Posts

Disability

5 Cutting-Edge Tech Products That Could Change The Lives Of The Disabled In 2019

From robot gloves that help people with cerebral palsy, to glasses that let disabled people see what's happening hundreds of miles away, these CES tech breakthroughs could change the lives of disabled people everywhere.

Many of the newest smart designs invoke worlds of possibility—and they’re on their way to our homes.

Held in Las Vegas in 2019, the annual CES (Consumer Electronics Show) provided an international stage for showcasing the latest in technical innovation, with 4,500 exhibitions from around the world.

Since its inception fifty years ago, more than 700,000 new products have launched at CES.

This year, 524 exhibitors demonstrated new products in the ‘health’ category—but it’s not just those designated as health that could revolutionize life for people with chronic illness and disabilities.

Here are five

Ergomotion/iOBED Contour Bed

The Erogomotion/iOBED Contour Bed automatically adjusts itself throughout the night to help people with chronic pain sleep soundly.

What it is: A collaboration between adjustable bed makers Ergomotion and iOBED—the creators of technology that senses users’ individual bodies and sleep patterns—has resulted in a bed that monitors your sleep and adjusts accordingly. The mattress is made up of 80 individual air cells and 8 independently controlled zones, meaning it has infinite potential to detect and alleviate things like uncomfortable bed height, firmness, pressure and pain—all while you’re (hopefully) sound asleep. It can also be adjusted via your smartphone, or voice activation.

Why we’re excited: Insomnia and health issues go hand in hand, whether it’s caused by chronic pain, medication side effects, or anxiety. For the chronically ill or disabled, then, any technology that can help sleep better is welcome. For people with fibromyalgia and rheumatoid arthritis, for example, the Ergomotion Contour Bed will counteract pressure that could cause further discomfort in sore bones, muscles and joints, or even prevent bedsores.

Foldimate

What it is: The Foldimate uses robotic technology to individually assess and fold your clothes as you feed them in. It has unlimited capacity, continuously folding while items are added. It’s not available on the public market yet, but it’s only a matter of time before this technology spreads.

Why we’re excited: With disability, it’s always the smallest things that can cause the most helplessness and frustration. Folding laundry might not seem like a big lift for people in good health, but it uses muscles and joints that can make the chore tortuous for people with chronic pain, and inaccessible for those with reduced mobility. And let’s face it: when your whole life can feel out-of-order, there’s psychological benefits to being able to wear freshly pressed and folded clothes.

 

Tikaway Connected Glasses

The Tikaway Connected Glasses can give housebound people eyes anywhere.

What it is: Tikaway allows users to share what they’re seeing, or view things remotely. Tikaway’s Connected Glasses can record what the wearer sees, or broadcast it live. Viewers can guide the wearer in real time, from wherever they might be.

Why we’re excited: This has huge potential for people with accessibility challenges, both professionally and personally. Chronically ill people working from home can attend critical on-site meetings, or go on vacations that they might otherwise not be able to take because of their health, addressing the isolation and loneliness that can often accompany illness and disability.

NeoMano Robot Glove

The Neomano Glove allows people with cerebral palsy or paralysis issues grip things they otherwise couldn’t.

What it is: This robotic glove enables people who have difficulty using their hands to firmly close their fingers, allowing them to more easily grip and pick things up. The portable glove is soft and fits over the user’s index, middle finger and thumb. A single press on a Bluetooth controller activates the titanium wires inside, closing the wearer’s hand. This simple motion means users can grip utensils, twist open bottles, turn pages and hold pens, and open doors.

Why we’re excitedThe glove could help people with multiple sclerosis, cerebral palsy, Lou Gehrig disease, or spinal cord injuries, or those recovering from a stroke. Being able to pick up and grip tools is something many of us take for granted, and is a vital part of feeling independent. The glove would mean users being able to get dressed, feed themselves, and take part in work that might otherwise be inaccessible.

AWARE Accessible Wayfinding App

The AWARE app allows people with visual impairment issues to interact with virtual beacons spread through the world.

What it is: The AWARE Accessible Wayfinding App from Sensible Innovations basically fills the world with signs that you hear, but don’t see. By using this app, these virtual beacons allow visually impaired people to more fully experience their surroundings, and navigate public spaces in realtime. And it’s not moonshot technology: the app integrates with existing beacon technology (like the technology Apple Stores use to alert you on your phone when it’s your turn at a Genius Bar) and use Bluetooth to provide audio-location information in places like city centers and on public transport.

