Tales from the Crypt…

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Contrary to a certain famous modern poet’s assertion, in my world November is the cruelest month. Okay, it’s arguably a toss up with December-February, too, but in terms of the lovely cycle of getting sick, falling behind with work, and missing family functions and/or social engagements, November is right up there with the best of them.

This past weekend was no exception: the tightened chest and spastic cough of Thursday night developed into the mini-plague that prevented me from attending a long-awaited family function Sunday morning.

(It’s not H1N1, though. Still hoping I avoid that long enough to get my H1NI vaccine.)

Anyway, I had to make a phone call early Sunday morning to let relevant parties know I would not be able to make it. My throat was hoarse and scratchy from coughing, and my voice itself was fairly faint because I wasn’t moving much air. It was definitely Crypt-keeper quality (as opposed to my other alter-voice, Darth Vadar, which is a little deeper and usually sets in a good two to three weeks later.)

My two-year-old niece loves the phone these days, and when she heard it was me on the other end, she wanted to say hello.

I started talking (read: rasping) to her as best I could, asking the kinds of questions two-year-olds are usually pretty good at answering.

Pause…pause….pause….

“Broken. Mama, it’s broken,” I heard her say.

“Not working,” she muttered, her voice growing muffled and distant as she pattered away.

Couldn’t have said it better myself.

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On H1N1, Vaccines, and Differing Views

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I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

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Disappointment: The Intellectual Opposite of Hope?

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When my agent was shopping my first book out to publishers, it was an incredibly tense time. I’d done all I could do to set myself up right, and now the decision was out of my hands. For a control freak like me, it was an uncomfortable position.

But what made it harder was how much I felt hinged on getting this book under contract. In my mind, everything else I wanted to do depended on getting this deal for this book at this particular time. The next book I wanted to write, and the book after that, and the book after that? They could only happen if this book happened. The fledgling freelance career I wanted to build out? I would have much better standing with a book under my belt. The more stable academic and research positions my newly-minted MFA hinted at? You know what they say—publish or perish. And my very identity as a writer? Well, writers write things, right? Things that get published.

Of course none of those static boundaries were true, and my life and career would have gone on had things not worked out the same way. It is easy to say that, though, because I did get what I wanted then. The script I wrote for myself, the one so meticulously reliant on each step unfolding just so, went (somewhat) as planned.

But what are so much harder—and, unfortunately, so much more common—are the times when we do plan and work towards something and set up a script for ourselves that does not come to fruition. We want so desperately to accomplish a certain goal that it becomes difficult to see ourselves in any other reality. I see this in my students who are applying for jobs, my consulting clients who are applying to schools or trying to secure agents, and of course I see it so often in the lives of patients. We want a last-ditch medication to do all the things it promises it might; we want the much-anticipated surgery to be 100 percent successful; we want that super-star specialist to give us the answers we need to hear.

We carefully construct this eventual outcome, and we cling to the promise of that better reality because that’s what we need to do to push through all the obstacles and hard work necessary to have a shot of getting there.

We hope for the best, because it is not unreasonable to hope for good things.

Because we have hope we can keep sending out submissions while the editors’ rejection letters accumulate, or the job offers don’t appear, or the letters that arrive in the mailbox are too thin. Because we have hope we work through the side effects of medications, or gear ourselves up for the major surgery and lengthy rehabilitation, or undertake medical interventions with high risk and limited chance of success.

I’ve often heard that the opposite of hope is despair. I don’t disagree with that, but I think the situation is far more nuanced. In the immediate moments of bad news, setbacks, and realizations that what we want is not going to happen, despair is real, and it is palpable. It is the moment when hope does not seem possible. It is an innate emotional reaction, one that manifests itself in different ways: tears that come without warning; numbness; a feeling of emptiness. It is encompassing and isolating. It pulls us off our center of gravity.

But there is an intellectual component to an otherwise emotional experience, and I think that is where disappointment comes into play. Disappointment is not as overwhelming as despair, but it makes demands of us. We have invested so much time and energy into one path, and it didn’t work out. Now where we do we channel that energy and momentum?

It’s a question of readjusting our expectations, and re-calibrating our goals. Whether it was getting a certain job, having a successful surgery, or any number of other realities, when we envisioned the “after,” we saw things unfolding a certain way. We have to write ourselves a new script, and in our disappointment, we don’t always want to do that. New deadlines need to be set, new strategies need to be formulated.

Sometimes, if we’re lucky, our re-writing is only temporary. Sometimes, it is life-changing.

I am often amazed at the capacity we have to hold out for the best possible outcome even in the face of very low odds: when early indications and test results don’t look promising, when other people’s envelopes already arrived and we are still waiting, when it has been three months and an editor hasn’t gotten back to us, or deep down we know we’re not really feeling any improvement on a new medication but we resolve to give it more time.

This capacity for hope is wily like that. It is stubborn, sometimes willfully so. But because of that, eventually we are able to envision other possibilities and are willing to pick ourselves up and start again.

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Static

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Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.

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Priorities

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As I sit here and type this, I am acutely aware of my work e-mail accounts that I should check, and the client I need to respond to, and that article I bookmarked this morning that could be useful for my book. I’ve neglected Twitter woefully the past couple of days, and I’m late getting my writing group this month’s submission.

Priorities.

