Chronic Pain

Helping My Son Escape The Migraine Curse

I often wonder how my childhood would have turned out if I'd better understood my migraines. Through my son, I can find out.

My typically rambunctious six-year-old son sits at the kitchen table, unusually quiet, listlessly eating while cradling his forehead in his left hand. What he says next hits me with a tidal wave of dread.

“Mama, my head hurts real bad. Can I go to bed?”

Sounds pretty typical, doesn’t it? Probably just a run-of-the-mill headache, the same as anyone gets. But I’ve learned from grim experience not to just shrug off the possibility that what seems like a simple headache may hint at underlying neurological maladies.

I was just about my son’s age when I received an inheritance I never wanted: migraines. Passed down from one generation to the next like some haunted family heirloom, I inherited my migraines from my mother, who in turn obtained it from my grandmother.

Now, I’m terrified I’ve passed my migraines along to my child.

True, he’s not vomiting, the way I did with every migraine when I was his age. He’s not crying, which means he’s probably not overcome with pain. Good signs all around. But he is pale, and his typically robust appetite has diminished. And in recent months he’s exhibited symptoms of abdominal migraine, defined by the American Migraine Foundation as “a sub-type of migraine seen mainly in children [that] consists of episodes of abdominal pain with nausea, vomiting, loss of appetite or pallor.”

A dark cloud of concern hovers over me as I walk him upstairs, give him children’s acetaminophen, and tuck him into bed with a cold cloth over his forehead. He falls into a deep sleep and is pain-free by morning.

For him, the prior evening’s malady is a distant memory, but I hold on to it. Each complaint of headache or nausea takes me back in time and I’m faced with my own relationship with migraines—and the years of adolescent suffering, desolation, and anxiety that came with them.

Author Sandra Ebejer and her son on Mother’s Day.

Ironically, the pain wasn’t the worst part of my experience: It was the loneliness. From kindergarten through eighth grade, not once did I meet another child suffering from migraine headaches. Because of various family moves, I changed schools multiple times, and yet each new setting introduced the same cast of characters: Dismissive educators, confused classmates, and the occasional sympathetic school nurse. I became known as “the girl who is sick all the time,” as teachers would dispense chewable children’s aspirin and principals would admonish me for not playing through the pain. On many occasions I had to listen politely to a frustrated adult lecture me on how to suck it up, while one half of my skull felt as though it was being carved open with an ice pick.

The problem wasn’t that the adults in my educational life didn’t care, but that, as non-migraineurs, they just couldn’t grasp how a mere “headache” could cause a child so much distress.

This lack of understanding is commonplace. The Migraine Research Foundation states: “Kids with migraine are often undiagnosed or under-treated, and there are very few headache specialists who will treat them.”

The problem wasn’t that the adults in my educational life didn’t care, but that, as non-migraineurs, they just couldn’t grasp how a mere “headache” could cause a child so much distress. Every time I requested medication or pleaded to go home, they assumed I was being dramatic. I never wanted to talk back but was aware that I knew so much more about my predicament than those in a position of power. It taught me an important lesson, which I hope I can pass on to my son as he ages: Be respectful but push back when needed, and never let anyone belittle your pain.

It taught me an important lesson, which I hope I can pass on to my son as he ages: Be respectful but push back when needed, and never let anyone belittle your pain.

I often wonder how my childhood would have turned out if I’d known then what I know now about managing my migraines. Had someone explained the many factors that can induce migraines (such as dehydration, heat, physical exertion, foods, and stress) maybe I could have done something to limit the pain and isolation I spent so many years enduring?

Of course, I can’t change my past, but having a child is still an opportunity to pay my lessons forward. So I teach him to eat right, keep hydrated, sleep well, have fun, and be the boisterous little boy he’s meant to be… but to always take a break when he begins to feel his head ache. And when I do, I think to myself: Don’t be like I was.

Chronic Illness Chronic Pain Disability

The Stigma Of Fun When You’re Disabled

Why do so many people assume that just because I'm in too much pain to work, I shouldn't be allowed to do anything else?

I was sitting in an uncomfortable wooden chair next to my lawyer. My walker sat in the aisle next to me, and I rested my trembling hand on the handle. After over two years of waiting, I was finally there, sitting before a judge at my disability hearing.

