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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

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

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

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

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

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

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

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

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

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

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

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

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

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

A National Epidemic, Especially Among Women

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

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

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

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

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

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

How Migraines Gave Me My Dream Job

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

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

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

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

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

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

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

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

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

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

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

gustavo

Photo: Gustavo Devito

 

But Self-Employment Shouldn’t Be The Only Solution

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

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

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

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

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

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

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

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

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

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.