Why we’re excited: We’re excited by anything that opens up the world for people with visual impairment and allows them to explore the world more easily. For example, when someone using the app nears a bus stop, they’re given the schedule and route information, guided onto the bus, and alerted as the bus approaches each new stop.

 

 

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.

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 Pain Essays

How Being A Patient Taught Me To Be A Better Mom

Spending 18 months in doctor's offices may not have gotten me a diagnosis, but it has taught me patience with my kids and myself.

“Seriously, Mom, what do you even do all day?”

My twelve-year-old daughter—a teen in the throes of a hormonal surge—was accusing me of being lazy: a stereotypical useless housewife, sitting on the couch all day watching television while stuffing my face with Bonbons. The issue of contention? A missing pair of leggings, which she accused me of having lost.

In the past I would have reacted with anger, defending my stay-at-home mom status by spewing a list of quotidian tasks I am forced to complete for her and her brother on a daily basis: grocery shopping, cleaning the toilet, and so on. Then, a battle would ensue: she’d sarcastically express disbelief, I’d blow up and tell her she was an ingrate, she’d storm off, and then I’d feel like an awful mom.

No fun. So this time, I tried something different.

I said: “I have an idea. Tomorrow I won’t clean your room, grocery shop, or wash your clothes.” I flashed her a mischievous smile. “Let’s see if you can notice a difference. ”

She was stymied. I walked off with a wink. I’d be lying if I said I wasn’t proud of myself.

The last eighteen months which I have spent as a patient may not have given me a diagnosis, but it sure has taught me a lot about parenting.

The last eighteen months which I have spent as a patient may not have given me a diagnosis, but it sure has taught me a lot about parenting.

Twelve years ago, while pregnant with twins, I read What to Expect When Expecting and The Happiest Baby on the Block in preparation for being a “perfect mother.” After my kids were born, though, perfection seemed forever out of reach. My newborns cried incessantly, and in my frustration, I berated myself for being horrible. I think that set a pattern: as my children grew, I internalized the criticisms I had of myself as a parent and caregiver, which in turn, caused me to react to them with frustration.

It wasn’t until I experienced chronic pain that my beliefs about what I was capable of as a parent–and, for that matter, my parenting skills–began to shift.

Several years back, I began experiencing chronic pain in my right calf muscle.  The first orthopedic surgeon I saw said, “I don’t know why you are having pain. It’s weird. A muscle strain should have healed by now even with exercise. Plus the pain doesn’t get worse when you do exercise.”

That word–weird–stood out to me. Was ‘weird’ a medical term? I asked myself. It seemed odd that a doctor–someone we go to for neat and tidy answers–would use such a word.

After the appointment, I went home. My daughter was rifling through her room, looking for her misplaced headphones. Her tone was accusatory: “Mom, where did you put my Beats?”

The implication of her question was apparent. In the past, I would have been swallowed by self-doubt. Did I move her headphones? I’d wonder. Then I’d have torn the house apart looking for the missing item, all to try to prove to myself that I wasn’t the world’s worst mother.

Instead, that word weird stuck out in my head. I was impressed with how easily the doctor how used it, how confident and unfazed he was by the fact that he didn’t know the answer to something.

So I attempted a new approach. I responded, “I don’t know where you put the headphones. That’s weird you can’t find it.”

She looked at me with a quizzical expression and then left the room in a huff.

For the first time, I felt empowered using the word “weird.” I didn’t have control over the unknown pain in my leg, but I had maintained control over a contentious interaction with my daughter. It felt, in a way, like I’d internalized a great parenting truth: that I didn’t have to be omniscient to be good at being a mom.

It felt, in a way, like I’d internalized a great parenting truth: that I didn’t have to be omniscient to be good at being a mom.

Before my next appointment with the orthopedic surgeon, I had an MRI which showed inflammation in the calf muscle.

“I don’t see a tear or anything I could repair with surgery. I’m referring you to a rheumatologist.”

After meeting with the rheumatologist she said, “There is nothing indicating you have a rheumatological related disorder. I’m referring you an orthopedic surgeon.”

Are you kidding me? I’ve already been to two different orthopedic surgeons.