The amount of preparation and work leading up to that point had been extensive. I’d filled out form after form detailing my symptoms and the way they impacted my life. Friends and family had written letters of support, and doctors had submitted paperwork. I’d given the Social Security Administration literal boxes full of medical records spanning the four years I’d been sick.

In that time I’d gone from working full time, to part time, to unemployed. I’d seen over twenty-three different doctors and specialists seeking answers and help. I’d taken medication after medication. I’d done therapy, an intensive pain management program, steroid injections, and massage. I’d tried yoga, pool walking, and biofeedback.

And yet still my symptoms persisted. I was in pain daily. Pushing through crippling exhaustion to perform even basic tasks, I struggled with depression, loneliness, and isolation. On top of that, I was barely holding on financially. All my resources were practically gone. So much was riding on this one hour with this one judge.

Are You Chronically Ill Enough To Satisfy A Judge?

He began his questioning, stripping back layer after layer of my life, until I felt exposed to the bone.

What was my diagnosis? What symptoms did I have? How did they impact what I could or couldn’t do? I taught a class two hours a week: if I could do that, why couldn’t I work more than that? What medications was I on? What were their side effects? How many hours, on average, did I spend in bed a week? How could I fulfill my parenting duties if I was in so much pain? The judge even asked if he thought my spouse had divorced me because I was sick.

The judge even asked if he thought my spouse had divorced me because I was sick.

The process of applying for disability benefits is highly demoralizing. Pages of forms ask you to list the activities you can no longer do. You are forced to focus on all the negative aspects of your disability: you’re questioned about everything you do, the way you spend your money, even your relationships.

The paperwork, questions, and explanations all point to the main question the SSA wants to know: Are you capable of working a full-time job?

If You’re In So Much Pain, Why Are You Still Doing Things You Enjoy?

And then, just as I thought were were done, the judge paused and asked one more question.

One of those twenty-three doctors, in the thousands of pages of documents spanning over four years, had mentioned in their notes that I’d had a performance coming up. The judge latched on to that. My heart sank.

The judge asked me what the performance entailed. How long, exactly, was I on stage? What did I have to do with my body?

“5 minutes,” I said. “I use movement, poetry, and video to tell a story. I use my walker or cane during my performances.”

Did I have to carry anything? Did I memorize things to speak? What did I do before the performance?

“I don’t have to carry anything; there are stage managers for that,” I explained. “I can no longer memorize my poems, so they are always pre-recorded. Before the performance I just sit backstage and then after I’m usually shaking and needing to drink a lot of water and compose myself before I go home. After I go home I have to take a long bath and take extra medications. I’m usually in bed for a few days after a performance.”

“If performing takes such a toll on your body, do you continue to do it?”

The judge continued to ask questions; in fact, the line of questioning about my performance took longer than any other portion of the hearing. I was asked more questions about those five minutes on stage than I was about my symptoms, my daily life, or my attempts to work even part-time.

Finally, he asked: “If performing takes such a toll on your body, do you continue to do it?”

Through teary eyes I replied: “Because it is one of the few things in my life that brings me joy.”

The Stigma Of Fun When You’re Ill or Disabled

I wish I could say this was the only time I’ve ever had a conversation like this, but it’s not true. Acquaintances, doctors, and even friends sometimes want to know all the details of how I can do certain activities, if I can’t work. Because our capitalistic society is focused on ‘productivity’, there is an implied (and, all-too-often, spoken) idea that a disabled person who can’t work should deny themselves all the other things in life that make it worth living—joy, meaning, fun.

We live in a society where participating in hobbies or activities just for the sake of joy is not valued. Even well-meaning people fall into this trap, revealing themselves to believe that having fun is a ‘right’ that you need to earn through work. Other disabled people I know have recounted stories about being questioned about everything from going on vacations to taking short hikes to simply going out to eat.

I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

And yet—because daily life for myself and many other disabled people is hard both physically and emotionally–it feels even more urgent to me that we hold on tight to those things that bring us joy.

Happiness isn’t something we earn by going to work every day; it’s a gift we give ourselves. As a friend of mine one said: “We should be allowed to move through the worlds in whatever ways we are capable of.” If I push myself beyond my body’s limits every once and a while to experience joy, that doesn’t mean I’m not disabled, or that I’m capable of sustaining that degree of energy forty-hours a week. It means that, as a disabled person, I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

The True Cost Of Being Happy When You’re Disabled

The judge didn’t decide my case that day. In fact, it took six more months, and two additional hearings before he made a ruling. But ultimately, I was lucky: the judge decided the occasional performance did not negate my disability. I was granted SSDI.

