Chronic Pain Essays

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 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.

Chronic Pain Essays

How My Chronic Illness Taught My Four-Year-Old Son Empathy

I never thought anything good could come out of my migraines. Then I had a son, and they became a tool to teach him life's most valuable skill.

I like things to be predictable. I revel in the knowledge that summer is hot, winter is cold, and should I choose to indulge in too much cheese, I’ll sweat like I’m wearing a winter coat in summer.

My migraines themselves are even more predictable. I may not be able to foresee when or where one will strike, but they’re painfully predictable in their structure. Once the cycle begins, I can count on the red-hot pain in my head, the nausea, and the chills.

My biggest migraine surprise, however, has been observing my four-year-old’s reaction to them. It’s like nothing I could’ve predicted.

My migraines are the great crowd displeaser. My neurological condition takes away days of my life, leaving friends and family behind. They force me to cancel plans and rearrange schedules in favor of spending the day in a darkened room with a scorching-hot hibachi grill attached to my noggin. The adults around me see this, and it’s a strain maintaining our close relationship. My son, Richard, sees this and simply sees his mom.

For Ritchie, I’ve always been a mom with migraines.

For Ritchie, I’ve always been a mom with migraines. He knows me as the loving parent who can throw the best bathroom dance parties and the mom who hides in the bedroom because of the sickness in her head. I’m both of these people, and he hasn’t tried to separate the two to make one sick and one healthy. Unlike others in my life, he has never tried to seek control of the situation by fixing it. These are the tricks that friends’ grown-up, healthy brains employ to make better sense of my affliction, a kneejerk response to the feeling of powerlessness that most of us get when we’re confronted with chronic and insensible illness

My son takes an altogether different route.

“You will feel better! You’re with me,” Ritchie whispers in my ear during a full-blown attack.

A mother and her four-year-old boy laugh together outside at a Renaissance Faire.

Me and my son Ritchie at Ren Faire.

My son has managed to always do the one thing others have missed: just love me. His sense of empathy has grown along with him, and I find this incredible because all I see is the pain my migraines cause. I’m constantly waiting for the other Converse sneaker to drop. How will our bond continue to develop if I’m not able to give Ritchie the consistency I feel he needs?

Even if math were my strong suit, I wouldn’t be able to calculate how many hours I’ve spent crying thinking about how I don’t want my health to hurt the connection we share. That would crush me. I’d have to find a way to remove my heart because I simply wouldn’t want it anymore. I worry that it must be difficult to trust me to take care of him when it seems like I can’t take care of myself. Love and trust go hand in and hand, and my greatest fear is that he’d stop loving me because I’m not a constant presence. How could I blame him? Kids bond through play and consistency, and my migraines take away both.

My son has managed to always do the one thing others have missed: just love me.

With me not around to foster it, I’ve worried that our bond would simply wither away, what with me in bed all the time. Slugs aren’t much fun to play with, and a slug in bed with a migraine is even less interesting. My health might create a distance that I won’t be able to bridge. My head hurts and my heart aches. Part of a mom’s job is to fix what’s broken for her kids, but I’m not even able to even fix myself. Am I even a real mom if I’m not able to be there for my son?

A little boy with blond hair holds up a sign saying "I love you Mom"

My son knows that love means wanting someone to feel better, not for you, but for them.

“I’m always with you…” I hear Ritchie say as I lay there like a slug.

Each time I fear I’ve let him down by canceling a bath time disco party, he’ll knock me over with a supportive truth. “Mom, I’m here for you,” is one of his recent favorites. My little guy is only four, but in that moment I wonder how old he truly is. Then there are his words I replay in my head as secret mantras on rainy migraine days: “Mom, I’ve got you.” I pull that one out like an old family photo whose edges are frayed from too much handling. It stays in my heart always.

If words could heal, my migraines would have been vanquished the moment Richard learned to talk. His love is big, and the love behind his words is even bigger. He has said, “Maybe one day your head will say, ‘No more migraines!’” These wishes for me hold such a purity of spirit it resonates instantly in my gut. I’m surprised his level of belief hasn’t summoned The Blue Fairy from Pinocchio to grant his wish. His wishes may not have cured my head, but my heart has been healed a thousand times over. I can feel the truth in his words. A phrase as simple as, “Feel better,” takes on a new meaning because of its intent. Ritchie doesn’t need me to feel better so we can keep our date night or meet a work deadline. He wants me better because he knows I feel bad. His words are not just missives to placate my sickness or thrown together phrases of stuff I might want to hear. I was worried that our bond would wither away: Instead, it has flourished. Empathy is a powerful tool.

I was worried that our bond would wither away: Instead, it has flourished. Empathy is a powerful tool.