Later that day, I prepared dinner while my son sat at the kitchen table staring at his homework.

“Mom, I don’t understand how to do this math problem. Can you help me?”

I used to get As in Math class, but that was thirty years ago: I don’t remember the formulas. In the past helping my son with his homework, in fact, I’d spent hours filling up a paper with calculation after calculation, trying to re-learn Algebra from scratch. Maybe that wasn’t the best way to handle this.

I thought of the doctors with their years of training and medical specialties, referring me to someone else. I responded: “Your twin sister has the same math teacher as you, I’m going to refer you to her.”

Again, a great parenting truth. Just like good doctors recognize when they aren’t an expert on something, good moms do too. They know when to network their kids with someone else.

Two for two. I started looking for other parenting skills I could pick up from doctors.

When different specialists shuffled me around from one to another, I noticed they had something in common. They loved to order tests. I had blood tests, an ultrasound, x-rays and two different MRIs. All the doctors had no qualms admitting they needed assistance or more information or rule out a diagnosis.

I decided to apply this same principle to being a mother. Up until this point, I was under the delusion I should do everything for them. I thought being a good mother meant taking care of their every need, such as cleaning their clothes or cooking their meals.

Parenting has a lot of grey areas. It wasn’t as simple as knowing the correct answer on a multiple choice test.

During one family dinner, I made an announcement.

“I realize some of you have expressed concerns about the laundry not being completed in a timely manner, while others objected to the dinner selections, so I’m writing a detailed form about how to use the washing machine, cook dinner and do other household tasks. That’s an order: STAT.”

My message was met with befuddled stares, followed by numerous questions but in a few weeks they acquiesced to my “orders.”

Being a perfectionist enabled me to succeed in school and other areas of my life, but it didn’t help me as a mother. Parenting has a lot of grey areas. It wasn’t as simple as knowing the correct answer on a multiple choice test.

I used to think of doctors as omniscient godlike creatures. I was in awe of their ability to be admitted to medical school and preserve through their grueling residency training. Seeing their human fallible side enabled me to accept being an imperfect parent.

Being a perfect goddess, it turns out, isn’t a prerequisite for being a great mom.

Chronic Pain Essays

How Birdwatching Helps Save Me From Chronic Pain

'Peace and patience' are rare commodities when you live with pain... but a day spent birding is an extra day added to your life.

I was a sickly, underweight nine-year-old using borrowed skates in the playground when one leg went east and the other west. That dark night, deeply in shock, my hospital bed was packed with sandbags to stop me moving. Full of morphine so the shock would wear off before surgery, I was fearful of the long sleep so, to stay awake I grasped onto and befriended my pain. This strange relationship with pain and disassociation with physical reality augured a life beset with, but not defined by physical dysfunction.

Even after I was out of the hospital, I spent a year barely walking, and doctors told me that perhaps I had some underlying condition, which would turn out to be ankylosing spondylitis. Struggling to find alternatives to bed, books, and boredom, my Dad took me to the lake, where we drowned worms and watched wildlife while fish ignored our bait.

One day, quiet and still on the water’s edge, a kingfisher landed on my rod, dived for a minnow, and flew away. He left behind a birder.

Almost sixty years after that kingfisher landed on my fishing pole, I still fish a little, but my lifelong passion is birding… and in watching birds, these everyday miracles of feather and flight have helped save me from the pain, depression and tiresome routines of a life of chronic illness.

These everyday miracles of feather and flight have helped save me from the pain, depression and tiresome routines of a life of chronic illness.

For two decades now I have been defined by birds and birding; writing about birding under the name ‘Fatbirder’ (the curvature of my back may be fickle fate, but the curvature of my front is mostly overindulgence.) During that time, I have traveled the world to see new birds, and found where the developed world makes a big deal out of the cost of making things accessible, the third world uses their ingenuity. (At home, it can take a week to get a wheelchair puncture fixed and months to install a ramp, in Kenya a puncture was repaired in minutes and a ramp installed between arrival and lunch an hour later!) Those travels are recorded in my book, A~Z of Birds.

Through birding, I have come to appreciate the ‘social model’ of disability. The disease or injury you have isn’t what disables you: it’s society’s response, (or mostly lack of it) which is disabling. The advantage of this concept of disability is that it stops you from seeing yourself as the problem, or relating to the world only through your disease or injury. Pursuing that model is just and proper. Moreover, when you stop relating to the world only through its interface with your infirmity you can transcend the labels that society often applies.

