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.


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.


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.


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.


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.