My migraines have given my kid the opportunity to practice learning empathy. This has helped him learn at a level most kids don’t have. During a recent 48-hour attack Ritchie tiptoed into the room to check on me. He quietly pulled up the blankets that had escaped to my knees all the way up to my shoulders and patted me. When I felt better later that night I swept him up into a huge hug and thanked him so much for his thoughtfulness. He smiled, proud of his actions. In a way, he has become his own instructor, translating for himself what kindness means and then sensing when his mom needs some.

My child takes this understanding everywhere. Sure, he can turn into a four-year-old and decide that sharing isn’t his bag, but when he sees a friend hurting he will always help. He cheers up our family dog when she looks sad and will rescue bugs from the pool. My kid will help friends he’s just met play games and has given over his favorite foods when his best friend has run out. His kind-heartedness doesn’t just stop with me. It is just as much a part of him as my migraines are a part of me.

My daily migraines are a pain. When they first started, I tried to find the positive lesson in them. I figured there must be a reason that I was experiencing this condition. I wanted to find the reason so at least the hibachi grill torment would have meaning. As their frequency and intensity increased, I couldn’t find anything of value in them. What’s the benefit in pure pain? Not much—was my conclusion. I would never have imagined anything positive coming out of these migraines. Then I had my son.

I would never have imagined anything positive coming out of these migraines. Then I had my son.

“I know this is hard.” Like a tiny fortune-teller with a crystal ball to my heart, Richard has managed to find the perfect words for me.

I’m amazed by my four-year-old. His ability to see me without all that adult pity and judgment is a wonder. His empathy continues to flourish, and our bond continues to grow. In his eyes, there is nothing broken about me. In my son’s eyes I am whole.

There are days I still try to give meaning to my pain and learn a lesson. I’m still doing a poor job; however my son seems to have mastered a valuable one. Empathy is a quality that some struggle with all of their lives, and witnessing it first hand solidifies how powerful a virtue it truly it is. My kid has pulled out a life lesson from my migraines that I’m happy to give him. He’s doing a better job at learning something than I ever did. Perhaps this is the better of part of parenting—teaching him the lessons I could never learn.

Chronic Pain Essays

Because Of Migraines, I Don’t Do Stuff

But hey, stuff is overrated anyway.

I don’t do stuff anymore.

Do I want to go to the special one-time-only movie screening? Yes, but I don’t do stuff.

Concert tickets? I would, but I don’t do stuff.

Check out the Renaissance Fair that is spread out over a mile of uneven ground? I just laughed so hard that I had to sit down and catch my breath.

Why don’t I do stuff? It’s simple.

A few years ago, the migraines that had been plaguing me since the age of twelve became chronic. That means at least fifteen migraine days a month. My record is twenty-two.

I’m not sure how long ago things got this bad. Between the brain fog and the sameness of days spent on the couch, the past decade is a blur. And stuff is a thing of the past.

I used to work full-time. I had so much energy that for a week in my twenties, I decided that I could save time by jogging everywhere in the office rather than walking. (I stopped when I realized that people probably thought I was running to the bathroom.) I used to hike and climb mountains for fun.

Now I wear a fitness tracker to make sure I don’t take too many steps: more than 3,000, and I end up at risk of a migraine. I walk to my chiropractor’s office two blocks away and exceed my quota before I get home. If I don’t rest for an hour or so afterwards, I’ll spend the entire afternoon in bed. When I hit my limit on the way to the car, I stop and tell my husband to go on ahead and pick me up.

Every migraineur has different triggers. For me, it’s overexertion, strong smells, certain foods, loud noise, weather, anger, frustration…you get the idea. Basically, going outside is my trigger.

Basically, going outside is my trigger.

Go to a backyard cookout, and the cacophony of toddlers and the smells of the barbecue alone will guarantee that I’m out of commission the next day.

I once went to a roaring twenties-themed party even though staying out past my bedtime would probably give me a migraine in the morning. The live band five feet away from the dance floor summoned the migraine fairy while I was still trying to Charleston.

I’ve had to beg my building’s super to dilute the floor cleaner so that I could leave my apartment without having to turn right back around for a pill and an ice pack.

I enjoy going to networking events, but all that standing and socializing guarantees agony the next day.

I love all my best and dearest, but I’m simply not going to risk crushing pain to see you perform with your improv troupe.

And forget about anything that requires buying an advance ticket. I can never be sure if I’ll be up to it. Pushing myself is an option, but a stupid one. The last time I tried that, I ended up watching The Hours, and wondering whether it was the quality of the movie or merely attending it that had given me a migraine.

I don’t make plans anymore because it fills me with stress and anxiety—two more of my migraine triggers.

Some migraines are mild enough that I can soldier on. But sometimes just shifting position in bed makes the pain worse, so showering and getting dressed are out of the question. I’ve missed baptisms, school plays, holiday dinners, and even a Doctor Who viewing party that was held in my apartment…. All because of migraines.

My friends and family understand when I have to cancel when they’ve invited me out, but I don’t make plans anymore because it fills me with stress and anxiety—two more of my migraine triggers.

