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Essays

There’s No Such Thing As A Free Lung

A lung transplant sounds good on paper, but Annie Stein has found it hard to make friends with this new body part living inside of her.

A miracle is not always what it’s cracked up to be.

Don’t get me wrong, I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

Several years ago, I was diagnosed with pulmonary fibrosis: a nasty disease where fibrous scar tissue spreads through the lungs and smothers you to death. Imagine being choked to death from the inside by a writing rat king of your own scars.. Nasty. And there is no cure.

Annie Stein before her transplant.

The disease can progress slowly over the course of several years, like mine did. But when it gets moving? Hold onto your hats.

One day, you’re breathing on your own–admittedly huffing and puffing, as if you’d just ran a race, but still doing fine. Then, the next day, wham! You’re on oxygen, 24/7, and going downhill like a racecar.

By last June, my disease had progressed so quickly that I was given the choice: lung transplant, or die within a year… and a painful year it would be.

With a husband I adore and two daughters in their 20s, for me, that wasn’t much of a choice at all. But then I went to my first appointment.

I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

First of all, it turns out getting a lung transplant is hardly an option for most people. In fact, it’s harder to get on the transplant list than being accepted as a member of the Pebble Beach Golf Club, except unlike Pebble Beach, it has nothing to do with money or who you know. It’s about the strength and health of your heart, your liver, and your kidneys; it’s about your age, your home care situation, and your emotional and mental health. Luckily, I scored well on all the tests–a first for me and tests of pretty much any kind.

Even if you’re a good candidate, though, that first appointment gives you the lowdown on the potentially ugly side of post-operative life. Downer statistics like transplant success rates, life expectancy rates, and the full monty of side effects you can expect from the flotilla of meds you’ll need to be on to keep your new lung functioning.

The big guns in this army are the immunosuppressants. Our immune system’s job is to fight foreign invaders, which includes colds, flus, viruses, and–yes–new body parts, like a foreign lung inserted into your chest cavity. So unless the big guns keep blasting, your immune system will try to get rid of your new lung… even if you don’t have a functioning original lung to do the same work.

Either way, they can create some gnarly side effects. Whether doctors are bound by law to fully disclose them, or my particular doctor was closer to the ultraviolet end of the doomsday spectrum, I’m not sure, but by the time I left the office, I was no longer convinced that “get a new lung” was the only choice available to me, because it came with a very good chance of getting every cancer and infection that came down the pike.

It got me thinking about that husband of mine, those daughters I adore. I would give anything for more time with them, but was it better for them if I went cleanly, sooner rather than later? My husband is still young enough and attractive enough to find an energetic, fun-loving companion, I thought. And my girls… perhaps I’ve given them my best?

Forget Sophie’s Choice. This one was all mine.

Forget Sophie’s Choice. This one was all mine.

It’s been seven months since my transplant, and the fact that I’m sitting here writing this tells you which choice I eventually made. But it wasn’t without cost.

Most people assume that the transplant surgery, and the recovery period of a month or so after, was “IT” with a capital I-T. Get past that and you’re home free: breathing like a champ, climbing stairs, walking the dog, making love, living life as you knew it. Wishful thinking.

Annie, her two daughters, and her husband.

Before I got my transplant, one of the doctors on my team told me–several times, in fact–about a patient of his who was playing tournament tennis eight weeks after his transplant.

God bless him, because eight weeks after my transplant, I was pulling fists full of hair out of my hairbrush with hands that never stopped trembling. My hair was falling out due to just a couple of the two-dozen meds I have to take every morning. As for the shakes, or tremors as they’re called, they came from my daily dose of steroids… steroids which also give me perpetually cracked lips that no amount of Chapstick has cured.

What’s tremors, or cracked lips, or going bald even, compared to dying? Nothing, right? Bupkas!

Same with the insomnia, or the two-month long bouts of flu, that have come from my ‘big gun’ immunosuppressants doing that huge, important job of keeping me from rejecting this gorgeous new lungs. What can I really do about these drugs that are robbing me of my hair, my sleep, and sometimes even my sense of humor except take them and try to be grateful?

That’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it…

So I do. I think about what I’m going to wear to my daughter’s college graduation next year. I look forward to Stand Up Paddle Boarding again. I go wig shopping. It’s all about my “new now”–the trick is to make friends with it. I think that’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it, and get into gratitude as quickly as you can.

The truth is, there ain’t no such thing as a free lung. Once I understood that, I began to warm up to my new now. I can’t say that we are BFFs yet, but there’s warmth and respect. And maybe, one day, true friendship will grow between us.

Essays

Find Her In The Fog

Living with adult attention deficit disorder is like living in "endless, seeping fog," writes Erin Ollila. In that fog, she perpetually searches for the person she wants to be.

I’m not the homemaker I wanted to be.

I listen, empathetically, to my friends complain about their partners, and the lack of help they receive around the household.

“All I’m asking is that he just takes the trash out. That’s it! Is that too much to ask?”

“I’m so frustrated. We both worked all day, so why am I the person cooking dinner, cleaning up, and doing the laundry, while he gets to sit on the couch and watch TV?”

“I have to ask for his help. I know he’ll help me if I ask him, but why can’t he do these things on his own? No one asks me to do everything around the house.”

I hear them. These hard-working, overtired, selfless ladies. I hear them, and I recognize myself in their words. I hear them, and I wonder what my husband thinks when he looks at me. I hear them, and I vow to be different, to be better.

Every morning, I wake up and think: Today is going to be the day. Today will be the day that the laundry and the dishes are done before my husband gets home. Today, I will sort through the box of loose papers on our desk. Today is the day I will fill the dog’s prescriptions, sign my son’s agenda book before he asks me to, put away my daughter’s too-small clothing instead of just tossing it on top of an overflowing pile in a storage room that’s already bursting at the seams. Today will be the day I leave a love note in my husband’s lunch bag. Today will be the day I clean my son’s room and organize my daughter’s toys. Today will be the day things change—because I want them to, so badly.

But I have ADHD. So today is never that day.

