And I do mean fresh, considering this week’s theme is “New Beginnings.”
Jenni Prokopy, founder and editrix of chronicbabe.com, “a site for young women with chronic illness who strive to live well in spite of health-related limitations…to be babes!” did a great job compiling diverse and compelling perspectives on fresh starts–with spring on the horizon, it’s perfect timing!
Re-Calibrate, Then Restart
“Um, you’re going to re-calibrate your definition of ‘feeling sick.’ Starting now,” one of my doctors said to me this week, clearly not impressed with my nonchalance.
The thing is, I wasn’t even being nonchalant. Not purposely, anyway. I was simply conditioned to be oblivious.
I’ve said before how so many aspects of living with chronic illness are universal—no matter what your particular symptoms or conditions are, there are some static themes. The more I write and the more experiences I cull together from other patients, the more firmly I believe this.
But it’s larger than that. So many things about living with chronic illness are universal, period. Whether you’ve been sick since birth or have never had more than a cold your whole life, still emotions and patterns resonate.
Recent events and twists and turns in my health status have made this especially clear.
Example #1, Stuck in a rut-ness: Is it me, or is the tendency to get stuck in a routine or pattern directly proportional to the longer and colder a winter is? Indoor workout routines get dull and less effective, piling on sweaters and layers of pants gets boring and repetitive, getting up in the morning when it’s still dark gets old fast. Yet there’s not much we can do besides hit the “repeat” button and keep on going.
Personally, my winter rut has been one punctuated by infections. While respiratory infections are an occupational hazard of being me, this winter has been beyond the norm. Since October, I haven’t gone more than 10 days without an infection. Bacterial, viral, ones that fester in my lungs and ones that invade my upper respiratory system—it’s definitely been an equal-opportunity season.
So hopefully it’s somewhat understandable that during the past two weeks when I felt exhausted, feverish, and had muscle and joint pain that I attributed to something else (more on that in a minute), it didn’t occur to me to do anything except go to work and keep doing what I needed to be doing? And that it didn’t occur to me that it could be the flu?
“I’m just gotten so used to feeling like I have an infection that I no longer stop to think about it too much,” I told my doctor. “It’s beginning to feel like normal, or at least not that sick.”
Hence the “re-calibration” comment, some in-office nebulizer treatments, and orders to stay in bed for several days.
“But can I teach my last class before spring break first? It’s in an hour,” I said.
She was not amused.
Example #2, Adaptation and Loss: Think about a loss in your life. Was it a bad-break-up? A close friend or family member moving away? Everyone’s experienced what it’s like to have a constant disappear from your life, and the adjustment period it takes to get used to its absence. Sometimes, it isn’t till you stop and realize you’re no longer consciously thinking about it every day that the absence is real.
Allow me to turn this around a little bit. Four years ago when steroid withdrawal caused my adrenals to crash, constant muscle pain and overwhelming fatigue became a part of my life for the next three years. The burning, cramping pain kept me awake at night and when my legs turned to “concrete” mid-step, I could be stranded. I got used to living like that, to never knowing when my body would halt, to walking slowly and trying not to wince.
My recovery was gradual, very slow, but as the months and years went by and my adrenals recovered, I inched closer to the baseline I had before the crash.And before I knew it, I wasn’t even thinking about that kind of pain anymore. I wasn’t planning errands and factoring in the “concrete syndrome.” I was just being me, and I wasn’t even conscious of the change, of the absence of pain anymore.
So it wasn’t until that familiar burning pain, that last step of the staircase that seemed so far away, that slow, sluggish gait came back a couple of weeks ago that I realized how far I was from that place four years ago—and how terrified I was of ever going back to that constant. (The IV infusion of solumedrol every six weeks for years was also something I was loathe to repeat).
The end result? My adrenals are functioning a bit lower than they should be, but they’re chugging along. Since my adrenal depletion is the result of infections this time around, my doctor is confident they will recover on their own, though it may take some time. And while it may take several more days to settle down from the flu, that too will pass.
So as I face down a spring break filled with catch-up work and recuperation, I have some goals. I need to calibrate my idea of what being acutely ill feels like and start fresh—this means not ignoring fevers or assuming I know what’s wrong when I don’t. No more ruts. I also need to squash back my fear of the adrenal situation, because it is mild and temporary and I have the knowledge and resources to do what my body needs.
It might not be spring for several more weeks here in Boston, but I’ve done some mental spring cleaning.