Unfortunately, this does not mean my disability check is secure. In a 2018 budget request, the Social Security Administration proposed the ability to use Facebook and other social media platforms to monitor those applying for or receiving disability benefits. The claim is that this would allow SSA to better screen applicants, as well as investigate potentially fraudulent cases of people who are receiving disability benefits but are not actually disabled. While nothing has been approved yet, the current administration supports this proposal. A final ruling is expected in 2020.

If this is approved it could mean that those pictures I post on Facebook and Instagram, the ones taken on my ‘good days’ or when I’ve managed to muster up enough energy to go out and do something fun in the world, could be used as evidence that I’m not truly disabled. The posts I make could jeopardize my benefits. I will have to hide any joy I experience in my life, to ensure politicians and bureaucrats without any bodily ailments that I am joyless enough to eke out a meager existence.

I am going to pack as much joy into this life as possible. And no one has the right to take that from me.

But as my disabled friend Andrew Montgomery points out: “For the most part, no one outside your own bubble sees the true price disabled people pay for these moments of happiness: all the extra costs, and planning, and arrangements, and anxiety, and pain, and fear.” They especially don’t see the days of recovery that might follow a disabled person allowing themselves even one little thing that the able-bodied take for granted.

These aren’t the things posted on social media. As humans, we don’t post pictures of ourselves in pain. We post pictures of our happiest moments, so we can remember them later.

Which is why fun is so important to disabled people like me. It sustains us through our rougher times, gives us hope. So even if I can’t work 40 hours a week, I’m going to keep performing, keep camping, keep going out to eat, keep traveling as much as I can. I am going to pack as much joy into this life as possible. And no one has the right to take that from me.

Chronic Pain

Hands As Big As Pillows, And Other Weird Migraine Symptoms

Aphasia, hallucinations, and synesthesia are all proof that there's more to a migraine than just a bad headache.

“Something is not right,” I told my husband on a Saturday afternoon six years ago. “My hands are impossibly large. I know they look normal, but I can feel them getting bigger.”

I can’t imagine how confused he was. I was just as confused… something mysterious was happening inside my brain to skew my body perception so drastically. I laid down on the bed, and suddenly, my right hand was as big as the pillow it rested on. My left hand was the size of the mattress. Whatever I touched, my hands assumed that item’s approximate size and shape. My feet stretched far away as if being pulled through a vortex. I tried to calmly explain, but my tongue was growing too. How did it still fit in my mouth?

I could see that my body parts were their usual size, but nothing could reconcile what I saw with the sensation that I was suddenly impossibly out of proportion. That day I had my first experience with Alice in Wonderland Syndrome, a rare migraine symptom which can also occur with seizures and some infections. “Becoming” Alice is so rare, I had never heard of anything like it in decades of migraine experience. For once, Googling symptoms would console rather than devastate me.

My left hand was the size of the mattress. Whatever I touched, my hands assumed that item’s approximate size and shape.

It was hard to find the right words. I started searching: “hands feel gigantic”; “hands seem to be growing”; “tongue feels too big”. I was relieved to find others describing the experience as a pre-migraine symptom.

I’ve logged 30 years of migraines, with wide variation in severity and frequency. During better years, I go months without a headache. In bad times, there are 2-3 per week. I experienced the worst end of that spectrum during fertility treatments and pregnancy. Leading up to the afternoon I became Alice in Wonderland, my migraines had been increasingly frequent and intense  — and bizarre — due to stress and hormone fluctuations during fertility treatments.

Migraines Are More Complex Than Just Bad Headaches

A lifetime of migraines teaches you that your own senses can’t always be trusted. A fresh brownie tastes like fish and onions? Migraine’s coming. Fingertips feel like I’ve been clutching ice cubes? Migraine’s coming. They have struck during final exams, date nights, vacations. Live with migraines long enough, and you will experience one for every type of situation.

Senses betray the migraineur, and sometimes words do too. At the conclusion of a summer vacation in Cape Cod, my husband and I started to argue in a long airport security line. I looked at our tickets, but didn’t know what to do next. My husband became frustrated.

“I don’t understand,” I pleaded. “I can hear the words you’re saying, but I don’t know what you mean.” It was as if the English language had been excised from my brain, and only interrupted signals were left.             