Today will be the day things change—because I want them to, so badly. But I have ADHD. So today is never that day.

It starts innocently enough. I make my children breakfast, bring my son to school, open my computer to start work, and vacillate between that and playing with my toddler all morning long. In reality, I simply move from room to room. Dining room table: computer, numerous open internet browser tabs that I hover between. Living room floor: crayons, plastic kitchen toys, stuffed animals. I float between these rooms, accomplishing almost nothing in either. I make lunch for us. The baby, who is really not a baby anymore even though I can’t stop calling her that, takes a nap.

Ah, the blissful quiet. The moment I can devote to work. I scan my to do list. Before I begin, I realize I need to pay an almost-due bill. Then, I open Facebook—for work, I promise—but fall deep into the rabbit hole of important, semi-important, and utterly unimportant information. I check myself, jump back into my work, and get distracted by a text message.

I realize I never started the laundry, so I go to grab it in the bathroom, but instead I notice I’m wearing a tiger-ears headband and I haven’t even brushed my teeth yet. I brush, saunter back to my computer, work, look at the clock, and realize it’s almost time to pick my son up from school. Though, first, I scoop the crayons off the floor. I put away the toys that are scattered around the kitchen, and cram stuffed animals back into their bins. I change, because I’m likely still in my pajamas, and rush out the door to make it on time for school pick up.

It isn’t until I’m on the way that I realize I didn’t do the laundry. Of course, while driving, I come up with a great idea for work—one that I will almost immediately lose, like all the others.

Erin Ollila has struggled with ADHD for most her life.

If you’re a neurotypical human, you might inherently understand all these situations. Life is distracting, and a house full of children, a job, and activities complicate things. It can be difficult to remember which day of the week is your son’s baseball game, the school concert, or your parent–teacher conferences. But what happens when you ADHD adult attention deficit disorder (ADHD) into the mix? Suddenly, your grocery shopping lists are missing key elements that go unnoticed until dinnertime—which, of course, is already too late. The laundry piles up. So do the dishes. So does the guilt.

I know these scenarios too well. My son wakes up in the morning and goes to his closet, only to realize his school uniform pants are still in the laundry. Now, he will be forced to use the sacred dress-down pass he wanted to save until the end of the school year. My husband returns home from work to a sink piled high with dishes and a dirty high-chair tray. Yesterday, he washed the dishes when he came home, made dinner, and washed the dishes yet again after our meal. Today, the cycle will repeat. I am desperate for the day he returns home to an empty sink and a clean kitchen.

I’ve always owned my ADHD. My faults were my own. The text messages I failed to respond to, the laundry that didn’t get washed for weeks, the school assignments that only got completed last minute were my shortcomings. While I did try to set up organizational systems to keep me focused and on track, I accepted these regular failures as an integral part of my chemical makeup. I was a good friend who wasn’t the best at following through. I was a clean person who lived surrounded by piles of randomness. I was a hard-worker who thrived under the self-enforced stress of deadlines, but failed with the freedom of time.

The problem wasn’t that the ADHD medication didn’t work. The problem was that I didn’t allow it to work to its full potential. So why bother? After a few medicated years, I said goodbye to the moments of clarity, determined to find them on my own.

When you’re living alone with ADHD, you’re only responsible for yourself. There’s no one else to let down.

When you’re living alone with ADHD, you’re only responsible for yourself. There’s no one else to let down. No one else to notice the chaos. When guests come over, it’s easy enough to stuff the laundry in the closet and toss the piles of paper into a storage bin. When you live with others, especially a spouse and children, this changes.

I’m suddenly under a microscope, whether it’s self-imposed or not, and my capabilities and concentration (or lack thereof) can no longer be just a part of my personality. People rely on me. Children have a cacophony of needs. My husband cannot be responsible for the entire household as I wade through the fog of my misgivings.

The thing is, I always wanted to be a stay-at-home mom. I always wanted to work, too. Now that I work for myself from home, I have the best of both worlds. Everything I ever wanted. So, why is it  so difficult?

On occasion, I miss the medication. When I’m staring at a blank screen and my head feels too full and empty at the same time, I long for the sweet feeling of focus. My brain is fog—the dense, deep cloud you cannot see through on the highway—and I cannot concentrate because there is already too much information taking space in there. I can either choose to dig deep, pulling the weeds of dead thoughts so my best ideas can thrive, or I can float through it.

Have you ever driven through a snow squall or endless, seeping fog? You rationally know there is a road to follow, but you also cannot see the path. If you cannot see it, you can’t be sure it’s there. You’ve lost direction. You’re navigating blindly.

This is ADHD.

Have you ever driven through a snow squall or endless, seeping fog? This is ADHD.

The truth is: I can barely remember to take my vitamins every day. I forget to brush my teeth, wear deodorant, all normal every-single-day-I-do-this necessities. Remembering to take the meds—or worse, fill the prescriptions—will take more effort than I have to give right now. Plus, on the good days, those rays of clarity are as sweet and strong as I remember they felt on the medication. My chemical makeup, as sordid and random as it is, will stay untainted for now.

It’s the systems that save me: the routines, the lists, the reminders. My family—their needs—are my medication. My children dictate my a timeline for the day. What gets done, gets done, as long as their needs get met. My toddler is the current anchor in my life that keeps me from drifting off. When everything is centered around her immediate daily needs, I meet them. My son, with his endless extracurricular activities, pushes me from one moment to the next. My husband, without complaint, assumes responsibility to make sure everything gets done.

“You’re a great mom,” he says. “You’re doing the best you can right now.”

The days roll on, and my friends’ words play through my mind. I wonder if my husband thinks those thoughts, too. I wonder what stage of frustration he feels. Does my forgetfulness weigh heavily on him, like the spouses my girlfriends so often complain about? What does he think as he shifts the piles I tell him not to touch so that I can take responsibility for something that never seems to get done? I ask him, for this essay, if he thinks I’m failing.

“You’re a great mom,” he says. “You’re doing the best you can right now.”

I’d like to think he’s right, that I’m doing the best I can, but I’m not sure that’s true. I can do more. I want to do more. I can see the better version of myself peek through the clouds just a short distance away.