After all, spring is synonymous with renewal, right? And that’s a universal.
I’ll start with the preface that I know I am fortunate to have health insurance. It isn’t the best insurance out there but it isn’t the worst and relatively speaking, I know I don’t have much right to complain.
But.
Obviously when we’re talking about health insurance you know there’s a “but,” right?
I’ve long since accepted that the glory days of my past insurance life are over, the days when my Daily Chest Physiotherapy was covered, you know, daily, and routine doctor visits didn’t cost hundreds of dollars. I use Express Pay for my many refills and pretend not to notice what the amount due actually is, figuring I’ll just deal with the full blast at tax time. I take what I can get.
Still, it’s impossible for me not to get fired up at the state of healthcare, at the exorbitant cost of heavily marketed blockbuster “me-too” drugs, at the futile feeling that preventative care is the most important thing we can be doing but is still not a priority to many. I will return to this line of thought in one moment, rest assured!
Recently, I had my own minor little indignation. I picked up my refills and a generic prescription for allergies/sinus congestion I’ve had since 1996 cost 10 times what it did last month. Now that was an Express Pay bill I couldn’t ignore! I made many phone calls to the insurance company and the prescription benefit people and actually ended up conferencing both parties since their knowledge of what the other was doing was so woefully inaccurate. I found out that as of January 1, the medication was no longer covered, despite the fact that we pay extra each month for “premium” prescription coverage and despite the fact that drug is listed on the company website as the “preferred drug.”
The real kicker? No other drug in that whole family is now covered. At all. Huh? Now, I realize that of all my meds it’s the least serious one. It’s not like they took away my thyroid medicine or my heavy duty antibiotics or my refined nebulizer medications. The world won’t end. But, as I said to the woman on the phone, it doesn’t make much sense. Keeping my sinuses clear means less gunk spreads to my lungs and lodges there, which in turn means less need for massively expensive antibiotics and even more expensive hospital trips.
Go figure.
Anyway, just as I was stewing away at the arbitrary and exhaustive ban of all medicines relating to sinus congestion, I checked my inbox. It just happened to be full of links and resources relevant to my position here—and yes, it really happened this way, as contrived as the timing may seem.
So, back to my main point here: Information is power. For all of you who feel frustrated, who are nursing your own indignations and outrages, who want to know what’s really going on with your healthcare and what you can do about it, I offer up the following suggestions:
PharmedOut is an independent, publicly funded project whose goal is to empower physicians to recognize and counteract inappropriate pharmaceutical promotion. Last week they released publicly a slideshow called “The Physician-Pharma Relationship.” Check out the press release and slideshow here.
Not on the Center for Science in the Public Interest’s e-mail list? Click here to check out the site and sign up to get regular summaries of what’s going on in the world of science and health delivered to your inbox. From disclosing financial conflicts of interest in research studies that affect your life to the latest analysis of FDA policy changes and announcements, the Integrity in Science Watch e-mail is a treasure trove of the kind of information you need to have but can’t always get to easily.
It’s no secret that healthcare is one of the most pressing political issues out there. Election year scrutiny got you thinking? Visit the Partnership To Fight Chronic Disease, a great resource that is a “national coalition of patients, providers, community organizations, business and labor groups and health policy experts, committed to raising awareness of policies and practices that save lives and reduce health costs through more effective prevention and management of chronic disease.”
As for me, I’m planning my next phone call to try and remedy this pill situation. Luckily I’ve got plenty to read while I wait on hold.
Were it not for the steady stream of slushy rain, the flood watch, and the generally miserable weather last night I wouldn’t have considered a Valentine’s post at all. That’s how cringe-worthy I find the obligatory Valentine’s post. But we’ll return to epics floods and wild winter weather in a moment.
First, a quick update on the great plague of 2008:
I can walk. And talk. At the same time. And, without coughing till I throw up or pop blood vessels across my face that even the hardiest concealer can’t hide. This is progress, people. There’s a long way to go, to be sure, but things are more manageable.
Now, back to winter floods. Last year, February 14 fell on a wretchedly damp, raw, icy day. In fact, our city street flooded and then froze, leaving all the cars encased in a couple feet of ice for several days. I remember this vividly because the walk to the subway was an exercise in survival and cabs were nowhere to be found.