Not that I’m a hermit. My husband and I go out spontaneously when I’m feeling up to it. We invite friends over for dinner and even the occasional party. I may have to spend the entire time on the couch with an ice pack on my forehead, but as long as people come to me, I can usually manage.

And when they can’t come to me, I head on out to Facebook or Twitter to see who’s around. Join enough online support groups and you’ll always find someone else who’s at home and online on a Saturday night.

Accepting my limitations isn’t the same as giving up. I’m meeting myself where I am today – a concept I learned back when I did yoga

Sometimes, people–even fellow migraine sufferers–accuse me of giving up by not making more plans, and consequently, risking more migraines. And sure, going shopping or dancing or whatever is a great bonding experience. But what’s wrong with a phone call? Or a conversation via Facebook Messenger? Or a video chat?

Accepting my limitations isn’t the same as giving up. I’m meeting myself where I am today – a concept I learned back when I did yoga. Thanks to a car accident when I was 11, I’ve had to tell more than one yoga teacher that, “My knees don’t do that.” But my long-suffering kneesies did what they could. And so do I.

Creative Commons photo by Davide Buncuga.

Advice Chronic Pain Explainers

How To Create A Chronic Pain Journal (And Why You Should Start One)

To beat your pain, you need to understand your pain. That's why spending just 5 minutes a day writing can be your most effective tool in fighting chronic pain.

I considered creating a pain journal for quite some time before actually starting one.

Before that, I always just pushed through my pain, and I suppose a part of me just hoped that it would eventually go away. After 19 years, though, what got me to start my first pain journal was the sudden realization about how little I actually knew about my pain when meeting my new rheumatologist. She asked me questions, while I was able to describe my symptoms very well, I knew shockingly little about the myriad other factors that could be influencing my pain, from diet to exercise and beyond. Then and there, I decided I need to know more precisely what was going on with my body so that I could collaborate better with my medical team.

Since I started my chronic pain journal, I’ve found the process helpful in other ways. I’m more aware of my pain in the moment, which helps me contextualize it better, as well as better appreciate the moments I’m not in pain. It has motivated me to take better care of myself by exercising or drinking more water, because I can quantify that I am less likely to be in severe pain if I do these things. Finally, having a written record of my pain allows me to better work with my doctor to aid in diagnosis as well as pain management, by allowing me to track exactly how well my medications are working.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it. Here are some of my tips for getting started with a pain journal of your own.

If you, like me, are in chronic pain, one of the best things you can do is start tracking it.

What You Need

A pen and paper. Any notebook will do. If you are proficient at Word or Excel, you can also make pages that you can print out and place wherever you will do your regular recording. It doesn’t matter if you’re using a Moleskine or a stack of looseleaf paper: the important thing is to create a journal that you can take anywhere and that you’re comfortable using.

What You’ll Track

The following are the basic questions that any journal needs to be able to quantifiably track:

What hurts? The part or parts of your body that are currently hurting, identified as specifically as possible. While I experience pain in many parts of my body, I chose to track the worst three locations: my hands, feet, and neck. I suggest starting with three or less to make it easier to stay motivated.

When does it hurt? Here, you want to list where you were, what time it was, and what you might have been doing when the pain started.

How bad is the pain? You need a standardized measurement for pain so that you can see patterns over time. You could choose a very simple scale like “no/yes” or “none/some/a lot.” I chose to use the standard pain scale of 0-10 because I want to demonstrate more nuance than a shorter scale would allow. It is important to note that “no pain” is just as important to register as “a lot of pain,” because this will help you consider what is different about that day why the pain is gone.

A close-up look at my chronic pain journal.

How Often You Should Track?

At least daily. Habit research tells us that we are more likely to complete a task if done daily than when we skip days. But more is better. In my case, because I know that I have a rhythm to my pain throughout the day, I decided to track it several times per day, morning, afternoon, and night (although sometimes I fill in all of those points at the same time before bed).

Other Data To Track

Once you’ve gotten used to tracking your pain for a month or two in a very basic journal, you can start customizing your journal to your experience.

For example, I added a “comments” section under my pain scale, as well as more data points, measuring: activity level (measured from 0-3), exercise, medications or treatments I was currently trying, and hydration (measured by poor/average/good)

Activity Level — measured on a scale from 0-3 (3 being the highest)

Exercise – type/duration (for me, this is differentiated from activity level because it is focused time set aside for exercise and usually includes stretching)

Medications – type

Treatment – type

Hydration – measured by poor/average/good

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting with what works for you, and what information you find useful!

Everyone’s pain is different, so your journal will likely be different from mine. Keep experimenting.

Stick With It!

A chronic pain journal is only useful if you use it consistently, but consistency can be hard to establish. I suggest you put your journal in a regular place, and tie your habit of logging your pain for the day with another habit you’ve already established: for example, if you take medications at a particular time every day, put your journal near your medicine and commit to tracking your pain at the same time as you take your pills.