I know it is universal, this daily push and pull between the tasks we need to do (and the hierarchy that exists when we need to do several things) and the things that in an ideal world, we’d able to do or want to do. We make countless small decisions each day that reflect this notion: to read the newspaper or respond to an e-mail, to eat lunch at your desk rather than taking a short break and getting out of the office, to look over work on the train rather than zoning out or reading for pleasure.

What I’ve come to appreciate lately is that line is unbelievably relative—what you would do on a normal day is of little significance when major crises happen. You do what you need to do when people in your life are sick or need help or experience loss, just as you throw normal routines and schedules to the wayside when you experience your own crises, losses, or disruptions. In the immediacy of the moment, there are things that simply matter more.

But that’s the obvious part. What’s more complicated is the gray area in between the everyday and the extreme, when there are many conflicting priorities. Don’t get me wrong, I don’t know a person out there who doesn’t (at least on occasion) find the balancing act of multiple priorities difficult to manage. I honestly can’t imagine how often parents must face these decisions, but I know that the hierarchy of priorities gets turned upside down when you have a family.

But I do think that any type of chronic illness adds a unique layer to an already complex terrain.

As a minor example, I canceled chest physiotherapy the other day because I was feeling terrible (unrelated reasons) and just couldn’t stomach the thought of a half-hour’s worth of clapping. I wanted rest and I wanted peace. Yet by the very next day I was much more congested and wheezing on both my inhale and exhale, and knew that not having chest PT made a difference. Do I regret the decision? No, because in that moment, other health concerns outweighed the needs of my usually demanding lungs.

Decisions that might make so much sense from a financial, professional, and emotional standpoint sometimes conflict with what makes the most sense from a physical standpoint. There are all these reasons to take on a new challenge, but sometimes no matter how many compelling reasons there are to do something, the difficult answer comes down to this: what is good for the body and the mind do not always correspond. Sometimes the long-terms physical consequences of decisions are not worth the short-term gratification.

Of course, the reverse holds just as true. Sometimes it is more important to take the risk, to have that experience, than it is to miss out on it. Speaking as a girl who needed multiple doctors’ letters and lot of legwork to prove I was healthy enough to travel abroad when I was accepted into an Irish university, I can vouch for that.

And sometimes it is more important to be there for someone else even if it comes at the expense of your own body or comfort, because those memories are what people carry with them. Those memories are what you carry, too.

This all makes me think about I conversation I had on Twitter about H1N1 vaccinations recently. When asked how I felt about getting one, I said that it made sense for my individual circumstances—I am in a high-risk category, and all infections hit my lungs harder to begin with. I’d rather deal with the consequences of the shot than take a gamble with a flu virus that can cause serious (sometimes lethal) secondary lung infections.

But, these are my circumstances and my health priorities and might not apply to you for your own individual reasons.

In the end, I think most of us face so many choices that force us to weigh benefits and risks. From choosing time with friends over work to choosing certain medications over others due to different side effects, very little is without calculation…and the line is always changing.

But that’s what keeps things interesting, right?

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These Three Things

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It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

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More Narrative Medicine and Organized Chaos

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I figured if I am going to write about the state of “organized chaos” in which I’m trying to just make things work, I should provide some details.

Behold:



See that line of writing at the top of the wipe board? It really does say “There is nothing as clarifying as a deadline,” and I really do find myself looking up at it, particularly during those very late nights or absurdly early mornings when the clock and my physical capacity to finish the job are engaged in head to head combat.

The Stickies application on Macs? I would be lost without their color-coded power to organize my day, my thoughts, my lesson plans, and my research questions.

And yes, we have bookshelves. Bedrooms and home offices and even whole closets full of bookshelves, but after my marathon summer of research, we need more. Plus, I like to have my files and sources close at hand when I’m writing.

Anyway, looking at my slightly embarrassing stack of books reminded me of a post I wrote on narrative medicine. Plus, we just happened to talk about Jerome Groopman and Atul Gawande in one my classes today, and it occurred to me I haven’t updated my list of recommended titles in a long time.

Not all of these neatly fit the narrative medicine bill, but they are all about the human experience of illness in some way or another, and all are fascinating:

Carl Elliott’s Better Than Well: American Medicine Meets the American Dream: a really interesting philosophical look at not just cosmetic surgery but the whole idea of the self we present to society and the society that passes judgment on the physical self.

Roy Porter’s Blood and Guts: A Short History of Medicine: I love everything I’ve read by Roy Porter, including his 800-page The Greatest Benefit to Mankind: A Medical History of Humanity. This slim volume packs a ton of information on medicine throughout the ages in a compelling, easily digested way.

David Rothman’s Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making: So this one is a bit more dense and scholarly than others, but it is a great read. For me, it helped me contextualize post-World War II medicine and the development of modern clinical trials, research, and patient rights. I have a much better grasp of current ethical situations and challenges now that I have historical context.

Dorothy Wall’s Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome: Wall does a skillful job blending personal experience and anecdotal reflection on living with Chronic Fatigue Syndrome with extensive research and interviews on the political and scientific controversies around naming, diagnosing, and managing the condition.

I’m always interested in new titles, so feel free to add your own suggestions to this list.

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Just Make It Work

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One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you’re not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I’ve collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.

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In the Headlines, In Real Life

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My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

***
Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.

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On Invisible Illness

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This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that’s what you do when someone you’ve known for about 90 seconds is thumping your chest and it’s dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

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