I also remember sitting on the nearly empty train car (apparently everyone else decided dinner out wasn’t worth braving this weather, but we weren’t so faint of heart) with my scarf-ed, glove-ed, wind-whipped reflection staring back at me. I was so engrossed in what I was telling my husband I didn’t notice how quiet he was. I was really excited about new research on improved diagnostic measures for PCD I’d read about earlier that day. It was technology I’d already used at my doctor’s office, but I was pleased to see its efficacy confirmed and hopeful that widespread use of it might mean easier diagnoses for other patients (PCD is notoriously hard to diagnose).
Later, as the various courses of our Valentine’s pres-fixe dinner arrived, I was still animated and excited. He was still quiet. I was oblivious, he was frustrated.
Turns out, Valentine’s Day dinner might not be the best time ever for research chat. (Did I mention the obliviousness?)
It wasn’t that he felt we talked about PCD (or any of the other conditions) too much—day to day, there really isn’t much to say. You cough, you wheeze, and with any luck you breathe okay and manage to avoid catching an infection. There’s not much riveting conversation to be had about it.
And it wasn’t that he felt the new research was scary or depressing—on the contrary, it was full of hope and promise, and intellectually he understood why it was encouraging.
This information was good stuff, right? So where was the problem?
But on a night that’s supposed to be about us, the side of medicine, however positive it was, that accompanied our meal was less than welcome.
On a night that’s supposed to be about us, PCD and all its potential, good and bad (and with progressive diseases, the long term potential for bad is certainly a legitimate issue), was also a reminder that someone he loves is sick and he can’t change that or fix it.
And when you love someone, isn’t your first instinct to take away whatever it is that causes them pain or discomfort? (And would you want a reminder, however benign, that you can’t?)
Message received. Timing is everything.
This year is different. The epics rains ended last night and today is actually sunny. We’re driving to our restaurant this year because our reservation is late and now we have a driveway, meaning we don’t need to take the subway because our car is iced in and we don’t want to circle the block till midnight looking for a space.
And I don’t happen to have any new research or facts to share, but if I did, I’d save quoting the statistics and waxing poetic about the methodology for tomorrow.
We won’t need to talk about how I feel, because he will be able to tell by my complexion and my eyes and the way I inhale when I talk exactly how I am feeling and that unspoken understanding is better than any conversation.
Okay, so I admit some of the old familiar demons started surfacing last night:
Anxiety that in the midst of many deadlines, I am bedridden with another infection. Or at least couch-ridden, where I balance my laptop on my stomach and type when I am not coughing.
(And yet even as I wonder how I’ll get it all done when I can’t breathe or sit up, I’m composing e-mails in my head, plotting out the next development or venture, a weird inverse relationship between how I am feeling and how much I think I should be able to do.)
Frustration over the fact I will be canceling plans for the weekend, and hesitancy over making more plans in the near future because I’ve had to cancel far more engagements than I’ve made it to lately.
(I’ve been in this cycle so many times. I’ve written about it and even been interviewed on the radio about it. Infection after infection, cancelled plans after cancelled plans, and soon the fear of letting people down and having to say “I’m sorry, but” starts to creep into my thoughts.)
But before the anxiety and the frustration reached full hilt, I came across this post on gratitude at Sick Momma that gave me pause (thanks for the kind words, Aviva!). Instead of thinking about articles on deadline and plans I needed to break, I tried to consider things from a different perspective.
I am grateful for friends who understand when I disappear for weeks or months at a time, who know when I say I am sick there is nothing I can do about it and that it has nothing to do with not wanting to see them, who are as happy to get coffee or drink tea as they are to go out and get drinks, and who always redeem rain-checks.
I am grateful for a rock star of a doctor who e-mails me back right away, and for a wonderful hospital only a few minutes away when I need it most. I’m grateful to live in an area where cutting-edge technology and research is at my disposal.
I am grateful for knowledge. People with PCD who are only a couple of decades older than me grew up with so much more mystery. It may have taken awhile, but at least I now know what’s wrong, what to expect, and how to prevent further damage.
I am grateful for the community of writers, experts, mentors and other professionals I am privileged to know, people whose wisdom and passion inspire me.
I am grateful to be building a career where even if it means looking at the computer screen over the top of a nebulizer mouthpiece or typing when I’m in a prone position because I’m just not getting oxygen, I can still get work done and still do something I am passionate about. I am also grateful for my students, who are thoughtful and committed, and who teach me a lot about healthcare.
I am grateful for a supportive family who brings me soy lattes and chicken soup and instinctively waits by the phone in case a “hospital call” comes their way. I am especially grateful for a husband who anticipates my needs better than I do, who can tell by the tone of my voice how much air I am moving, and who brings the world to my doorstep when he knows I’m feeling isolated by illness.