For me that transcending behavior is watching birds.  One could be quite simplistic and assume it’s all about the freedom of flying that birds embody. Our earth-bound bodies seem a poor second to the three-dimensional life of birds. What we must do at rest, some birds do on the wing. Some, like Swifts, fledge and stay airborne for as long as four years eating, mating and even sleeping high in the sky. But it is so much more than this.

Our earth-bound bodies seem a poor second to the three-dimensional life of birds.

It is hard to define the magnetic attraction of observing birds. Yes, they master an element we have taken millennia to even enter. Yes, many have intrinsic beauty. Yes, their songs can transport you to a concert hall or haunt you with their sadness, and yes, many show amazing intelligence despite their tiny brains. The truth has many levels from beauty to awe, from the loyalty of life mating storks, to the super-fast voracity of a hawk or the plaintive call of a curlew on a moor. For me, it is that I become captured by their movement, haunted by their song, inspired by their jeweled or cryptic plumage. It is no one aspect, nor even all aspects, but the fact that I become lost. And in becoming lost, I lose my pain, transcend my physical restrictions and forget the daily drudgery of medication and disabled daily living.

The novelist wrote ‘I am camera’, not ‘I am a photographer’. Somewhere around twenty years ago I stopped being someone who watches birds and became ‘birder’. I watch birds, make a living through birds, write about birds, travel for birds, and  passionately defend birds against habitat destruction. Birding doesn’t just define me: it saves me from myself. It’s not only mindfulness, although doing what you enjoy definitely does you good. Bird song is the choir and nature the cathedral that define my spirituality, taking my soul where the frail body cannot go.

Birding doesn’t just define me: it saves me from myself.

In 1653, in ‘The Complete Angler’ Isaac Walton talked of Sir Henry Wotton, describing him as… ‘a most dear lover and a frequent practicer of the Art of Angling’; of which he would say, “‘Twas an employment for his idle time, which was then not idly spent, a rest to his mind, a cheerer of his spirits, a diverter of sadness, a calmer of unquiet thoughts, a moderator of passions, a procurer of contentedness;” and “that it begat habits of peace and patience in those that professed and practised it.”

All of which could be said about birding, but in spades. ‘Peace and patience’ are rare commodities when you live with pain, the daily grind of taking hours to achieve what able-bodied people can do in minutes, or the frustration of seeing what is often out of your reach. Those vicissitudes rob you of days, but a day spent birding is an extra day added to your life.

Photo provided under Creative Commons license by Flickr user coniferconifer.

Chronic Pain Essays

How Migraines Drove Me Out Of The Office, And Into My Dream Job

Self-employment was the perfect solution for my problem with chronic headaches, but it shouldn't have been my only option.

When my alarm goes off at 7:32 a.m., I slap at it while trying to dodge a blinding ray of morning sunshine.

That should get me going. Instead, I groan and try to turn away.

The light sears my sensitive eyes, and the ache in the back of my neck doesn’t so much abate as twist when I rotate my head. The inside of my skull feels raw and fuzzy like an inverted tennis ball.

My husband hears my muffled moaning in the next room and comes in to check on me. “Is it your head?” he asks, already knowing the answer and leaning down in case I’d like his help sitting up.

I do. As I sit upright for the first time, I get that initial diagnostic blood rush that helps me gauge how soon I need coffee, or ibuprofen, or something stronger to make it through the morning.

Migraines can make even the healthiest body feel aged and weak.

This particular day, the pounding subsides after about two minutes. That means it’s a good day. At this rate, I’ll be at my desk working within 30 minutes.

With my right hand on my temple to ease the throbbing, I shuffle to the bathroom and shake two pain relievers into my mouth. The tap water seems extra cold this morning as I wash down the tablets, then splash my face. I wonder if other people–people without chronic migraines–feel the same intense relief of icy water on their skin, the way it feels like it penetrates the surface, tingling with healing powers.

I head into the kitchen and hit the button on the electric teakettle to get water boiling for coffee. From there, my hand goes automatically to the refrigerator. There’s a cooling eye gel roller in the door. I smear it around my eyes and on my temples, which probably makes me look even more manic than I feel.

But mostly, I don’t feel manic. I feel tired.