A few weeks later, I was riding down the highway (not driving, thankfully) when another migraine started. Suddenly all the billboard writing was backwards. I thought, “Why would they print those signs backwards?” Then I realized my misfiring brain had played another trick.

Even one of migraine’s most common symptoms, the aura, can be incredibly varied and hard to describe.

Even one of migraine’s most common symptoms, the aura, can be incredibly varied and hard to describe. Only about one quarter of migraine sufferers experience aura, the psychedelic prelude to a headache when everything temporarily goes sideways. Visual disturbances are the most common symptom of aura. For me, it starts with a bright spot in my vision, like I’ve been staring at the sun. The spot grows until I can’t to read or drive. To say I’m blind feels melodramatic, but how else do you describe the experience? Within an hour, the blindness fades into a throbbing, clammy pain. Some sufferers seek quiet or dark; my headaches are relieved by little but sleep.

If You Have ‘Weird’ Migraines, You’re Not Alone

I belong to some online communities where migraineurs share their symptoms, treatments, and commiseration. When asked to describe their visual auras, community members gave these vivid answers:

“For me, it was like using a charcoal grill — when you squirt the lighter fluid and everything looks blurry, wiggly and ‘confused’ as the gasses rise in the air before you ignite the fluid on the coals.”

“Mine are like like small, fiery wheels with jagged zig-zag edges.”

“I have swaying and pulsing lights (with my) auras. It’s accompanied by sounds, one is like a ‘waamp waaaamp’ and another is a screeching sound. I’ve had them since I was a kid so at that age I likened it to a witch’s cackle.”

“I’ve gotten what I call ‘disco lights’ (a doctor-friend called it ‘dazzle’) and giant, sparkly lightning bolts.”

“It‘s a bit like a kaleidoscope. Actually, it’s exactly like a kaleidoscope, only not as narrow a point of clarity in the middle. It’s all peripheral.”

Just by following these collections of strangers who also experience migraine, I have begun to appreciate the breadth of migraine suffering. Some can make jokes about it or have enough good days to reflect on the agonizing bad days. Others are literally disabled by constant pain.

I remain grateful my good days still outnumber my headache days. And I get lost in fascination with the strange rabbit holes my brain can conjure.

Chronic Pain

I’m A Refugee Addicted To Painkillers In Canada

But when you have chronic pain and have to work 12 hours a day in a factory or else people back home starve, what's the alternative?

I am a refugee, working a factory floor job here in Canada. For years, I have lived with chronic back pain.

My days are long. I wake up at 5am to commute two hours each way for a menial 8-hour shift cutting fabric for clothes, the only job a refugee like me can easily get. 12 hours out of the house altogether, and I labor through it all with a piercing back pain that I have lived with for years. At worst, it feels like I am being pierced with needles; at best, it feels like an uncomfortably prickly hug.

To ease my discomfort, my doctor has put me on painkillers: a mixture of acetaminophen and naproxen. I dread looking at the label: “Taking more than the recommended dose for more than two weeks may cause liver damage.”

I feel an overwhelming urge to prove myself as worthy of my adoptive country, and so I work this grueling factory job despite my pain.

I am on month four of taking these pills. I binge them almost in defiance of what they are almost certainly doing to my liver. When I’m honest with myself, I admit I’m probably addicted to them—I find myself popping more even for light pain now–but I can’t just stop taking them, even if I wanted to.

A handsome man from Zimbabwe wearing a blue suit, with a bald shaved head.
Author Ray Mwareya.

As a refugee in Canada, I need this factory floor job. The alternative isn’t homelessness, necessarily–Canada has a fine public welfare system–but I dread being a burden to this country that took me in, that gave me a home, that sheltered me in my house of weakness. I feel an overwhelming urge to prove myself as worthy of my adoptive country, and so I work this grueling factory job despite my pain, even as I’m sure it is taking years off my life.

Even if I didn’t feel this sense of patriotism, though, I couldn’t go on welfare. I come from Zimbabwe, a broken country where public clinics don’t have even paracetamol, and where the local currency is so worthless that people wash and hang up old U.S. dollar bills to dry. I have family there, who need the money I send back: if I give in to back pain here, they may well give away their lives to hunger over there.

Where I come from in Africa, opioid addiction isn’t common, even if chronic pain is.