Well, never, in my world. It’s on my mind this weekend because instead of seeing friends like I had planned, I spent most of my time on the couch debating when to use my nebulizer. Was it the remnants of the New Year’s infection? The rumblings of something new? I’ll know by the end of the week.
There’s definitely a theme to my winter survival mode: a brand-new, extra large size bottle of hand sanitizer is on my nightstand. A mini version rests comfortably in my car’s consol, another one lounges in our kitchen drawer, yet another adorns the downstairs bathroom, and a lovely raspberry-scented model is stowed away in my briefcase, where it is never more than five seconds from me.
And with this rogue band of weapons, I attempt to stave off the runny noses of toddlers with daycare colds, the spraying sneezes of commuters on crowded subway cars, the coughs and infected hands that shuffle all the papers toward me in class, the germs flying around the hospitals and doctors’ offices I frequent. Before he leaves my house every day, my chest physical therapist uses whichever bottle is handy so he doesn’t spread my germs to any other patients, and I am grateful for his vigilance.
I will admit I’ve always had germaphobe tendencies. I’m the girl who layers toilet paper on the seat in public restrooms and takes an extra paper towel to shut off the faucets and open the restroom doors after I’ve washed my hands. At one point in college I even wore flip-flops in the shower, and it wasn’t a community shower in a dorm. It was a shower in a 5-person townhouse that was cleaned weekly.
Trust me, if you had my immune system, you’d probably be the same way. Well, maybe close to it, anyway. You’d at least be into the hand hygiene.
I caught a cold on the plane ride out on my honeymoon, which took place in the summer. By April of the following year, I’d finally calmed down the lingering plague that touched off during that one plane ride. My niece had a slight earache when she slept over one night. Three days later, she was fine. Three days later, I had a ruptured eardrum, a steady river of goo streaming out of my ear, and an infection that wasn’t responding to IV antibiotics.
Um, yes. And I’m being honest when I say I’ve come a long way since I was a kid and I had strep in my ears and my knees, staph infections that required prolonged stays in isolation, numerous surgeries, and had something going off to be cultured literally every week.
For most people, a cold is synonymous with misery—congestion, sore throat, cough, poor sleep, the whole works. And a cold is every one of those miserable things.
For me and anyone else with immune or respiratory issues, a cold is synonymous with several weeks (or months) of sickness, hospitalization, multiple new medications, and protracted annoyance. It will spread to my lungs and settle down for the season, and spread to my ears and camp out there for months. It will linger and fester and mutate and replicate, and it will end up being something nastier and greener than the simple cold it started out as…but no matter what, it is never just a cold.
I may look like your typical overzealous germ freak but I prefer to see it as being proactive.
And because I love toddlers with their runny noses and wouldn’t trade the interaction with students and prefer taking public transportation to wasting gas and jostling for parking spaces downtown, I will arm myself with colorful bottles of hand sanitizer and brave the outdoors.
***
Switching gears from what everyone experiences—colds—to what few people experience, there was an interesting read in Newsweek’s “My Turn” column recently about living with a rare disease. The writer posited that living with something no one else around you has is a “little like being an orphan” and in some ways, that’s true. When you have something that only affects a few thousand people (the National Organization for Rare Disorders classifies an “orphan disease” as any which affects less than 200,000 people), you certainly don’t see huge fundraising campaigns, national events and color-coded ribbons.
You have to seek out whatever community exists, or you have to create your own. I don’t know a single person with PCD (and only one with bronchiectasis) in real life, and until I found Yahoo groups and other online forums for patients, I had nothing to compare my experiences to except what I knew about from cystic fibrosis patients.
And yet there are literally millions of patients living with rare diseases out there, so connecting and establishing those ties is so important.
Because I also live with conditions that many people have, I also know that while it’s harder sometimes to have something no one’s ever heard of and can’t even pronounce, the basic experience of living with a chronic condition is universal. The ups and downs, the setbacks and the progress, that fundamental tension between what you want to do and what you can do remains unchanged.
***
Speaking of setbacks and progress, Jenni over at ChronicBabe has a put together a great recap and response to the NYT’s recent article about fibromyalgia, Lyrica, and whether or not FM is real. Whether you have FM or not you need to check it out!
It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…
…And then I plunked down at my computer and dove into work, excited that I had such an early start and that a whole day to catch up on projects and hopefully get ahead on others stretched before me.