Migraines can make even the healthiest body feel aged and weak.

A National Epidemic, Especially Among Women

Describing a mostly undetectable illness can also wear a person out. According to the Migraine Research Foundation, more than 38 million Americans suffer from migraine headaches. Of those, a whopping 28 million are women. It’s a fairly common condition, but talking about pain, especially invisible pain, is intrinsically linked with gender norms, no matter how enlightened you think you are. For years, I apologized for inconveniencing my friends. Even now, I’m overly grateful that my kind husband is such a supportive caretaker, simply because I’m so used to explaining away my own suffering.

I’m not alone in battling the stigma, as migraines have unusual cultural baggage. Back in 2011, then-presidential hopeful Michele Bachmann was roundly dismissed as a strong contender due to the sexist assumption she wouldn’t be able to hold higher office while suffering from debilitating headaches. Say what you will about her political positions, but women migraine sufferers are often used to defending their pain in an uncomfortably similar manner.

Talking about pain, especially invisible pain, is intrinsically linked with gender norms…

This isn’t about gendered weakness; it’s scientifically proven that women experience more pain than men.  Studies suggest that because men’s and women’s brains are different, women are more sensitive to pain, which certainly could explain why women are also the majority sufferers of conditions such as fibromyalgia and osteoarthritis, as well as migraine sufferers in far greater numbers. Women have also been shown to be more resilient when it comes to tolerating pain, though I have to wonder which came first: all this gendered pain or our ability as women to deal with it.

After nearly three decades of managing the symptoms, I can tell when a migraine is going to be easy to quash, and when I need to pop a triptan. Depending on the day and severity of my symptoms, some people might not even label my pain as a migraine; today, for example, it’s likely a run-of-the-mill headache.

But, given that I’ve had debilitating headaches since I was around 8 years old and been trying to explain them since, I don’t tend to parse the difference anymore. If I can get up and get to work, I’m grateful. That doesn’t mean I’m entirely well, or that my pain doesn’t deserve its severity label.

How Migraines Gave Me My Dream Job

For the past decade, I’ve been an independent journalist, which means I work for half a dozen publications at any given time, covering stories and topics across a range of issues. I relish the education and diversity of subject I get to cover… but I especially love that I get to set my own schedule.

That’s because, as a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me, who can experience extreme torment at the drop of a hat. When I experience an attack, I have to quickly deal with any number of symptoms, ranging from projectile vomiting to extreme sensitivity to sound and light.

As a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me…

Being a freelancer is a lot like being a perpetual student. There are constant deadlines and little resembling a traditional  workday schedule. (Going out with fellow freelancers during the week is like the study group part of adulthood.) I love the unpredictability and often late hours, and I’m extremely fortunate to be so well suited to my profession. Some of the sting of freelancing is also taken out of my situation thanks to the fact that my partner’s job provides me with reliable health insurance.

I’ve always been entrepreneurial by nature. During graduate school, I had several jobs—in upscale restaurants and university offices—that helped cement my desire to figure out how to be as professionally self-sufficient as possible. In each of them, my migraines helped quickly drive me from the job.

In one administrative position, the office’s overhead fluorescent light panels often made me ill, or at least threatened to do me in. I’d be fine for weeks at a time, and then, due to some unknown trigger, the lights would do me in, and the migraine symptoms would suddenly show up. I’d have to ask to go home sick in the middle of the afternoon, helplessly trying to explain that, like Cinderella at 11:15pm, I was just 45 minutes away from a complete breakdown. “You see, I can already tell that if I don’t get to bed now, I’ll be blindly throwing up in the ladies room in less than an hour.” Talk about oversharing… but how can you discuss a sickness you can’t see if you don’t overshare?

But there are worse things than managers that don’t understand. After going home with a migraine at a high-end waitressing job, my paternalistic boss decided I didn’t need to come in the next morning.

How can you discuss a sickness you can’t see if you don’t overshare?

“You should rest,” he insisted, and took me off the schedule even though I was well enough to go in, and needed the money.

“I’ve had migraines. I know how they are,” he said as if I didn’t know the same.

It wasn’t long after that I swore I’d find ways to not be reliant on people like him, who both seemingly cared but ultimately robbed me of the one thing a job is supposed to be about: making a living.

gustavo

Photo: Gustavo Devito

 

But Self-Employment Shouldn’t Be The Only Solution

Illness and disease are often talked about in terms of cost, and I don’t just mean health insurance or prescription medication.