Conclusion

Pain is exhausting, and sometimes the idea of adding one more thing to your to-do list when you are worn down feels devastating. But a chronic pain journal is a small commitment that anyone can make to try to get to the bottom of their pain for once and all. Don’t be hard on yourself if you miss a day or two: it’ll be okay, just pick it back up when you can. Some data is always going to be better than no data, so anything you can write down will help in the broader battle against pain. Think of your journal as one small thing you can do to try to understand your pain and use it as motivation to try new ways to lessen its burden.

Chronic Illness Chronic Pain Essays

My Son Gave Me A Kidney. He Has Been Chronically Ill Ever Since.

I'll probably never know if he got sick because he donated an organ to me, but after years of soul-searching, I'm determined not to let his kidney go to waste.

On May 15th, 2007, my 22-year-old son, Dylan, saved my life.

He donated a kidney to me.

It wasn’t my first kidney transplant. In 1993, over the span of three days, my renal function plummeted to 3 percent, leaving me in dire need of a new kidney. After what seemed like endless tests, I was diagnosed with ERSD, End Stage Renal Disease. But after surviving 5 years on hemodialysis, then spending 8 wonderful years with my first transplanted kidney, I became gravely ill again. For some unknown reason, my body rejected my anti-rejection medications I’d been taking for so long. By the time my symptoms appeared, it was too late to save my kidney.

My youngest son, Dylan, sat beside me on my hospital bed. At 6’3”, he was like a giant as he wrapped his arms around my frail body, enveloping me in hope and love. “Mom, I want to test to be your donor,” he said.

Doctors assured us he would be fine living with one kidney. After much discussion, the tests were administered, and he was a perfect match. On May 15th, 2007, Dylan and I were wheeled, side by side, on gurneys down the long, lackluster hospital hallways to our individual operating rooms.

And just like that, my life became mine again, thanks to my son’s gift.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

It’s been 11 years since my son gave me his kidney and I remain healthy, living a normal and happy life. But I can’t say the same for my son.

Weeks after surgery, he began experiencing excruciating joint inflammation leaving him unable to walk or care for himself. He was initially diagnosed with gout. His rheumatologist prescribed several medications, but the results were abysmal.

He has since been diagnosed with fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. Additionally, due to the intense pain and crippling flares these conditions present, he quickly became addicted to his pain medications, presenting another challenge to overcome.

His chronic pain left him broken in spirit,  and a prisoner in his home. Since he could no longer work or party, his friends disappeared.

I couldn’t help but wonder if this was due to him donating a kidney to me.

There are no definitive answers for us as to whether organ donation caused his illnesses or made his body more susceptible to them. Studies indicate some donors may be more prone to developing ESRD than others but even those results are not conclusive. Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago says: “The consequences of organ donation might not be apparent for decades — and the risks are not the same for everyone. Young or minority donors have a higher rate of kidney failure than the general population.”

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

I felt heartbroken watching my son, the person who saved my life, walking around my home barefoot with a cane. He was unable to wear shoes or slippers due to the inflammation in his feet. It was ironic, because thanks to him I could walk and hike for miles again… just not with him, as I longed to do.

So maybe the sudden onset of his illnesses were brought on by kidney donation, or maybe it was all a coincidence. As Dylan’s mother, though, I couldn’t help but feel guilty either way.

As my son suffered, my guilt grew, because the reality was I was feeling better than I had in a long time. So I temporarily moved in with him, helping with every aspect of his daily routine: going to the bathroom, getting himself into his shower chair, helping him dress, get in and out of bed, and so on..

Mary McLaurine and her son, Dylan, who donated a kidney to her 11 years ago.

As a mother, and the person for whom he had (perhaps) sacrificed his health for, all I wanted was to help Dylan get better. But nothing worked entirely, and even when it did work, the side effects added new wrinkles to his suffering. For example, ome steroidal medications helped with his inflammation and pain, but led to sudden mood swings, uncomfortable boating, and persistent nausea.

He knew I blamed myself for his debilitating illnesses, and the guilt was eating me alive. I did my best not to burden him with my self-blame, but it was impossible for him not to notice, at least a little, the tears that would sometimes fill my eyes as I saw him suffer.

How could I not blame myself?

One quiet morning, when he finally noticed my tears, we sat down and talked. He let me off the hook. He told me he never regretted his decision and would do it again tomorrow. But what he said next was profound.

“Mom, I gave you this kidney because I love you, you gave me life, brought me into this world and I wanted to give you that same gift back. We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life. And that life will be ruined if you keep carrying this guilt with you, because the doctors have told you that stress can injure your already compromised immune system. Don’t let my kidney go to waste. The best thing you can do to help me get well is allowing me to witness you living your life to the fullest! Joy is good for my soul, and yours.”

“We may never know if the transplant is the reason for my chronic illness, but we do know it has given you a new and wonderful life… Don’t let my kidney go to waste.”