I just don’t know how to reach her.

Creative Commons photo by Craig Cloutier.

Essays

I Fake Sick For A Living

Medical students need to practice their diagnosis skills on someone, so they practice them on me. I'm a standardized patient.

As I sit on the exam table in the sterile cocoon of my doctor’s office, clad only in a hospital gown and neutral beige undergarments, a lonely feeling comes over me.

Who am I today? Michele Jones? How long have I been married? When did my symptoms start? What am I supposed to say, when the young person in the white coat asks me what brings me here today? “This stomach pain just won’t go away.”

I rehearse my lines and pertinent medical history, waiting for the announcement that the medical students are on their way. I’m to appear worried, but not overly anxious.

Then there’s a knock on the door. It’s show time.

Being a standardized patient (SP), or a medical actor is strangest job I’ve ever had. I portray fictional patients in simulated patient visits with first, second, and third year medical students. All the “encounters”–as they are called–are filmed and recorded so faculty and students can review them to further learn what part of the exam went well, and what if anything, needs improvement.

If you’ve ever seen the episode of Seinfeld where Kramer gets ‘typecast’ for his bravado portrayal of a patient with gonorrhea, it’s riffing–humorously, but inaccurately–on the job of a standardized patient, One day, I could be an unemployed generation X-er suffering from anxiety. (Been there, done that); the next, I might be a menopausal woman hitting the ER with a compendium of symptoms designed to make even Dr. House blanche.

Sitting in the SP break room is like being backstage on a hospital TV sitcom. The ambiance is supportive and jovial, with many SPs coming from all different career paths. (Actors, retirees from education, hospitality, health careers). Unlike Cosmo Kramer’s scene-chewing, though, I don’t give emotional monologues and there is no dramatic stage lighting. SPs aren’t handed out diagnosis cards. We aren’t privy to what we have. Depending on the case(s) of the day, there will be ten to twenty of us, dressed in hospital gowns, slip socks, and bathrobes, drinking coffee, while we practice the day’s case, quizzing each other on the details of the patient’s history and chief complaint, in order not to miss anything the student asks.

I try to find something in common with every fictional patient I portray.

We all have tricks to remembering case details. I doodle body parts and symbols to remind myself of the location of pain or progression of symptoms. It also helps when an SP with theater background re-enacts vomiting, or shortness of breath, offering me free acting tips. I try to find something in common with every patient I portray. If the fictional patient is worried about a sudden frightening symptom, I’ll recall how scary it felt to wake up with chest pains 8 years ago, only to find out it was a case of pleurisy–an ailment I’d literally never heard of until then.

You might well wonder how I ended up pretending to be sick for a living.

Last January, I began a half-hearted search for an admin job at local colleges. The few job interviews I scored felt awkward, and by spring, rejection letters starteds dribbling in. I blamed it on my extended hiatus from the 9-to-5 life: a freelancer for years, the last full-time admin job I held was during the Clinton administration. Trying to distract myself from my disappointment over how the job search was going, I cracked open The Empathy Exams by Leslie Jamison, which explores her experience as an SP.

A lightning bolt struck me. I could do this! I’m comfortable in medical environments, enjoyed acting in high school and college. Before I even finished the author’s essay on being an SP, I had started searching for standardized patient jobs in my area, which landed me at Albany Medical College. After attending an informational meeting, a formal job interview, passing a mock trial, an employee physical, and the onerous application and background check, I’m back in the workforce, part time.

The specialized work of the standardized patient requires many of my unmarketable skills: offbeat humor, a capacity for deep unpleasant conversations, a curiosity in behind the scenes medical situations, and the ability to make stuff up on the fly. It is not for the super self-conscious. I memorize the case script, and listen quietly to students pore over symptoms and possible diagnoses. After my performance, I offer brief constructive feedback on the student’s communication skills using a checklist, while a seasoned 4th year medical student gives feedback on the choreography and organization of the exam, as well as more technical advice in non-translatable medical lingo.

Either way, I’m always rooting for the medical student no matter what snafu.

During these make-believe doctor visits, I have to multitask. In addition to performing a role, I take mental notes when a student misses an opportunity for empathy, or uses too much medical jargon, or asks a question in a judgmental manner. Many times the student’s natural compassion and confidence comes through, and I only have flattering feedback to offer. But sometimes, an unexpected symptom can stump a student into a brain freeze, and the flow of the patient rapport can be derailed. Either way, I’m always rooting for the student no matter what snafu.

The first time I participated in a physical exam practice, I was a little nervous. While all the other SPs were relaxed and chitchatting before First Year physical exam practice, I was as anxious as if I was going to a real visit to the doctor. What about my decrepit toenails? What if I sneeze or my stomach grumbles really loudly? I should have flossed today. Sporting my hospital gown and carrying a cup of water and my drape, I scurried to my assigned room. But as soon as I saw the student was way more nervous I was, I remembered that this is not about me: we are all just glorified bodies for the students to practice upon. My main mission here is to be my supple soothing self.

After five minutes, the student gets into the zone. One fellow SP told me that she silently screams positive affirmations in the hopes to calm the few very nervous students. I try it out. “Everything is going to be fine. You got this! You’ll be doing in your sleep in a few years!” It’s very rewarding for SPs who work at the same medical college for a graduation cycle, to see uncertain students grow confident and hone their patient rapport and history collection skills through encounters through their second and third years.

As part of my training, I had a physical exam by one of the faculty members, who went through the procedure that the students would be performing. I knew to expect the Babinski (scraping the sole of the foot in a certain obnoxious way to check for plantar reflex) or the dreaded thyroid test, which has been my biggest challenge: I’m ticklish, so it’s hard not to laugh as the student checks my thyroid by putting her hands around my neck. But I always try my best.

We standardized patients aren’t just actors. We’re educators.