Recently, after spraining my foot while out reporting in the mountains, I began thinking about the personal and social costs one incurs from some sort of symptom set or constraint. I can still walk, but in a controlled ankle motion (CAM) boot, I’m forced to be steadier and slower. If I want to get around quicker, I could spend money on a taxi. Even I want to take public transit, a cheaper option, I’ll still likely force some small percentage of commuters to wait on me. My personal injury or illness may mean the bus doesn’t run on time for a large group of people.

When my migraines were more frequent and intense, it had measureable costs. There is immense privilege in being able to be self-employed, and to have access to the drugs I need. There were times when my preferred prescription, still under patent and unavailable as a generic, cost $45 a tablet without insurance. Weighing whether and when to treat symptoms is something far too many people consider every day. If my husband were ever without full-time work and health benefits, I’d have to reconsider the independent nature of my career.

As with other gendered aspects of illness, I do wonder: when getting sick at work got to be too much of a hassle, why did I solve the equation by removing myself as the variable component? I probably could have explained myself more thoroughly or found workplaces more accommodating to my condition, or to diversity and differences more generally.

For me, being self-employed is a natural fit. I’d always wanted to work from home, and I’m fortunate that enough factors in my life made that a relatively painless transition.

People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met…

But I’m not convinced that freelancing and self-employment offer the easiest career path for the majority of workers, even though traditional workplace culture has been slow to evolve to accommodate a range of limitations, visible or not. People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met, which is sort of what I did without fully questioning why.

People with health conditions and limitations are often the people who are most vulnerable, and many rely on the health insurance coverage and guaranteed salary offered by traditional full-time employment. Statistics show that the percentage of the workforce that freelances is only going to continue to grow as the post-recession economy remains sluggish and companies can save resources by outsourcing work to contractors. On one hand, that seems liberating for some people. But asking those already at risk to invite and endure further uncertainty by working on contract, or to worry about finding and affording their own health benefits, seems like a particularly volatile, unfair situation into which many may feel increasingly forced.

As much as I’m an evangelist for freelancing, I’m also an advocate for being empowered to meet your own needs. It shouldn’t be up to individuals to wage every wage battle on their own. But until there can be more open discussions about the limitations people face in the workplace and better policies to support a wider range of worker, we might have to keep oversharing with our employers, and with each other.

Chronic Pain Q&As

Life On The ‘Opium Couch’

When chronic pain forced Stephanie de Montalk to live fourteen years lying down, she didn't get lazy: she wrote seven books, and got her PhD.

By any definition, Stephanie de Montalk is prolific. As an award-winning author, she has written seven books since 2001, including four collections of poetry, a novel, the biography Unquiet World, and her critically acclaimed memoir, How Does It Hurt? 

Even more impressively, Stephanie completed her PhD, resulting in the publication of How Does It Hurt?, almost completely from her bed. Over a decade ago, she slipped and fell while getting out of the shower. The fall entrapped a major nerve in her pelvis, resulting in debilitating pain, and forever changing her life.

Writer Sarah Wilson, herself no stranger to being a poet coping with chronic pain, sat down with Stephanie for Folks to talk about how living with chronic pain is like holding down a full-time job while simultaneously running a marathon, and why we should believe people who tell us they are in pain, instead of dismissing them as if they had a troublesome cough.

What has life been like for you since the accident? You’ve had multiple surgeries and illnesses to complicate your situation.

My life has changed immeasurably since my accident (14 years ago, November 2002). The fall in Warsaw that damaged my pudendal nerve and its multiple branches not only resulted in ‘severe intractable non-cancer pain,’ as this state of pain is known, but it meant I couldn’t do any activities that require sitting, standing or walking for long: a situation that has worsened with time.

NZ Photographer

Stephanie de Montalk’s headshot.

The restrictions caused by the pain, which I feel in the pelvic floor and adjacent structures, are significant. I must eat and drink standing up or lying down, and can only socialize sparingly. I cannot drive a car or journey far as a passenger, dine out, or go to the theatre, cinema, or anywhere one sits. If I need to fly, I must lean against a wall in the galley or upgrade to Business Class and reclining seats (once, as a result of a booking problem, I had to fly all the way from Auckland, New Zealand to Perth, Australia – 7.5 hours each way – standing the whole time).

