Category Archives: Coping/Progress

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Boo Radley Emerges from the Shadows

My first year out of college, my friends and I started referring to my extended absences from social life as my Boo Radley phase, in reference to the hermetic recluse in To Kill a Mockingbird. At the time, my lungs were totally unstable and I was in and out of the hospital all the time. Whenever I was home, I was too tired from fighting infections and trying to stay on top of my work projects and grad school assignments to do anything else.

Clearly, it was an isolating time. Despite secondary medical conditions that have sidelined me, my lungs have been much more stable over the past year or so, and it’s been awhile since I cracked a joke about being Boo Radley to friends as I called them to cancel plans.

And yet as Labor Day Weekend fades into the past and autumn is no longer deniable, I find myself feeling a little bit like good ol’ Boo, emerging into the daylight for the first time in a few months and figuratively blinking in the light. It’s the first day of classes at the university where I teach, forcing me to realize just how long it’s been since I’ve had to function in the outside world.

As a writer and a professor, I relish the summer. No student essays to distract me, to trips to campus to meet with students. I can write, write, write (in theory, anyway)—and I never have to leave my home office. Except for intense two-week portion of a year-long fellowship program I am in this July, I haven’t had a set schedule since May. Don’t get me wrong, I did get a lot done. I wrote a ton of freelance articles, I pitched other ideas to editors, and I accomplished the most time-intensive and professionally significant task of the summer, getting an agent for my first book.

But I spent the summer in my gym clothes (which also double as my chest PT clothes). When I didn’t feel well or the humidity got to my lungs, I rested. When my energy levels plummeted—as they often do—I curled up on the couch with my laptop resting on my legs and did my work that way. When I had bad days physically and didn’t feel like dealing with the outside world, I didn’t have to. And I never wore heels.

Now I am back in the world of the healthy—at least three days a week, anyway. I am teaching courses about writing for the health professions and how language shapes constructions of health, and the one of the largest roles I play, that of patient, falls all the way to the bottom of the list once the semester begins. Officially, I am an instructor and a writer, and all the signs and symptoms of illness I didn’t have to hide over the summer are back under wraps.

I am really excited and passionate about my content and courses (how could I not be?), and am ready to assume the role of healthy person…almost. I just need a day or so to get used to my September persona..and the heels.

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It’s All Relative: Gaining Perspective in Maintenance Mode

After twenty-odd years of respiratory emergencies, bizarre infections, and multiple body systems going haywire at the same time, I am used to crisis mode. I studied for finals and wrote newspaper articles from the ICU in college, backpacked through Europe with a broken ankle and torn ligaments, and taught undergraduate writing classes so fresh from the hospital that I still had an IV in one arm and a hospital bracelet on the other.

My attitude matched my actions. During ambulance transport, I cracked jokes through an oxygen mask. I referred to spells where I was too run down to even leave the house as my “Boo Radley” days, and when innocent phlebotomists entered my hospital room to draw blood, I serenely offered them my ankles since they’d be hard-pressed to find a vein anywhere else.

And then something happened.

I got better diagnoses, more targeted treatment plans, and doctors who managed to unravel the thorny mess known as my medical history. I entered a hitherto foreign place known as maintenance mode. I wasn’t healthy in maintenance mode, but I was stable. Instead of the cycle of crisis-recovery, crisis-recovery that had shaped most of my life, I had series of so-so days punctuated by the occasional really good or really bad day. The difference was that the really bad days were not nearly and difficult as they had been, and the really good days were markedly better.

Sounds great, right? And it was. But it was also hard. I simply didn’t know how to exist without a constant barrage of setbacks and calamities, and I’d never had the downtime to evaluate how my baseline health status had changed over the years. While it was wonderful to not be in and out of the hospital as often, it was almost as tough to see for the first time what “everyday” health meant for me. Most days, I did have a hard time breathing, and that was never going to change.My energy level was still pretty low, but I began to see that the more carefully I planned my activities, the more successful they were. I stopped looking at life in terms of “getting back to normal” and realized that this new reality was my normal. There was no drama to eclipse the hard facts anymore.

It took awhile for me to relax enough to start making weekend plans with my friends again and be confident I’d feel well enough to attend. Slowly, I went through “re-entry” into the world of the healthy, and found my position within that world. While the wheezing and congestion had worsened over the years, they now fit in around teaching, writing, and getting to the gym. My daily chest PT visits were no longer my only contact with the outside world but were routine activities I scheduled into my busy days.

Maintenance mode, then, was largely about accepting realities that were so easy to ignore in the flurry of ER visits, CT scans, and IV lines. It was also the first time I’d really seen how skewed my understanding of “crisis” was. If I wasn’t turning blue from lack of oxygen or having some sort of cardiac episode, then that meant there was nothing really wrong, which I now see is a dangerous lack of a middle ground.

Luckily, I have an exceptionally healthy husband who helps in the ongoing process of defining things for me. Things like bronchitis, pneumonia, or kidney problems don’t faze me, but they certainly faze him. Somewhere in between my laissez-faire attitude towards anything short of near-death and his usual interaction with sickness—a seasonal cold or allergies—is the common ground I need to survive as well in maintenance mode as I do in crisis mode. The choices I make for my health no longer completely usurp the choices I want to make for my spirit and because of that, I no longer resent them.

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Spring Fever. Literally.

It’s finally springtime in Boston. The flip-flops are out, the short jean skirts are now sans leggings, and for the past week, half of my students haven’t shown up for class. I blame spring fever for some of it–certainly they’d rather be catching some sun on the Boston Common or strolling down Newbury Street than be in my 10am Research Writing course. But for some of them, I blame their absence on the other spring fever, the nasty chest/throat viral thing that’s speading like wildfire. It made its way through the dorms, onto the public keyboards, and settled in my lungs a few days ago.

What is it about the change in seasons that makes our bodies go haywire? It’s beautiful and sunny, and I am so congested my doctor didn’t need a stethoscope to hear my wheezes. It’s the same situation in the fall when it finally gets cold–mass infections. Most of my students get better in a few days, but with my immune deficiency disease and various lung diseases, when I catch things, I really catch them. I caught a bug on the plane during my honeymoon and it just went away a couple of weeks ago. My honeymoon was in August, mind you.

So spring fever brings to focus two dilemmas in terms of having chronic illness and having a professional life.

Number 1: How do I field the inevitable “Are you okay?” “Do you always cough like that?” questions I usually get? It’s easy to explain away the symptoms when we’re all sick, but I cough like that pretty much every day. I’m generally evasive since I don’t want to bring in my personal life, but does skirting the issue only pique their curiousity further? Moderation is the key, I think. I can tell them I’m sick without saying the extent to which I’m sick, which is far beyond a cold–and cross fingers they’re satisfied with that.

Number 2: How do I maintain a sense of empathy for students who miss class because they don’t feel well? I’m not talking a severe bout of flu or having seizures or any of the other things I’ve heard. I’m talking about the sore throats, the headaches, the viruses they get and pass on to me. As a student, I’ve written papers in the ICU, I’ve studied for finals while hooked up to oxygen, and I’ve taught my own classes with an IV in my arm, carefully hidden under my sweater. So I know full well that it is possible to do work when you’re sick–but is it fair to them to use that as my point of relativity? Probably not.