Oh, how times have changed.
My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.
Considering how many weeks of school I missed every single year due to my illnesses, not everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.
If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.
Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.
And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.
Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.
True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.
***
Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.
I know healthy people who say things like, “I don’t believe in taking medicine” or “I don’t like putting anything in my body besides aspirin.”
(These are frequently the same people who, when asked if they’ve ever been a hospital patient, are wont to say “Well, not since I was born,” causing me to shake my head in wonder. Who knew such people existed? And that I would one day marry one?)
My unspoken reaction is always “Good for you.” I realize how incredibly flippant that sounds, but I don’t mean it flippantly at all. It’s refreshing to be reminded that there are people out there—people in my life, even—who are healthy, who do not have any conditions that require regular medication.
I mean, who wouldn’t want aspirin to the only occasional remedy you need to live your life and get done what you need to do?
I will admit I am a bit blasé sometimes about taking medicine. I never skip a dose or anything like that, it’s just not something I think about. It’s something I just do, part of my daily routine for literally as long as I can remember. On a given day, I take no less than eight medicines (good times) and no more than fourteen (less good times). I have cut out four medicines altogether in the past few years, which pleases me.
I have tested and charted and experimented to make sure I am not taking any medications that I could do without, because just like my healthy counterparts, I really don’t like putting anything unnecessary in my body, either. I don’t like the never-ending co-pays, the refills, the side effects like a racing heart, dizziness, feeling jittery, brittle bones, enlarged organs, endocrine damage, etc.
But I dislike respiratory distress, respiratory failure and other phenomena even more.
Antibiotics are a regular part of my medical arsenal. And I do mean regular. In fact, they are indispensable. Remember that New Year’s Eve day infection? It got worse and worse, to the point where I was dizzy from not getting enough air, my peak flows barely registered, and all the nebs and chest PT in the world couldn’t cut through the infected mucus lodged in my chest. I basically didn’t leave my house for eight days.
The only reason I am even functioning at half capacity right now? I brought into rotation an antibiotic I hadn’t used in awhile. (Between the nature of what I grow and the fact I’ve been on them so long, there are only a few out there I can rely on). Even with them, I teetered on the edge of the hospital for a couple days, and without these antibiotics, I have no doubt I would be in the hospital right now.
Antibiotics are a hot-button issue. The big things I hear from my students and people I know in the trenches? They are over-prescribed, they are given to demanding patients or parents whose children have colds and viruses when they don’t need them, they are given to people who don’t complete the proper course of treatment once they start feeling better. In an age of multiple drug resistant bacteria, “super bugs” and emerging infectious disease, this is problematic, to say the least.
Believe me, I am just as worried about the misuse of antibiotics. Does that sound weird coming from someone who basically lives on them? I’m even more cognizant of it precisely because of how much I have to rely on them.
And yet because it is so normal for people like me to take them, I rarely stop and think about what I am putting into my body when I take one. It’s another part of the routine. But I should give them the respect for the formidable force they are. After all, look at this partial list of “less common” side effects for my current antibiotic:
“…Abdominal pain, abnormal dreams, abnormal or double vision, aggressiveness, agitation, anemia, angina, anxiety, asthma, back pain, blood abnormalities, blood clots, changeable emotions, chest pain, circulatory failure, colitis, coma, confusion, depression, difficulty in or obstructed breathing, difficulty concentrating, disorientation, dizziness, emotional or mental problems, exaggerated sense of well-being, fainting, fungal infection, gangrene or other infections, gas, genital infection and itching, hallucination, heart attack, heart failure, heartbeat irregularities, high or low blood pressure, high or low blood sugar, hives, impaired thinking, indigestion, intestinal bleeding, intestinal inflammation or blockage, irregular heartbeat, itching, kidney disorders, lack of muscle coordination, liver disorders, lung problems or inflammation, muscle pain weakness, pancreatitis, paralysis, pneumonia, rapid or slow heartbeat, rash, seizures, swelling of face or extremities, swollen tongue, tendon inflammation, tumor, vaginal inflammation, vertigo, vomiting, yellowing of eyes and skin…”
Yikes. A healthy fear is now officially instilled.
Along with a huge dose of gratitude that they still continue to do what I need them to do.
Read this Salon article, “The Baby I Turned Away.” Go ahead, click away from my page, read it, gauge your initial reaction to it, and come back to me. (C’mon, have I ever given you a bad reading recommendation?)