When the case involves a physical exam, I have to remember more parts, because during feedback I may be asked how I felt during the physical exam, and I can bring up anything that I really appreciated (for example, asking me if I’m comfortable, and letting me know what they are checking for). If I felt uneasy when the student was pressing a little too much on my ears with the otoscope, I can gently bring it up in feedback, and then the 4th year who watched from the control room or sat quietly in the office, can show them a better way to perform the ear exam. (Resting a hand on the patient’s shoulder helps steady the student).

There’s something deeply satisfying about helping a student on their path towards being a doctor. Being a standardized patient, my body can work at improving the care of future patients, and help show doctors-in-training the ropes. Which is ultimately what, I think, I find so deeply satisfying about the job, six months in. We standardized patients aren’t just actors. We’re educators. And in a roundabout way, I’m using my body to help other people save lives.

Health & Fitness

The Tale Of The Long Island Mariner

Type 2 diabetes and weekly dialysis won't stop Peter Lamia from hauling in the bluefins whenever he can.

With his gruff voice, stocky build and full white beard, Peter Lamia could’ve have strolled out of the verses of the Rime of the Ancient Mariner. And like the salty old sailor from the epic Coleridge poem, Peter has no shortage of tales to tell about his time at sea.

If Peter looks the part of a storybook sailor, it could well be down to a lifetime spent fishing the Atlantic waters. As a child, his uncle took him fishing on open boats off the Long Island coast, where he still lives. When he was twenty two, fishing became a career.

It all began one January, when a bout of pneumonia forced him to take some time out of his political science studies at Columbia University. As he slipped further and further behind with his college assignments, he decided to find some paid work to tide him over. A friend suggested he head down to the docks at Long Island’s Captree State Park, to see if any of the charter fishing boats needed crew.

Peter Lamia acting as mate on the Fishfinder.

“I got there late, most of the boats had already gone out fishing already. But one guy was still there working on his boat. I said ‘do you need any help?’, and he said, ‘can you fillet fish?’ and I said I couldn’t, then he said, ‘if I put a knife in your hand will you cut yourself?’ and I said ‘I don’t know,’ and he said, ‘you’re hired!’

Peter didn’t go back to college. Instead, he found another education on the ocean. That first captain was Eddie B. Although he was a great teacher, showing the young man everything he needed to know, he wasn’t the best boss, Peter remembers. The boat crew earned tips from the passengers who’d hire the boat for the day, and the captain had the “inglorious habit” of putting his hand into these earnings. One summer with a tip-skimming captain was enough, and Peter soon moved on to his next job: a bluefish charter boat.

Bluefish bite after dusk, and Peter’s shift was 7pm till 4am. It was arduous work–which wasn’t all due to the fishing. “The kind of people that night fishing attracted back in the seventies were a little rowdy, and they had a tendency to have a few too many beers on their fishing trip, and it could get ugly.”

Since they run in large schools, bluefish are fairly easy to catch. However, adult fish are strong, fast and aggressive, with low-slung jaws and sharp teeth which won’t hesitate to snap at careless hands. An adult can easily weigh twenty pounds–a sizeable catch for any angler.

“You’re talking about fish that could take your finger off, fifty people on a boat with fifty lines in the water… tangles, screaming, yelling, and confusion.”

“Bluefishing can be a nightmare: you’re talking about fish that could take your finger off, fifty people on a boat with fifty lines in the water, and twenty people trying to get their fish onto the boat at once. There were tangles, screaming, yelling and confusion.”

Almost forty years later, Peter looks back fondly on those early days out on the Atlantic. While he still gets out whenever he can, his life has been different in the last ten years, since a Type 2 diabetes diagnosis sent his health downhill.

His first inkling something might be wrong was a good twenty-five years ago, when a blood sugar test came back on the high side. But he ignored the symptoms – an easy thing to do with diabetes, he says.

“That’s the horrible part about diabetes: there are no symptoms, you feel nothing. But even though you feel nothing there’s a degradation happening within your system.”

Ten years ago, in his early fifties, Peter returned to Columbia to finish the political science degree he’d begun three decades earlier. He’d always regretted not seeing it through, and at the urging of his girlfriend Abby he took the entrance exam, placing in the top two percent of students. The rest, he said, just fell into place. During those first few months of study, he went for a checkup at the campus clinic. He wasn’t feeling great, and the nurse took a blood sugar test.

“My result was off the chart, I blew past the highest number. The woman that did that test said, ‘I can’t believe you’re not in a coma.’”

Lamia shows off some flukes on the Superhawk.

These days, Peter’s retired, but he still gets out on the ocean whenever he can. Unfortunately, fishing competes with other, more pressing matters: like twelve hours of weekly dialysis, and diabetic retinopathy, a common problem for diabetes sufferers, who are at risk from a host of eye-related diseases.

“One morning I woke up and it looked like a Rorschach test in front of my eyes, I was terrified. I went to the eye doctor and they told me it was blood leaking from my eyes.”

Doctors treated Peter’s eyes with laser treatment and steroid injections, but when these didn’t work, Peter went onto an Iluvien implant, a slow-release steroid which should last up to three years. The next step is a new kidney, which his brother has offered to donate.

That’s the horrible part about diabetes: there are no symptoms, you feel nothing.

Peter’s the stoic type, though, not one to complain or dwell on hardships. It’s hard to say whether this stoicism is a product of his years at sea, or an innate quality that naturally drew him to the kind of hard work you only find on fishing boats.

And those early saltwater days were hard, he remembers.

The Fishfinder II, looking for another school of bluefish before heading into the sunset.

“On the bluefish boat, I would get sick every night. I never threw up, but I’d get green around the gills. And since I was the new guy, I was the chum boy. The chum was in a five gallon barrel, a mix of ground up fish and blood. I’d take a ladle and spray it out every fifteen seconds onto the water, to create a slick to attract the bluefish. There I am, sick in the first place and every time I ladled it out, a little bit of breeze would spray some of the chum into my face.”

Like the Ancient Mariner, Peter has tales of ocean disaster. The most devastating involved an accident with a flat-bottomed clam boat.

“The boat had been hired for a charter cruise one night. This teenager had a clam boat, he and his friends were playing chicken with our wake, jumping over the waves with the boat. They turned into us and buried the entire thing into the stern of our boat.