I realized he was right. From that moment on, I tried to focus on my gratitude, not my guilt. Some days were still hard, and  I could feel the guilt rise in my throat like a poison trying to escape, but then I would try to recenter myself, remembering that regardless of whether or not giving me his kidney had caused his health woes, I still couldn’t let it go to waste.

And as my attitude changed, it had a positive impact on my son too. We were now linked, he and I, by the kidney that he had given me. In a way, we both shared a body, and as my guilt went into remission, Dylan began responding positively to new medications. His activity levels spiked, and he was able to get off opioids. His arthritic flares have calmed, and we are optimistic things will continue to get better. Changing to a healthier diet, and routinely exercising has allowed him to get out and do routine shopping, outdoor activities, and even socialize with friends.

Watching Dylan’s health spring back has helped further alleviate some of the guilt pangs that surface in me from time to time. And every year, on May 15th, my son and I celebrate our lives, his monumental decision to donate life to me and my unwavering appreciation and gratitude for his generosity and love. We don’t look back anymore. We move ever forward.

He is my hero.

Creative Common photo by Helen Taylor.

Chronic Pain Diabetes Health & Fitness

The Bionic Man Of Coronado Beach

Despite his severe arthritis, extreme athlete David Nonemacher refuses to back down from a challenge.

It’s a beautiful summer day on Coronado Beach in San Diego, Calif., and a crowd has formed to watch a muscular man perform a series of extreme calisthenics. As David Nonemacher balances himself on the parallel bars, his powerful arms steady both his own 218-pound physique, and that of his 129-pound girlfriend and personal trainer, Laura Novack, who lies atop Nonemacher, her arms wrapped tightly around his torso.

While it’s an impressive display of strength for anyone, it’s even more so for Nonemacher, who is essentially a real-life bionic man. As the result of numerous injuries and osteoarthritis, the 36-year-old Southern California native has undergone a full titanium hip replacement, partial femur replacement, and reconstructive surgery on both wrists.

A former pro rollerblader, skier, and avid football and baseball player, Nonemacher’s body has taken a beating throughout the years. He’s broken his right wrist four times and undergone five surgeries to repair his injuries. His hip, initially injured while playing beach volleyball, led to arthritis pain and subsequent hip replacement surgery. And while Nonemacher says there may be a genetic component to his arthritis, he admits his intense love of athletics combined with a sense of impatience haven’t made things easier.

“I’ve cut my casts off every single time I’ve had one,” Nonemacher says. “I know that’s not being a good role model, but I’ve never had a cast actually removed by a doctor.”

In his defense, having a wrist cast can be cumbersome for someone who makes their living as a metal artist and fabricator. On any given day, Nonemacher can be found in his San Diego-studio, Nonemacher Designs, welding custom metal sculptures that have been commissioned by businesses and private clients. As a metal fabricator, he has manufactured projects ranging from a delicate artistic metal flower to calisthenics equipment such as paralletes, small gymnastics devices used to simulate parallel bars.

Despite hip dysplasia and osteoarthritis, David Nonemacher clearly has some great genes.

From Arthritis To Bionic

Although Nonemacher had experienced pain and stiffness in his joints since he was a teen, it wasn’t until 2012 that he was officially diagnosed with degenerative osteoarthritis and hip dysplasia.

“I went through many cortisone injections but they only offered limited relief,” Nonemacher says. “In 2013, my doctor told me I needed to undergo hip replacement surgery.”

Rather than choosing to give up his athletics, the diagnosis inspired Nonemacher and motivated him to lead a healthier lifestyle, and he began to take a closer look at both his diet and exercise regimen.

“Staying active is very important because it keeps my joints loose and reduces pain,” Nonemacher says. “Mornings can be tough as I wake up with my hand clasped shut, and rely on heat and flexing exercises to get moving.”

“Being sedentary is hard on my body and mind. Regular movement helps me to maintain joint function and also relieves stiffness and decreases pain.”

Yet rather than give in to the pain, Nonemacher says having arthritis motivates him to stay physically fit.

“Being sedentary is hard on my body and mind,” he says. “Regular movement helps me to maintain joint function and also relieves stiffness and decreases pain.”

In addition to regular exercise, Nonemacher maintains a healthy diet, blending smoothies in the morning made from fruit, vegetables, and protein powder, enjoying a vegan burger for lunch and then pasta for dinner.

Some bionic wall-climbing.

From Triathlons to Extreme Calisthenics

Wanting to raise awareness of arthritis and funding for research, Nonemacher joined the Arthritis National Research Foundation (ANRF) Racing for a Cure team in 2013 and raced with them for four years.

As part of the ANRF team, Nonemacher raised money for arthritis research by participating in races, and also hoped to inspire others with arthritis to stay active. He continues to support them by doing one race each year.

“I’ve read a lot of stories about people with arthritis and their stories have inspired me,” Nonemacher says. “I hope that by sharing my story, I can inspire others in the same way.”