This means that controlling the pain depends as much upon immobility as on medications. As a result, I spend each day lying down, on the sofa I call my ‘opium couch’.

This all also affects my family: my husband, my four adult children and my grandchildren. I especially feel for my husband, not that he ever complains. He dwells, as I try to do, on the positive sides of the life we have: a life pared down to essentials and lived to a greater extent than previously in the mind.  Moreover, as an accident compensation lawyer in constant contact with accident victims, many of whom suffer chronic pain, he finds that my condition assists him in his work: he tells me that when he says to his clients, ‘My wife experiences severe chronic pain,’ he hears relief in their voices, and finds that communication with them opens up. 

Through all of this, you decided to undertake a doctorate degree – why?

I knew I wanted to write about pain, but I decided that writing a memoir would not be sufficient. In order to maximize my focus and effect, and in order for the work to achieve authenticity, I needed to place my memoir within a study of pain in a PhD in Creative Writing. In the same way many people who present with chronic, invisible pain are disbelieved, I felt that if I wrote an autobiography outside of the almost clinical frame of higher education, it had less chance of the impact I desired.

The PhD would provide the necessary weight of study and research, and the rigor of critical analysis. The creative components, which included poetry, essay, imaginative biography, would bring the sorts of imaginative light sources needed to illuminate the dark corners of pain that straight writing might not reach.

As well, I decided that the presence in the text of other writers who lived with and wrote about pain, would enable me to step back a little, to explore aspects of pain I experienced in my life through the lenses of others, to present as less preoccupied with myself. 

At work on her 'opium couch'.

At work on her ‘opium couch’.

How Does it Hurt? is the result of this work. What did you hope to achieve with the book?

The idea of a book that would raise awareness of, and bring a degree of clarification to, chronic pain arose primarily as a result of the misunderstanding I was experiencing with my own constant pain.

I felt exiled, isolated, and very much aware that family, friends and even medics were uncomfortable with the subject, reluctant to discuss it. Many were reluctant to believe that chronic pain was not simply akin to a troublesome cough.  This situation was magnified by the fact that my nerve entrapment and damage were rare, and not known about in New Zealand at the time of my accident. I had to fly to Nantes, France for diagnosis and surgery.

I was aware that others in pain were additionally suffering from emotional pain through an absence of validation of their physical pain, and wondered if, as a writer, I might be able to help.

How did you do it?

Completing the PhD was a huge challenge. The physical difficulties of researching and writing while lying down, my pain and fatigue, the medications…  plus the stress of deadlines. I often felt as if I were juggling the degree with running a marathon or a couple of full time jobs. That’s what being in pain is like.

However, as I wanted to finish the work within the three year time frame, I just had to keep my nose to the grindstone. My supervisors were marvelous and came to my house (handy to the university) for our six-weekly meetings; and their support for the project fed my belief that I was undertaking necessary work.

What contribution has How Does It Hurt? made to the medical and literary communities?

The response has astounded me. Clinicians have contacted me to say they have gained valuable insights into the lived experience of pain and are recommending the book to their colleagues. The latter agree that the patient voice is underrepresented in medical literature. I’ve heard that one specialist keeps a copy of the book in his surgery and lends it to patients in need.

In literary terms, I was delighted to present in a session entitled ‘Etched in Pain’ at the 2015 Auckland Writers Festival, where it won a Nigel Cox Award. I had never expected to be discussing the difficult, uneasy subject of physical pain at such a large and receptive literary gathering.

Photo: Arlo Edwards

Photo: Arlo Edwards

What about those who also suffer with pain and invisible illnesses?

Readers are still writing to me, 18 months after publication to say that the book has made them feel less invisible and less alone; that it has validated their pain in the face of dismissal and disbelief. I am often moved to tears by the courage of these correspondents. I always respond and many write back. I’m thrilled to be a witness to the invisible chronic pain community coming out into the open.

Not only pain patients have written to me. I’ve had emails and letters from sufferers of mental and emotional pain, and other chronic afflictions. It seems that there is a hunger for informed, personal, meditative writing on illness of all descriptions.

After all of this… what’s your next project?

There’s not much to say about my current writing, apart from the fact that it takes the form of an extended poetic narrative, and explores the roles of art and the imagination in displacements of the body and soul.