“One of the kids was never found. Another kid was thrown onto our boat. His head hit the rail coming in, he split his skull open. The charter we had that night happened to be doctors and lawyers, and the doctors used the boat’s garden hose to do an emergency tracheotomy to try and save him but the kid died.”

After a lifetime spent on the ocean, Peter still says he’d go fishing every day, if he could.

“The season has started and I’m dying to go out. Lovely, crappy, it doesn’t matter–I got rain gear. It’s not just the fishing, you’re out in an expanse of water and it’s just absolutely gorgeous. No place I’d rather be.”

Essays

Sick Women, Raise Your Fists! How To Fight The Power

In these Trumpian times, how can the chronically ill engage in political activism? It starts by learning how to articulate your experience.

When I first became chronically ill, I turned to writing to cope. I wanted to rip open and lay bare all the messy painful parts of my illness, and help to educate people about the many difficulties sick people face – physically, emotionally, financially, and politically. I hoped that my writing could help give voice to those who are silenced by illness, and ensure that our existence and our needs are taken into account, especially by those in government.

But I found that, no matter how many words I used, I couldn’t truly do that justice. The experience of pain is universal, and yet, it isolates us because it is so difficult to communicate. Pain scales fall short, a thesaurus of adjectives is inadequate. We can understand our own pain, but we can never truly grasp another person’s. As Stephanie de Montalk said, the only person that can truly understand chronic pain is a fellow sufferer.

Without knowing how to communicate my experience, my world shrank. I became isolated, trapped in the limitations of my body, and struggling to communicate how that felt. The ways in which I connected with the world previously were unattainable. At the same time, the world started feeling increasingly hostile to me: I began to feel invisible politically, dismissed by many as a faceless drain on the system, as opposed to an equal citizen.

How do you play a part in, or push back against, a world that can feel so hostile to you for being in pain?

So how do you fight back? How do you articulate your experiences as a chronically ill person in a way that other people can understand? And how do you play a part in, or push back against, a world that can feel so hostile to you for being in pain–and not your illness for causing it–that some of the greatest political issues of our Trumpian times is whether or not healthy people should have to pay for the treatment of sick people at all?

If these are questions that resonate, here are two theories–both written by women with chronic illnesses–which have helped me be able to understand and put into words some of my experience as a chronically ill woman, and feel as if I am making a difference in the world, even if I can’t physically protest.

Firstly, Christine Miserando’s Spoon Theory is a way to quickly and easily quantify limited energy, which often plays a huge part in the life of people with chronic illness. Spoon Theory helps us communicate that by using spoons as a metaphor for units of energy, almost like segments on your smartphone’s battery meter. In Spoon Theory, every person has a finite number of spoons, but people with chronic illnesses have inherently less spoons than well people. So saying “I’m low on spoons today,” is sort of like saying “I’m tired,” except it’s more accurately: “Because of my illness, I am so tired that I cannot do all the things a healthy person can do.” Not having the spoons is like trying to run your iPhone with a battery that only carries half the charge.

Miserando, who has Lupus, coined Spoon Theory in 2003. Since then, it’s become common terminology and has its own Wikipedia entry. Some people with chronic illness or disability refer to themselves as “spoonies.” I have a spoon crossed with a pen tattooed on my hip. It illustrates the intersection of two major parts of my identity–writing and illness–in a way that looks like a battle flag. That’s because political protest and activism is also a big part of who I am, and I struggle to do it with limited spoons.

How do you throw a brick through the window of a bank if you can’t get out of bed?

This question–how do we protest when we are chronically ill?–is at the heart of Johanna Hedva’s Sick Woman Theory.

Johanna, who an autoimmune disorder, endometriosis, and mental illness, asks, “How do you throw a brick through the window of a bank if you can’t get out of bed?” The answer is: you can’t. In that case, Johanna argues that “most modes of political protest [for the chronically ill] are internalized, lived, embodied, suffering, and no doubt invisible.”

If that’s true, even existing as a sick person is a form of activism. It is not necessary to march in the streets. When health policy rules that you will not be given the allowances and care you need, survival itself is the protest.

When battling pain and fatigue in a world that doesn’t easily understand your limitations or provide for them, Johanna says that the most “anti-capitalist” thing people can do is care for themselves and others. To “take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community.”

She writes about hearing, but being unable to attend, the Black Lives Matters protests in Los Angeles in 2014. “I listened to the sounds of the marches as they drifted up to my window. Attached to the bed, I rose up my sick woman fist, in solidarity.”

Even existing as a sick person is a form of activism.

Reading this for the first time, I wondered; how could I lift my own fist in solidarity? Not just in response to Black Lives Matters, but other political movements happening around the world that affect minorities?

Unable to physically attend protests, my means of raising my voice is through writing publicly about issues that affect chronic illness communities such as health policy and social welfare. In New Zealand, we have a mostly public health system, not based on private insurance, so we’re not as easily affected by decisions around things like “pre-existing conditions” as currently being debated in the United States. But politics still decides which services and medications will be funded and therefore accessible. We also have one of the highest suicide rates in the world, driving calls for radical change to the mental health system.

Both these theories have given me language I can use to reach out, to better understand the chronic illness experience and explain it to others. It’s also given me a way to think about being an activist with low spoons.

Even if we are raising our fists from where we lay in bed, we can acknowledge each other’s ‘spoons’, and show others how to create and enact welcoming communities for vulnerable members of society whom policy will often affect the most. And we can remember that, for some of us, protest will be much more small and silent than we may like. It may be as simple as surviving. But that doesn’t mean that it cannot be seen.

Top photo by Pabak Sarkar used under Creative Commons license.

Essays

How I Beat Postpartum Depression

One in seven women experience postpartum depression. So the trick is knowing you're not alone. You just need to find your tribe.

“I cry so much I worry he will remember his childhood filled with tears. I cry because there are so many things I don’t want to forget—the way he pecks like a bird for my breast and sometimes mistakes his knuckle for me, his little knee bent while he feeds … his noises, his smell—oh God, his smell.”