One of Nonemacher’s greatest accomplishments with ANRF has been competing in the Escape from Alcatraz triathlon, held in San Francisco. This annual event features a 1.5-mile swim from Alcatraz Island (home of the famous prison), to the shores of San Francisco, an 18-mile bike ride, and an eight-mile run. This triathlon is considered one of the most difficult in the world. Nonemacher has also competed in triathlon and Ironman events,

Over the years, as Nonemacher’s arthritis pain has progressed, he’s changed his exercise routine to include activities that are lower impact.

I’ve read a lot of stories about people with arthritis and their stories have inspired me. I hope I can inspire others in the same way.

“I don’t run anymore except on the sand since it’s a softer surface and also acts as a shock absorbent,” he says. “Even then, I’ll run a mile at most.”

Living in San Diego, the beach is a favorite venue for Nonemacher and a place where he enjoys one of his most therapeutic pursuits: surfing.

“After my hip replacement, my doctors told me I should give up surfing,” Nonemacher says. “But being out on the ocean and catching the waves is therapy for me. I can’t give that up.”

Nonemacher has treaded in triathlons for bodybuilding, gymnastics and calisthenics, which allows him to remain active and maintain strength while putting less impact on his joints. He hopes that being candid about his arthritis will inspire others to find an exercise regimen they enjoy and can stick with—whether that’s walking, swimming or trying new challenges like he did.

“I do listen to my body and know how far I can push myself,” Nonemacher admits. “I look at my arthritis as just another obstacle in life that I need to overcome.”

Chronic Illness Chronic Pain Profiles

Agent Lupus in the F.B.I.

As an FBI agent, Shahna Richman was trained to handle everything from bank robbers to serial killers, but it never prepared her for lupus.

Shahna Richman wasn’t diagnosed with lupus until she was 29, but it explained so much. “Just odd childhood things,” she says, now 48, a private forensic and security consultant in Evanston, IL. Things her family explained away with “Shahna has a nervous stomach,” or “Shahna is prone to sun rash.” During her sophomore year of college, she got mono and pneumonia simultaneously, and also found out she was severely anemic.

Later, as a police officer in New Haven, CT, the ailments piled up: Richman was diagnosed with hepatitis, thought to be caused by an errant syringe. And one day, her eyes turned bright red, which her doctors thought must have been caused by a fire extinguisher she had used to put out a car fire two days previously. “Now I know it’s part of iritus,” she says, a painful inflammation of the eyes that can accompany lupus.

Richman suspects lupus may have also been behind her many joint blowouts and broken bones after the years. After being admitted to the FBI in 1996, at a training session in Quantico, the 5’2”, 115-lb Richman (the second smallest person in class) was ordered to wrestle a 6’6”, 300-lb pound man (the second largest person in class.) “I had him in a choke hold and he just stood up swinging. It was humorous, but I went flying.” Richman dislocated her shoulder. “One of the instructors I was friendly with put me against the wall and was like chck,” she says, imitating the sound her shoulder made when it was popped back in its socket. “They pumped me full of cortisone and I was good to go.”

Shahna Richman trained to be an FBI agent for years, but she never planned for lupus.

It was, of all things, a suspected windburn that got Richman her diagnosis. As a road racer, she was used to facial redness, but one day at work, she developed a butterfly, or malar rash, which worsened as the day went on, despite the fact that she was indoors at the FBI Rolling Meadows satellite office outside Chicago. The rash grew bumpy and thick, to the point where one of her co-workers insisted on driving her to an allergist.

Paul Detjen administered epinephrine but Richman’s symptoms made him think to run a test for systemic lupus. “I’d never heard of it before, and it was off the charts,” Richman says.

The way she explains it to people unfamiliar with lupus, Richman’s immune system is like “putting 100 preschoolers in a room with nothing to do and watching what happens to the stuff in the room: they’ll destroy it.”

The way she explains it to people unfamiliar with lupus, Richman’s immune system is like “putting 100 preschoolers in a room with nothing to do and watching what happens to the stuff in the room: they’ll destroy it.” Her lupus is a form of super-immunity that affects her entire body and will destroy it if left unchecked.

Armed with the diagnosis, Richman better understood what could trigger her symptoms so that she could attempt to manage her health and her job. Light, for instance. She had risen high enough through the FBI ranks to earn her own office—one with UV lights over her desk. “I was getting sick every day and I couldn’t figure it out because I’m a dummy,” Richman says, acknowledging the irony of a trained FBI agent getting taken down by the wrong light bulb. “Then I got a desk lamp and I started feeling better.”


Stress is another trigger. Richman worked in VCMO, which stands for violent crimes major offenders. “My squad handled bank robbery, fugitives, serial murderers, kidnapping, and the internet exploitation of children,” Richman says. In 2001, she worked on the Shanksville 9/11 plane crash site, identifying remains by their tattoos. “Everything I worked in is just a big pile of PTSD,” Richman says.