Where I come from in Africa, opioid addiction isn’t common, even if chronic pain is, because painkillers are impossible luxuries that almost no one can afford. So sometimes, I feel almost bemused by the fact that, as a refugee living in Canada, my circumstances have changed to such an extent that I could be on the edge of painkiller addiction myself.

Yet, what is the choice? My pain is very real, and most of the time very excruciating. I can not afford to stop work, even though it’s making my back problem worse. In the factory, I see women in their 40s with braces strapped around their mid-sections packing boxes with gritted teeth: their backs are finished. And I know, eventually, this is my fate too.

This is the dilemma many refugees face. Politicians and media pundits cast people like me as undesirable, unemployable addicts taking advantage of the system and sucking up welfare, but the reality is that I am an addict because I won’t take the help of the system, or take welfare. I’m a painkiller addict because I work hard, and I can’t ever stop to rest.

Pain comes for everyone. But for people like me, it doesn’t stop until it takes us away.

Pain comes for everyone. But for people like me, it doesn’t stop until it takes us away. Which is why I laughed when my boss the other day asked me to fill out paperwork in case I get hurt on the job, in which case they’ll pay medical expenses up to $20,000.


She asked me if I had any dependents, and I said no. “You need to put a next of kin down,” she said. “If something happens to you, the company will still need to pay anything left over to your survivors.”

I laughed. “My unrelenting back pain will gobble all of this up. Nothing will survive me.”

Chronic Pain

Why I Lied To Friends About My Chronic Pain

When you lie about something like migraines out of shame, the lies keep stacking up until you've got a tower of them, ready to topple.

“What did you do last weekend?” my best friend asked.

“Nothing much,” I lied.

What I’d neglected to tell her was that the past 36 hours has been spent in agony and in bed. A massive migraine had kept me immobile through the weekend, during which time I could scarcely do more than twitch a toe to assess my pain level. After 36 hours, the agony slipped back into the void. It was safe for me to revisit the world.

Unpleasant, sure. But not necessarily shameful. So why had I lied to my best friend about it?

The Jenga Tower of Dishonesty

My migraines had kicked up in their frequency. For the past three months, my husband had done his dusting around a wife-shaped lump randomly distributed by migraines through our house. During this time, I’d canceled every outing I’d planned with friend; I was a jinx when it came to meeting for lunches, dinners, and movies. When the pain took hold, my only solace was a bed, a darkened room, and a cold cloth, having no choice but to cancel plans when my migraines attacked.

I kept all this secret from my friends, though. I was ashamed to tell them that my body was betraying me in ways I didn’t understand.

Why were these lies necessary? Mostly, I was ashamed of being disbelieved.

So friends would ask me: “Where have you been hiding yourself?” And I’d vaguely evade the question: “Just busy.”

These little lies of omission might not seem like much. But they add up. At first, I lied because I thought my bi-weekly migraines would just be a phase, quickly put behind me. But as the ‘phase’ became my permanent reality, these insignificant excuses started shifting the trust my friends had in me. Every additional lie was like poking a tiny little Jenga piece out of place while no one was watching. Where I once could commit to dinners and get-togethers with friends, now I was a big flake. And worse, my friends began to view me as secretive, where once our friendships were defined by my emotional and factual honesty.

Why were these lies necessary? Mostly, I was ashamed of being disbelieved.

The Shame Of Not Being Believed

When I described my migraine attacks to my husband, I often felt like I was reciting the monologue of a crazy-dramatic person: how my head turned into a blistering-hot anvil, or how movement made me vomit like I’d consumed the guts of a rotten pumpkin. Why bother other people with these details? My symptoms were the stuff of high-stake sci-fi movies. Who would believe me?

My symptoms were the stuff of high-stake sci-fi movies. Who would believe me?

As something I didn’t quite understand racked my body, I didn’t want to deal with the additional pain of looking into a loved one’s eyes and see they didn’t believe me. I was already losing my health; I couldn’t bear to lose the respect of people I loved. I wasn’t sure I could cope. I needed my friends to stay my friends–even at a distance.

This tiny distance seemed unimportant at first. My friends were still my friends, I just didn’t really see them, and if I got lonely, I had my husband and dogs to chat with. To everyone outside of this most immediate circle, though–the circle I couldn’t hide my migraines from–the little lies went on, and I continued to nudge the Jenga pieces of my friendships until I could feel the whole tower wobbling. I could feel the distance growing.

Nothing To Fear

I woke one morning to realize I’d isolated myself from my friends.