“It’s just that sometimes I am a robot playing his mother. I still don’t know how to be his mother. I am always looking out of the robot’s eyes, never sure completely whether I truly feel this thing or that, or if it’s because I ‘should’ feel it.”

I wrote those words in my journal a few months after giving birth to my oldest son in 2010. The joy of bringing a new child into my family was often clouded over by moments of intense depression and anxiety, which lingered untreated even up to a year and a half later.

Sometimes I would write about “the robot.” On darker days, I wrote about hurting myself, what it would be like to just not live anymore. I was instantly aware of how selfish it sounded for a mother of an infant to think about killing herself. That guilt made the situation even worse—and of course, harder to talk to anyone about.

I was not supposed to feel like this.

I was not supposed to feel like this. My Facebook feed was filled with beautiful photos of softly swaddled, happy infants and mothers (in fact, I had put more than a few of those photos out there myself). Everywhere there were blog posts and even strangers in Target admonishing me to, “make every minute count” because “they grow up so fast.”

Was I supposed to make these minutes count, the minutes when I lay in bed, running a finger over my numb c-section scar and crying myself to sleep? I just wanted those minutes to be over.

As my baby grew older, I would structure my day around his naps, scheduling work that needed to be done in the hourlong scraps of time I thought I could rely on. When he didn’t fit into that schedule, I sank deeper into the hole. I was exhausted. There was never a time I didn’t feel like someone needed something from me, and there didn’t seem to be much left to begin with.

The author and her two sons today.

Complicating matters was the fact that I lived in a small town in Michigan. On the days I felt strong enough to advocate for myself and get help, I dialed number after number of psychologists and psychiatrists. I had the benefit of good insurance through my husband, but I was turned away due to not enough supply of mental health professionals to meet the local demand. One therapist told me, “I’ve got a waiting list for my waiting list.”

I called the local hospital one day and pleaded to be connected to someone who could help me. I was having thoughts of self-harm, I told them, but I wasn’t able to find a therapist who could see me. They asked if I had Medicaid to qualify for mental health services. I did not. They didn’t have any alternatives to the crossed-out list already in front of me, and I hung up, dejected once again. Moments later, my phone rang from my local 911 dispatcher. Was I OK? She had received a call from the hospital. How could she help? I laughed into the phone. “Can you find me a therapist?”

My phone rang from my local 911 dispatcher. Was I OK? I laughed into the phone. “Can you find me a therapist?”

When my son was about 15 months old, I finally got help. I started seeing a therapist once a week. It wasn’t a cure-all solution, and I still battled depression off and on. My therapist made me sign a contract that I’d call 911 or go to the ER if I had more thoughts of self-harm. I spent one January night sitting in the parking lot at the hospital, debating whether I should check myself in or not. Where would they send me? What would happen to our son? I was his primary caregiver in those days.

Slowly the fog lifted. With the help of my therapist, I was able to look at my situation with a bit more clarity and compassion. I needed help, and not just psychological help. I needed help taking care of my child, time for my own work (which had fallen by the wayside) and self care.

I didn’t know it at the time, but I also could have benefitted from a community that could help me navigate this transition into motherhood. I realized how isolated I had become. My family was scattered several hours away. I had few good friends in those days who were parents. I had always been so independent and self-reliant; the benefit of reaching out to a group of people who was going through what I was going through was a foreign concept to me.

The next time, I would change all of that.

In 2014, my husband accepted a new job in Texas, and I discovered that I was pregnant with our second baby. As we drove our loaded-up minivan across the country, I plotted how I would do things differently. And if I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

If I was lucky enough to escape postpartum depression this time, I vowed to do something to help other women in my situation.

The first thing I did was create an online community, a private Facebook group, for other people who had struggled with postpartum anxiety and depression, and therefore could understand what each other were going through. Here we could speak openly and frankly in a nonjudgmental setting. I spread the word among all the parenting groups I knew, and instantly I connected with several people who understood my exact struggle.

That spawned real-life group therapy sessions, where local moms shared their stories with a local therapist, and we all helped each other come up with strategies and coping mechanisms.

I started volunteering for the Pregnancy and Postpartum Health Alliance of Texas, eventually earning a scholarship to study to become a postpartum doula specializing in helping mothers with postpartum depression and anxiety. I had never heard of a postpartum doula before—essentially, they provide the extra hands and hearts of a surrogate family member, coming in to help new mothers after the birth of their babies with everything from practical day-to-day tasks like washing dishes and playing with older siblings to just listening to moms and dads and their challenges.

These experiences opened my eyes to the heartbreaking reality of postpartum mood disorders.

Before when I struggled alone, I kept telling myself “this can’t be the reality for most women,” but unfortunately, in my talks with other mothers since them, I have found that suffering in silence is quite common. The American Psychological Association estimates that one in seven mothers experience postpartum depression.

The intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome.

We are conditioned not to talk about these symptoms. I learned that the intrusive thoughts associated with postpartum anxiety and OCD are actually very common, and with help, can be managed and overcome. However, because of headline-grabbing cases of women who harm their children due to postpartum psychosis (a rare but serious postpartum illness), we are frightened into not speaking the words that actually have the power to help us heal.

We have such a long way to go before women suffering from postpartum mood disorders are properly cared for and supported in a comprehensive, meaningful way and feel comfortable speaking their truth without fear, but I hope that essays like this in some way help to further the dialogue.

It’s almost guaranteed I will hear from other mothers after they read these words. Whenever I speak out about postpartum mood disorders (it’s becoming a bit of a soapbox for me), friends message me sharing their own stories that they too have suffered or are currently living in the shadow of postpartum depression or anxiety.

Talk to someone…you’ll be surprised at the number of people who will feel empowered by your act of strength.

For women living in rural communities or areas without access to mental health resources, my best suggestion is to talk to someone–a friend, your partner, your OB or physician. Maybe you can find (or form) a group like I did.

You’ll be surprised at the number of people who will feel empowered by your act of strength, even if you don’t feel very strong. Talking about postpartum mood disorders rather than living in the shadows is the first step toward taking away their power and finding your own once again.