Her pride in her work kept her struggling to balance her illness with the stress. “As far back as college I had an interest in the FBI,” she says. After getting her undergrad degree at the University of New Hampshire, she pursued a masters in forensic pathology at Yale while working as a police officer, all the while aiming for the FBI. “They accepted one out of every 5,000 qualified applicants back then,” she says. “But I was always of the mindset, ‘Why not me?’”

Finally getting to the FBI was a thrill. “We do wear suits. We do flip open those credentials,” Richman says. “It is an incredible feeling when you’re a new agent, to knock on someone’s door and say ‘FBI, Special Agent Shahna Richman: you’re under arrest.’”

“It is an incredible feeling when you’re a new agent, to knock on someone’s door and say ‘FBI, Special Agent Shahna Richman: you’re under arrest.’”

Her proudest moment as an agent came in 2006 when Richman, after doggedly working the case on her own, saw to the conviction of three skinheads who terrorized a black family in Fox Lake. “Those victims were children. Their families were so deeply affected by the case,” says Richman. “In any other case I worked, I never felt a greater sense of justice.”

No matter how dark, violent, or depressing the case, nothing compared to the struggle that was managing and concealing Richman’s lupus. This was fairly simple at first. “When one medicine would stop working or I’d develop an allergic reaction, we’d move onto the next one,” she says. In the meantime, in the years before automated computer systems, she could reschedule gun range dates if her arthritis made her hands feel too stiff. Richman’s best friend in the bureau, who knew she had lupus, took care with her during defensive training sessions, aware that Richman was especially fragile after high doses of prednisone: “It has eaten my bones.”

Richman told herself that she was physically able to do her job, but she says she knew it was a lie – an exhausting one.  “I remember walking around the office, smiling, then going to the bathroom and shutting the stall, taking that plaster smile off my face and that relief of, ‘I can just stand in this bathroom for five 5 minutes and just be, instead of having to hide who I really [am].’”

She experienced some relief with Rituxan, a chemotherapy drug commonly used for the treatment of lymphoma, but couldn’t escape its side effects. “I distinctly remember being in an interview with a custodial subject with another agent, but I had to excuse myself from the room very quickly, run down the hall, and I had to vomit in a trashcan in the bathroom. I washed my mouth out, popped some gum, went straight back into the interview room like nothing was wrong.” It was a low point. She realized that her disease wasn’t just affecting herself; it was affecting her job and her co-workers.

Why did she put herself through all this? Richman says simply: “Because I wanted to be an FBI agent. “

Why did she put herself through all this? Richman says simply: “Because I wanted to be an FBI agent. “

Ultimately Richman’s hand was forced when it came to revealing her condition—her special agent in charge discovered she was on Rituxan, which he was familiar with. He asked Richman if she had cancer, and she told him the truth. She eventually learned that systemic lupus erythematosus is a disqualifying medical condition when it comes to being an FBI agent.

Shahna with her husband.

After turning down a job teaching at Quantico, Richman accepted an official medical retirement, and went on to serve as the director of security at the Illinois Holocaust Museum, as well as a private bodyguard to high profile entertainers, politicians and athletes, consultin. She is also serving as an adviser for a Chicago play about an FBI agent with PTSD (it’s based loosely on her life.) Her husband, whom she met at work in the FBI Chicago field office, continues to work as special agent, which can be painful. “If I were married to a layperson, it would be easier. It wouldn’t be in my face every day.”

Almost a decade later, Richman knows that the FBI made the right call when they retired her. Unlike other people with lupus, she has not seen any remission in the sympotoms of her disease.  “I can’t be an agent any longer. I knew that then, I know that even moreso now. Watching my health decline over the last ten years, they absolutely did the right thing.”

But she still hates not being an FBI agent. “I mourn the loss of that job every day,” she says. Her eyes get very big, and shiny. “I hate it. But they did the right thing.”

Cancer Chronic Pain Q&As

Middle School Principal Vs. Pain

Breast cancer, multiple sclerosis, osteoporosis, scoliosis, and a little disorder colloquially called "the suicide disease." This former educator turned yogi isn't letting any of them get her down

Ilona Thomson was out shopping for rugs when she felt the sensation of electric bolts shooting across her face. She didn’t know it at the time, but the retired middle school principal had trigeminal neuralgia, dubbed “the suicide disease” for its intense, stabbing electric facial pains. It’s been called the most excruciating pain known to humanity.

Ilona Thomson.

Already, Thomson, 66, had been diagnosed with multiple sclerosis. And over the last 20 years, she’s also faced osteoporosis, scoliosis and breast cancer. To heal, Thomson had to come to terms with major lifestyle changes, including cutting her career short. But she’s embraced a new life, one where she focuses on healing.