A migraine attack is a lonely event. The pain locks you away from the world: sentences become unfinishable, another’s touch unbearable. But outside of the throes of a migraine, I realized that I didn’t need to be alone. I didn’t have to chose a life without friends.

So I opened up up. I called friends to reschedule plans, then let them know that I was having migraines.

Most of my friends were shocked to hear that I hadn’t shared my chronic illness in the first place.

The disbelief I’d feared? It didn’t come. Most of my friends were shocked to hear that I hadn’t shared my chronic illness in the first place.

That’s not to say that my migraines didn’t cause some permanent casualties among my friendships. Some friends simply slipped away when my migraines prevented me from keeping plans for the umpteenth time.

But for the most part, when I let the Jenga pieces fall where they would, I was comfortable with where they landed.

Conclusion

Today, I realize that my need for some semblance of control over an illness that rendered me powerless was what led me to hoard my secret in the hopes that I could hold onto the reactions of those closest to me. Thank goodness I stopped and gave my inner circle their own choice regarding my health.

Now, I have a dependable group to help me through.

Now, I don’t have to face my migraines alone.

Chronic Pain

When Mom Started Vaping, Her Chronic Pain Disappeared

My mother had given up on ever finding relief for her chronic fibromyalgia. Then her doctor prescribed medical marijuana, and everything changed.

My 72-year-old mother doesn’t drink. She’s never smoked cigarettes or taken drugs. My mother reads Shakespeare for fun. She loves opera and classical music. She and my father own six exotic birds, pets they adore.

My mother is an artist. I grew up watching her draw portraits rendered in charcoal, pencil, and pastel. She continued to draw after my sister and I moved out in the early 90s, entering local art contests and filling up sketchbooks.

I live a couple of hours away from my parents in New York’s Mid-Hudson Valley, so I didn’t notice when Mom stopped drawing until she began tentatively sharing work on Facebook that she’d done on her iPad.

These drawings were different from the ones I remembered as a child. They had a digital flatness to them that wasn’t present in her earlier work. When I asked her about them, she explained that she could only draw in bed using a tablet because she didn’t feel well most of the time. Standing at an easel was impossible. Even sitting at the table to draw had gotten extremely difficult. This was the first time I realized just how bad her chronic illness had become.

My mother, and my two daughters.

A slow descent into chronic pain

My mother has fibromyalgia. She was diagnosed in 2007, the year she turned 61. My kids were six and three at the time. My focus was entirely on balancing the day-to-day needs of a young family.  Maybe that’s why I’d failed to notice that as my own life was speeding up, my mother’s life was slowing down.

When I asked my mother what she remembers about her illness from this time in her life, she described it as coming on gradually. “It started slowly. I was very active, going to the gym every day. Then my daily headaches started to get worse. I hadn’t been getting migraines very often. Now they came back and were more severe.”

I read about fibromyalgia and tried to understand it better, but I was distracted, engulfed in the chaos of early motherhood followed by the frenetic pace of having school-aged children.

When I asked my mother what she remembers about her illness from this time in her life, she described it as coming on gradually.

During one of my parents’ rare visits, my father mentioned that Mom slept until 9 or 10 every morning. It took her a long time to wake up and get moving. Then she would inevitably take a nap, spend some time on the computer and go to bed early.

My parents couldn’t plan anything or go anywhere. My father had taken on the responsibility of caring for the birds, cleaning the house, food shopping and preparing meals. This was a wakeup call for me. I’d had no idea how debilitating my mother’s fibromyalgia had become.

In an effort to reconnect with my mother, I asked her to illustrate a children’s book I was writing. I missed her pencil drawings from my childhood and wanted to feature them in the book. I also wanted to give her a reason to get out of bed, even if it was only for a few minutes a day.

Renewed purpose and connection

My mother loved the idea of illustrating my book. She got a sketchbook, some new pencils, and a tabletop easel so we could work together from afar.

We fell into a routine where I would request a drawing via email and Mom would get to work on the piece. It took her days or weeks to finish a drawing depending on how she felt, but neither of us were in any rush. This collaboration made us closer, gave my mom a new purpose, and helped me understand how her illness impacted her life on a day-to-day basis.

Our daily interactions made me much more cognizant of what Mom was going through. She continued to struggle with daily headaches and fatigue. Botox treatments and pain killers helped somewhat, but bad weather could easily derail her. She was tired all the time. She had flare ups that left her bedridden for days as if she had the flu, but she was determined to work with me.