Creative Commons photo by Barbara W.

Essays

The Kiddie Car Syndrome

Steering a loved one through illness can bring back to the surface childhood disillusionments long thought forgotten.

The summer I was three, my parents took me to Jones Beach to play in the sand and drive the kiddie cars around a small circular track.

I took driving very seriously, negotiating every twist and turn with elaborate care.  And my efforts did not go unnoticed.

“Look how well she drives!” cried my mother.

“She stays right on the track,” said my dad.

I was impressed by my own virtuosity.  In fact, I was so good that when we went back the next year, the kiddie car operator remembered me.

“There’s that little girl who never goes off the track!” he said.

Wow! I must be really good.  I tried not to let the exhilaration go to my head as I carefully turned the wheel, not once veering off the track.   And then, inexplicably (I must have suspected something) I took my hands off the wheel.  The car kept circling the track, maneuvering perfectly around the curves with no help from me.  I was crestfallen.  I was also pissed off.   The adults had given me the distinct impression that I possessed a rare talent for kiddie car driving.  And I had believed them!  Now, it turned out, I hadn’t been doing anything at all.  Nothing, nada; it was all an elaborate lie.

This experience left me with a lingering suspicion of adults.  What other fictions were they perpetrating?   I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.  And the kiddie car syndrome – the illusion of control – was a thing of the past.

Or so I believed.

“I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.”

For over ten years now I’ve been guiding my husband through various health crises including several strokes, two valve surgeries, and a series of life-threatening leg bleeds caused by his medication.  John, who was a college professor for fifty years before he retired, is more interested in the geneses of totalitarianism and the paradoxes in Gulliver’s Travels than the irregular beatings of his heart.  So I became his health advocate.

And I am a fierce advocate.  I foresee danger and circumvent it at every turn.  Once I ran into a hospital procedure room where John was about to have an angiogram.

“Don’t put the catheter up his left leg!” I cried.

John had been in the hospital for several days and I suspected, from something he’d said just before the procedure, that he’d had a bleed in his left leg during the night.

My dramatic announcement stopped the doctor cold, which was a good thing because I was right about the left leg.  John had sustained a bleed during the night, and putting a catheter up his newly-injured leg might well have resulted in a more serious bleed. Once again, with skill and foresight, I had narrowly averted disaster.

For the next five years, John’s health was relatively stable, which, in the language of medicine, is a beautiful word.  Then, two weeks ago, he had a seizure in the middle of the night.   I was completely unprepared for this and didn’t recognize it for what it was (a post-stroke seizure).   I fully believed I was witnessing my husband’s death.  After calling 911, I shouted to our twenty-year old daughter.  Together we managed to turn him over so he could breathe freely until the ambulance arrived.

John is home again now, and doing well.  But his seizure reanimated the painful disillusionment on that long-ago day in Jones Beach.  During the past ten years, I believed (or talked myself into believing) that I was single-handedly responsible for my husband’s health and well-being, vigilantly steering him around sharp curves and avoiding dangerous cliffs with diet, exercise, and close monitoring.  Now, once again, I’m reminded that I may be in the driver’s seat, but I’m not steering the car – at least not one controlled by a kiddie car operator who keeps me on track.  The car I’m driving now (metaphorically) is more like a bumper car.  I still manage to circumvent some collisions, even some dangerous ones.  Those I don’t avoid I interrogate myself about endlessly.  What if I’d stayed to the outside track?  Could I have avoided that last bump?  What about the red car racing straight towards us?  Can I make a sharp turn and speed away?

In spite of my vigilance and John’s cooperation, there are bumps and jolts I have not been able to avoid.  Some have been more sharp than others.

People often say to me, “You’re doing so well with John!” or “I’m really impressed with how well you take care of John.”

To me, it doesn’t feel like I’m doing a spectacular job caring for John, because the outcome is not spectacular.  After all, inevitably, the ride will come to an end.  But for right now, I’m keeping hands securely on the wheel.

Illustrations by Shannon Wheeler.

Profiles

The Singer With Honeycomb Bones

Along with her faithful service dog, Connie, Ailsa Lipscombe traveled from New Zealand to Chicago to pursue her life's greatest passion: the music that lets her body feel free.

Ailsa Lipscombe has the words Per Aspera Ad Astra tattooed across her forearm. It’s Latin for “through hardship to the stars,” and Ailsa knows a lot about what that means.

Per Aspera Ad Astra. Photo: Stuti Sharma

Now 25, Ailsa has been in pain for twelve years. At age thirteen, she fell over at a bus stop and twisted her ankle. It was a bad injury, but it should have healed quickly. But the pain spread. Her leg became swollen, purple, and freezing cold.

It was ten months of agony before she was diagnosed with Complex Regional Pain Syndrome, a disorder that affects the nervous system. The symptoms vary wildly, from extreme skin hypersensitivity, muscles cramps and aches, and, in Ailsa’s case, slow loss of sight. The exact cause of CRPS is unknown, but even relatively minor trauma can trigger it, and the progression of symptoms is different for everyone.

In 2011, Ailsa wrote a letter to her twelve-year-old self. “When you’re diagnosed, it’s going to seem like the end of your life,” she wrote. “But it’s not. It’s just the beginning of a new life you didn’t imagine you’d be living.”

When you’re diagnosed, it’s going to seem like the end of your life. But it’s not. It’s just the beginning of a new life you didn’t imagine you’d be living

The next few years would be a major period of adjustment for Ailsa. At first, she was excited to have a name for what she was going through, but she soon learned that in this case, the name is not particularly helpful.

“We are taught in society to expect a very linear model of health care, where you get sick, receive a diagnosis, receive treatment, and get better,” she says. “However, with CRPS there is no standard treatment plan and when I first developed it, very few doctors had even heard about it.

“By  the time I received a diagnosis almost a year after first getting injured, my pain and symptoms had already spread through my entire leg and I was experiencing secondary complications, such as honey-comb bones (osteoporosis), muscle atrophy, and myoclonus. Since then it has further spread, affecting my whole body, vision, and digestive system.”

