmother, whom I adored, in a profound way at the end of her life.

Eight years after my diagnosis, in the fall of 2015, I was more or less back to normal. This was the fall that my grandmother, Gram, came to live with my parents. We had no way of knowing that it would be the last year of her life.

I am also grateful for [Guillain-Barré] because it allowed me to be there for my grandmother, whom I adored, in a profound way at the end of her life.

Gram was a hoot. She was a good time wherever she went. She also had a hard time hearing bad news— bad news is decidedly not fun. As new developments emerged in the twisted web of her health, it was difficult to get her to listen. She resisted medications, doctors, and hospital stays.

Last spring, Gram was diagnosed with a Stage Four bed sore. It was infected and went all the way to the bone— a real bad news bears situation. She needed an operation, which she got. Then she needed rehab, which she reviled. It was not fun.

When Gram resisted, which she always did, my mother would often tag me in. was given the task of getting Gram to come to her senses. I was the sugar coating to cover a bitter pill. I could do what no one else could. I could say that I’d been there.

She wanted to go home. Wasn’t it ridiculous that they wanted her to stay here?

I explained to her that during my hospitalizations, I had pushed too hard. I made it my sole mission to get home. When I arrived home, I realized that I should have stayed. As annoying as the hospital is, sometimes it is hard to lie in bed at home.

Gram relented. She even listened. She didn’t particularly care for my message, but she deferred to my authority.

The author, Mary Kate Miller, and her grandmother.

 

I was the sugar coating to cover a bitter pill. I could do what no one else could. I could say that I’d been there.

She talked smack about medications. All of the doctors were “idiots” (her word). It helped that I’d been around the block with many of the medications and could hold my own against her complaints. Gabapentin? Yup. That makes you drowsy. Zofran (an anti-nausea medication) not working? That doesn’t mean it’s a bad medication; it’s a sign of how extreme your nausea is. Weed brownies? Worth trying. When you’re dealing with pain that no dose of narcotics can break, everything is worth a try.

In my illness, I wanted desperately to have someone who understood, who really knew what it was like. So did Gram. I was constantly lonely and frustrating. So was Gram. In this case, I could ease some of that pain, but not her physical pain.

Instead of recovering from the bed sore, Gram got worse. She grew weaker, and it became difficult for her to go to the bathroom on her own. She resisted help. She didn’t want the nurses to come with her. She wouldn’t entertain the idea of a bed pan.

I looked at her and said, “I get it. It’s embarrassing, and it sucks. I’ve done it both ways. I’ve accepted help, and I’ve insisted on going to the bathroom by myself… and then when I got back in bed, I felt terrible. Why feel terrible?” She looked at me, skeptical, but she didn’t argue.

My grandmother and I had a very special relationship. We were soul mates, kindred spirits. I cheered her up. That’s what everyone said. On the day that we made the decision to move her to hospice, she looked like a corpse when I entered the room, before she noticed I was there. It is shocking to see someone you love as they straddle the line between the world of the living and whatever that other side is. Once she saw me, she perked right up. My aunts and uncle said it was the liveliest they’d seen her all day.

I was happy that I could be that person for Gram, but it was also deeply confusing to me. I was told that she was dying, and then I show up to find a woman who wants to chat about everything and anything. It made it harder as we approached the end.

I was told that she was dying, and then I show up to find a woman who wants to chat about everything and anything. It made it harder as we approached the end.

On her first day of hospice, she experienced what turned out to be her last burst of energy. She was chatting with my Aunt Sue, giggling. I was angry. All I could think was, you came home too soon. Noticing my reticence, she turned to me with a rare angry look.

“And you,” she said. “I’d like to buy something nice for you and your home.

“I need a cutting board,” I answered.

So began an epic search for an olive wood cutting board. It came in the mail the week after she died.

When you have a long-term illness, it can affect your relationship with death. Sometimes, it’s better to die than to experience excruciating, ongoing pain. In hospice, if you touched Gram, tried to move an arm or a leg, she screamed out in agony. I sat by her bed every day. I took the morphine nightshift, administering her medication every hour on the hour from 10pm to 4am.

I was the first person to let go. I took one night off from hospice care. I had an improv show in the city, and Gram would have wanted me to go. Before I left, I decided to say goodbye. I told her that I’d borrowed one of her signature button-downs and matching sneakers, so that I could bring her on stage with me. If she’d been awake, she would have gotten a kick out of it. I brushed her hair, told her that I loved her. “If this is the last time I see you, I want you to know that I love you very much,” I finished.

“We’re all going downstairs. Do whatever you need to do. I’ll see you if I see you.”

After that, I made a point to say goodbye every time I left her side. She was a stubborn broad, and I knew it would be hard for her to let go. I said it after I finished my medication shift, when I did a coffee run, and lastly, when the hospice nurse came for a visit and asked to talk to the family downstairs.

As we all stood, I said to Gram, “We’re all going downstairs. Do whatever you need to do. I’ll see you if I see you.”

The hospice nurse told us that her body had started to shut down. She would die in the next 72 hours. She passed within minutes.

My Aunt Jackie held her as she died. Even though I wasn’t in the room, I like to think that I was with her too, reminding her that it was okay to die.  I was happy that I was able to be there for her in a way that others could not. Because she was right. I did know what it felt like.

At nineteen, I began a life-threatening journey filled with pain. I hated every second of it, even the memories once I was better. Until it became the thing that allowed me to walk hand in hand with Gram until we said goodbye.

Creative Commons photo by _LisaMarie_.