Eventually, the Botox stopped working. Mom described dealing with her worsening symptoms as “pushing through” the pain. She said, “I’ve always had something hurt. You get used to it. The fatigue was much harder to overcome. It was like hitting a brick wall.” We finished the book, but Mom was getting worse.

Illustration by my mom, Judith Krongard.

 

Cannabis brings relief

In August 2018, New Jersey Governor Phil Murphy signed an executive order intended to make it easier for people to obtain medical marijuana. By then, my mother was once again isolated and depressed, unable to plan things or experience any real quality of life.

“I spent most of my time on the computer. I read a lot. I drew my pictures. I accepted that I was disabled,” Mom said.

By the time Governor Phil Murphy came along, my mother—a 70-year-old grandmother who never had so much as a hit of pot—was more than ready to ask her doctor about using cannabis to get relief. 

Says mom: “I had always wanted to try medical marijuana, but it wasn’t available.”

Her neurologist referred her to a doctor who could prescribe medical marijuana. The process of getting the drug took about two weeks. She left the dispensary with two different strains of pot and a vape pen.

“We went home, set up the vape, and I took my first hit. About 15 minutes later, the headache I’ve had all my life, every day, 24/7…stopped.”

“What happened after that?” I asked.

“We went home, set up the vape, and I took my first hit. About 15 minutes later, the headache I’ve had all my life, every day, 24/7…stopped.”

“Did you cry?”

“I think I giggled,” Mom said. “It literally gave me back my life. I’m no longer a prisoner of the weather. I can get out. The fatigue is just about gone. I’m off Ambien and opioids.”

New beginnings

This past Thanksgiving, my parents were able to come over even though the weather wasn’t good. My mother brought her vape pen and when she excused herself so she could use it privately, I told her it was perfectly fine for her to vape in the living room. It is, after all, her medicine.

Mom has begun adding activities back into her life. At first it was just little things – trips to the store with my dad, breakfast at the diner, doing a load of laundry here and there. Recently she started exercising. “When the weather warms up, I want to take walks outside again.”

My mother is strong. She’s lived with her illness in silence for over a decade, just as so many people with chronic illnesses do.

My mother is strong. She’s lived with her illness in silence for over a decade, just as so many people with chronic illnesses do.

Mom continues to draw on her tabletop easel. She loves drawing nature scenes and animals, especially birds. I’m incredibly grateful that she found something that gives her relief and enables her to do what she loves.

I’m also grateful that she was so willing to share her struggle with me. It taught me the importance of small triumphs and the value of each moment.

Creative Commons photo from the Electric Tobacconist.

Chronic Pain

How Imaginary Light Soothes My Chronic Pain

I was skeptical that guided imagery could help my rheumatoid arthritis. I'm pleased to say I was wrong.

I thought I misheard the instructions.

Visualize a white light entering the crown of the head and gently flowing down the spine. Let it settle where you feel tension or pain.

As I reclined on my yoga mat, confused, I wondered when we would get to the stretching and poses that would help the inflammation move away from my tender joints.

Instead of exercising, I’m painting pictures of wispy clouds with my imagination and trying to get them to permeate my body? Come, on! I need relief!

I took a long inhale and tried to make this work. The teacher must know what’s she’s talking about. Give this a chance, I told myself.

Give this a chance, I told myself.

So, I questioned everything. What does a spine look like? How do I get light to settle into my joints? Is anyone else actually doing this? What should I make for lunch? This is silly.

Breathe. Focus. You can do this, Angie.

I like a challenge and stuck with it. After all, this class is called therapeutic yoga and geared at folks like me, so here I am, surrounded by friends with rheumatoid arthritis, Crohn’s Disease and other autoimmune conditions.

The instructor, a certified yoga teacher and physical therapist, spoke with soothing confidence that kept me on track.

Light. Joints. Pain. Got it.

I kept visualizing and eventually changed my internal story from clouds to sun rays. They could somehow penetrate better and were ample for the harvesting from the glowing orb that took over my mental vision.

Feel the warmth of the light. As you inhale, bring it all in. Let the light flow through your body.

As the minutes ticked away, this weird-to-me exercise (known as guided visual meditation or guided imagery) started to play out like a movie, or maybe a dream. I simply noticed the images and observed.

Light. Joints. Pain. Got it.