After her diagnosis, Ailsa began to rely on crutches, and then a wheelchair to get around. School and socializing became difficult. In 2007, she fell into a coma and almost died. In 2009, she began losing her sight.

In her letter to herself, she says; “When your CRPS starts to spread, you’re going to be scared. That’s ok. You’re allowed to be scared, and crying is not a sign of weakness. It’s a sign that you’ve been strong for too long. Just keep studying and never stop singing. Music will save your life countless times in the coming years.”

Every day, Ailsa lives with extreme widespread pain from misfiring nerve signals, muscle and joint cramp, and allodynia–a hypersensitivity where stimulation that shouldn’t hurt causes severe pain. That means small tasks can be very hard. Something as simple as taking a shower often causes her to faint from overheating; cooking a meal can exhaust her to the point of being too tired to eat ; going for a five minute walk can leave her legs feeling like they are on fire, as if she just ran a marathon. She spends a lot of her day planning her energy very carefully.

But none of this has seemed to slow her down. Ailsa, born in New Zealand, is currently living in the US after receiving a prestigious Fulbright Scholarship to study her PhD in music at the University of Chicago.

Moving across the world would be a daunting prospect to anyone, but Ailsa’s health had made her question whether she’d ever be able to live independently.

“I’m sure anybody would feel some trepidation to move such a distance,” she says. “To get into the University of Chicago – I felt both excited and quite scared.”

Connie, Ailsa’s Service Dog, would prove the vital support she needed to make the move in 2015.

“Connie is a true superstar,” says Ailsa. “She absolutely revolutionized my life.”

Ailsa Lipscombe and her service dog, Connie. Photo: Stuti Sharma

Connie, a four-and-half year old labrador-retriever, is trained primarily as a guide dog, but she helps Ailsa with many different tasks.

“Connie gives me the independence to go out alone and be able to cross roads confidently and navigate busy and new spaces. She is trained in counter-balance–helping me up stairs by grounding me so I don’t fall–and in tasks such as picking up things for me that I drop.

The only big thing that [my service dog] had to get used to was walking on the right side of the pavement, instead of the left!

“Moving with a service dog requires a lot more planning about really small things… for instance, will there be parks nearby for Connie to play in? I had to read up a lot about American service dog laws so that I could be sure I was following all the rules. Some things were made much easier by Connie’s presence, however. I’ve never felt truly alone since moving, and she’s also a great ice-breaker when meeting new people! Connie found adjusting to her new life in the U.S easy. The only big thing that she had to get used to was walking on the right side of the pavement, instead of the left! It is because of her that I felt confident to move to the other side of the world and she’s done wonders in making me feel settled and happy in Chicago.”

Ailsa’s PhD focuses on something she’s always loved: music. As well as researching it, she’s on the board for the Graduate Music Society, helps organize social events for the music department, and represents the Humanities Division on the Graduate Council. When she’s not busy at the University, she’s exploring Chicago, spending time at Lake Michigan – which reminds her of the beach at home in New Zealand – and singing, both solo and in a choir.

When Connie first came to America from New Zealand, she had to learn to walk on the other side of the sidewalk. Photo: Stuti Sharma

“When I sing, I feel free,” she says. “I feel like music allows me to move beyond my body. I am no longer constrained by my mobility or pain and can experience some of the freedom that I often feel I am denied due to my health. When I got sick, music became the bridge between my ‘old’ healthy life and my new one that was defined by chronic illness. When I sing, or play piano or saxophone, I still feel pain and discomfort, but I also feel like me. Performing has allowed me to hold onto my old life even when adjusting to my new.”

Ailsa’s love of music began early. She recalls memories of singing in the car on road trips, and dancing in the living room with her sister. She learned to play the acoustic guitar and piano at elementary school, then the harp, Cuban percussion, and saxophone, as well as singing in choirs. She started private singing lessons at age eleven.

This passion spread into her academic life. After graduating college, she went on to complete a Master’s Degree at New Zealand’s prestigious School of Music.

“A lot of my research focuses and has focused on bringing the voices of the unheard into the academy,” she says.

Her recent work has looked at the under-represented voices of indigenous groups within animated films like Disney’s Frozen.

When I sing, I feel free. I feel like music allows me to move beyond my body.

“I think it’s important because even when underrepresented groups get a chance to ‘speak’ in mainstream film or the arts, their voices are often managed and controlled by reigning systems of (white) power. So I think it’s important we understand how indigenous groups and underrepresented communities are incorporated into the media.”

She’s now exploring how patients experience sound in hospital.

“I initially planned to research how various cultures are portrayed and (mis)represented within film and television. My PhD program requires me to take two years of coursework before I begin working on my dissertation, so I’ve had time to revise this plan. My research is likely going to explore the role of sound, silence, and music in experiences of patients and practitioners within medical environments. I’m particularly interested in understanding how multi-sensory experiences of space (in person and also mediated through television and film) change perceptions of pain, anxiety, and dis/comfort.”

Her discoveries so far focus on the multifaceted meanings of sound.

Photo: Stuti Sharma

“Sound is neither good nor bad and cannot simply be muted or eliminated to improve the soundscape,” she says. “Sounds and noises function differently depending on who is listening and how they are listening.”

Pain and the perception of it is something Ailsa knows all too well. She plans her days carefully, thinking weeks ahead about what she wants to do and what is expected of her, to figure out what energy she will need and when. CRPS affects her entire body.

But Ailsa says she is who she is today because of her health journey, not in spite of it.

“My tattoo–Per Aspera Ad Astra–reminds me that I have to go through battles to reach my goals and that positive outcomes are achieved not just through hard work but also through the ability to face challenges and work through them. Whether I like it or not, my health is a part of who I am and when people say that I have achieved something “despite my health” it’s asking me to deny a part of my life that has undoubtedly motivated me onwards to fight for what I want to achieve.”

Ailsa wrote to her twelve-year old self: “Trust in God. Trust yourself and your own strength, and keep on keeping on. You’ll be ok. Trust me.”

She plans on returning to New Zealand with Connie once she completes her PhD.