Whether it’s yoga, meditation, diet changes, or tapping – a holistic healing technique Thomson believes in, in which you tap on specific points in the body – Thomson dedicates her days to pain management. But she also finds relief and purpose in helping others. Her volunteer work at nursing homes and her local synagogue have helped her forged community connections that have spurred her to push through the pain.

Thomson talked to Folks about what it’s like to live with trigeminal neuralgia, how her conditions impacted her career, her regimen of self-care, and how visiting nursing homes with her dog Maddie to volunteer with Alzheimer’s patients helped give her perspective.

How did your health issues start?

I was in my early forties. One day I was in the shower reaching for some soap, and one of my eyes went dark. I couldn’t see at all. I was frightened. I was supposed to go away for the weekend. I went to my doctor, and he said ‘it’s nothing, it’ll be fine.’ When I got back I went to a different doctor and got an MRI. I remember one of the technicians said it could be MS, and I freaked out, because to me that meant I’d end up in a wheelchair. At the time I was working a very stressful job as an assistant principal at a middle school that had gang and drug problems. I also had three kids of my own. Further testing ended up not showing MS. I took steroids and my vision went back to 20/20. Then after a while, it happened again. I had more testing, saw a new doctor, and he said I definitely had MS.

I remember one of the technicians said it could be MS, and I freaked out, because to me that meant I’d end up in a wheelchair.

How did your diagnosis impact your career?

It wasn’t until I turned 51 that I developed every MS symptom you could imagine. I noticed it when I was writing thank you notes to parents after they gave me gifts for Chanukah. My handwriting wasn’t right. I had trouble walking. I had huge bladder problems. I just felt horrible, and I was crying all the time. I was keeping it a secret because I was very ashamed that I wasn’t functioning.

At that point, I’d worked my way up to principal. My doctor said I’d feel a lot better if I stopped working. That never occurred to me. I broke down and wept. I ignored his advice and continued. Then, that summer we took our son up East to look at colleges, and I just couldn’t keep up. We got back and I decided not to go back to work. That was a very painful chapter. I was devastated about my job and career and health and felt very weak. I dedicated myself to self-care – eating well, exercising – and got my MS symptoms under control. Then, I started having strange pains in my face. It was trigeminal neuralgia.

What does trigeminal neuralgia feel like?

It’s the worst pain in the world. It started slowly. It felt weird in my mouth. I went to the dentist to see if maybe I had a chipped tooth. He said nothing’s wrong, but sent me to a specialist, and he also didn’t see anything. One day I was out shopping for rugs for my house, and the pain was worse. Then, it became unbearable. My husband took me to the ER because I couldn’t even spit without pain. I couldn’t even move. It’s like electric bolts. It came and went. One weekend, I was visiting one of my children in New Orleans, I was at dinner with her and a friend and I’d periodically have to stop talking. At home, if I was on the phone and it came on, I’d have to hang up. It started to become incredibly invasive. I know people with trigeminal neuralgia who practically have to stop eating. It really is horrible. I don’t know why the body sometimes turns on itself and goes so awry, but it does. It’s hard that there are so few answers.

How have you coped with what’s been called the “suicide disease”?

Medication helped, but eventually, I started looking for an alternative treatment. I tried a treatment where I wore a gigantic device around my head – the doctors said it would cure it, but it didn’t work. Then, I came across a doctor in Cincinnati who performs a procedure called a rhizotomy. They put a little wire through your cheek, locate the source of the pain, and basically fry the nerve. At first I said, “I’m never doing that.” But then I changed my mind. It’s very painful. You have to be awake. It was like being in a torture experiment. I was screaming. But then your face is numb, and you feel a lot better. Half my face is numb now, but you can’t tell. I started to wean myself off medication. I still have residual pain, especially at night, and I take some medication. I also meditate every day. I’ve done tapping. I’m very open to alternative treatments.

How has taking charge of your health and well-being helped?

On top of everything, I was also diagnosed with breast cancer. But, I was lucky. It was stage zero and discovered right away. It was a lot to handle though. I have a lot of motivation to try to be well. I have my children, my grandchildren. I have so much to be grateful for.

I have a lot of motivation to try to be well. I have my children, my grandchildren. I have so much to be grateful for.

I try to make decisions that are healthy for me and I’m open to anything. I started to do a lot of things that made me feel whole again. I started an MS yoga class. I changed my diet. I do yoga. I went to a Buddhist temple to learn meditation. I embraced my new life. I wrote out a schedule for myself: meditate, yoga, practice the piano. I also got bat mitzvahed. I became a board member at my synagogue. My community is very nourishing to me. I read a book about a woman with MS who was in even worse shape than me who found relief in volunteering. So, I decided to volunteer at nursing homes with my dog Maddie. I took her for training and had to take some night classes. It was very healing.

After all these years, everything I’ve been through, and the people I’ve met along the way, I keep coming back to the fact that we all have our issues. You really just have to be a warrior, and you have to learn a lot of self-care. That’s how you can prevail.