Swirls of white light inhales coiled around my vertebra and came to a slow, floating halt around my hip bones, which looked like parts from a Halloween skeleton decoration in my mind’s eye.

Hmmm. I’ve got this.

My next inhale was robust and audible. I paused at the top to let the sunrays work their magic, then sighed long out my mouth. As the air exited, my body sunk deeper into the yoga mat, allowing my muscles to relax. Tension melted away.

I listened to the verbal cues and then as quick as it started, we were instructed to wiggle our fingers and toes to wake up the body.

What just happened? I didn’t have time to think and instinctively followed the next instruction, which involved getting on our hands and knees, in a table-top pose. The instructor’s voice began to fade as my attention moved to my physical body.

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

My hip pain was… almost gone. My wrists weren’t aching. What was happening?

The Arthritis Foundation says guided imagery is a “scientifically validated way to relieve pain, stress, anxiety and depression.” The power of your thoughts indeed influences your physical health.

I know that visualization works, and now it’s a regular part of my yoga practice. This experience also planted a seed for a new habit — off my yoga mat.

When my body is physically uncomfortable or I feel overwhelmed with the tasks of the day, I take a few moments and visualize my body being bathed in white light from those sun rays.

I change my internal story from words of frustration and anxiety to hope and healing. I tell myself I’ll feel better.

You hear the old phrase “mind over matter”, and for me, it works. It takes time to trust the process, but once you can quiet your mind and conjure up images of healing, the brain somehow forgets to send out pain signals.

A little imagination and an ounce of curiosity is all it takes to give it a go for yourself.

Chronic Pain

How Chronic Illness Helped Me Perfect My Craft

By writing poetry about the migraines that have afflicted me since my twenties, I gained a mastery over my craft I might otherwise never have found.

Poetry struck me before I was diagnosed with migraine headaches. I don’t remember when I wrote my first poem. My mom and dad both wrote poems regularly, and I grew up believing it was something everyone did. As necessary to daily life as reading books.

In high school, my English teacher Mrs. Wallace encouraged me to write more, and showed me how to edit and polish what I wrote. Thanks to her support, I published my first poem when I was fourteen.

I gave up writing poetry in my mid-twenties, at around the time I began to have “sick headaches,” and ten years before migraines began to make themselves a regular part of my life. I stopped writing because a male college professor told me my poetry was no good because I didn’t write like a man. I don’t blame him for the headaches, but his words certainly contributed to my self-doubt.

I gave up writing poetry in my mid-twenties, at around the time I began to have “sick headaches…”

I began writing daily in my forties. I wrote plays, short stories, but never a poem. I didn’t believe I could write poetry, but I felt confident about my plays and short stories.

At first, the migraines came only twice a year. Over time, they became more frequent so that I was making regular trips to the emergency room, and seeing my neurologist more often than my internist.

After years of preventive medication, rescue pain relief, changes in my diet, additions to my exercise routine, and trying every possible migraine remedy I heard or read about, the migraines became chronic and I was at their mercy every other day, sometimes for days at a time.

My writing suffered even more than I did.

Sandra de Helen.

After trying one remedy, which entailed drawing my headaches, and I realized the drawings looked almost the same. One day I remembered that the art I’m best at uses words as its medium. I began to write migraine poems.

Given the frequency of the headaches, I wrote a lot of migraine poems

The accepted wisdom is that if a person spends ten thousand hours practicing their craft, they will master it. If that’s true, I am a master migraineur.

What is true for me is that by writing migraine poems even when I was incapable of writing other poetry, or writing anything else at all, I was honing the craft of poetry.

The accepted wisdom is that if a person spends ten thousand hours practicing their craft, they will master it. If that’s true, I am a master migraineur.

Unlike the drawings I made of my headaches, the poems became more nuanced, better at metaphor, included symbolism, and had meaning beyond the experience of pain. I went from writing about the pain to describing the migraines as a stalker, a jealous lover, a heartless guardian. I wrote about headache experiences and found they reminded me of other experiences in my life. I wrote different formats such as haiku and senyru.

Writing while under the influence of pain taught me how to block other distractions, how to hone in on making my work better no matter what life tossed me.

I had given up writing poetry after one bad experience. Years of writing while experiencing intense pain allowed me to return to the craft, to once again call myself a poet.

Creative Commons photo by Mathilde Audiau.

Chronic Illness Chronic Pain 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 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.