I couldn’t not write about this, but even after reading it a few times, sleeping on it, reading it again, wading through the letters posted, I’m still all over the map. Here’s what I’ve come up with so far:
Whether you think the author, Jessica Berger Gross, is a superficial “baby shopper” lulled by a romanticized ideal of India and motherhood or a woman who simply knew her limits and made the right choice (most reactions tended to split down these two lines), you have to respect the honesty here. It’s not easy to lay bare your most painful decisions, your fears, and your limitations, especially with such an emotionally charged issue.
I’m not interested in dissecting, praising, or bashing the author here. I’d rather explore the whole idea of choice. Choice, both within the context of this one article and in much broader terms, is a luxury. For example, the author had the option (read: financial security) to pursue an expensive foreign adoption. That alone is not something every person who wants a baby but cannot have one on their own can do, and she knows they are the “lucky ones.”
But so often the luxury of having a choice brings so many additional possibilities and consequences. In this case, the ability to pursue this adoption put them in the position to face tough, tough questions. As the author writes,
“I wished we were different people, the kind who would welcome this child, welcome the risks, with no questions asked. I wanted to help her, to make her OK. But what if I couldn’t? Could I love her anyway? To a parent, this question must be unthinkable. You love your child no matter what, accepting all limits and gifts. But we had a choice, and the magical thread that had spun us around this child for the previous two days was beginning to unwind and tangle.”
Ahh, the downside of choice. It forces us to confront our weaknesses, it shatters our perceptions of perfection.
Obviously I am approaching all of this from a different perspective than a lot of people who either applaud or condemn Gross. I’m not the parent of a special needs child, nor am I currently pursuing an adoption. But the whole idea of what is “normal” or “healthy” (Editor’s note: Go on and read this, too–it’s relevant to my position) and what happens when the future we envision is far different from the reality we inherit is an important one to me. And I think whether you’re talking about disease or developmental delays or emotional problems or whatever the special circumstance may be, it all boils down to the same fundamental debate.
What do you do when life doesn’t conform to your plans?
On the one hand, this sentiment from a Salon letter-writer, Late Again, gave me pause:
“Why would you CHOOSE something with so much heartache if you didn’t have to? Thank god there are people who do. But, really, most of us wouldn’t choose a difficult path given an alternative. The major advantage of adoption over biological birth is the notion of choice. Good for you all if you would check the box on the adoption forms that says “I’ll take anyone.” Most people wouldn’t. This is just one view…”
It’s a good point to raise in the discussion. Objectively, why take the harder road when you don’t have to?
But (and you knew there was a “but” coming) could you be cheating yourself out of unforeseen positives on that road? Could you be selling yourself and your potential to meet challenges short? I don’t know. There are a lot of parents out there who are much better equipped to speak on this, who have spent time in the trenches.
It’s tough. If I have a child, of course I wouldn’t wish for the child a life of sickness. Who would? (It certainly wasn’t in my parents’ plans for me, but then again, neither was all they have gone through and endured.) But I would be the first to say that that child’s life would be undeniably rich and fulfilling even in the face of illness. I’ve never had the luxury of health, not for one day on this planet, but I do not lament that things aren’t any other way.
The absence of choice is just an important facet of this discussion. You can’t always control the human body—who can conceive and who can’t, what diseases can be prevented or detected early and which ones cannot; you can plan for and hope for and expect good health (and all the accoutrements that loaded term brings) but that does mean it will happen, or that you have any say in that.
Sometimes you roll with the punches, and you do not have a choice. Challenges present themselves, even ones you want no part of, and somehow you meet them and keep on rolling. But if you’re lucky, you’re too busy living your unscripted life to even notice what you can or can’t choose.
Pragmatically, not everyone is this lucky. I know that. While I do not have many answers or conclusions, just lots of questions and speculations and thoughts that clearly run in circles here, I know at least one thing. I, too, am one of the lucky ones.
Before I take a brief look back at 2007, here are some recent headlines to think about as we move towards 2008.
The relationship between Pharma and physicians is a complicated and often controversial one, and I’ve noticed a lot of media coverage about it recently. Check out this Slate article about off-label prescription use—it pits the instinct of the physician against the “industrial-government-insurance complex of medicine’s last quarter-century” and is an interesting read, especially if (like me) you’ve been prescribed medicines for off-label uses before.
In a different angle of the Pharma-physician phenomenon (oh alliteration, how I love thee), this Boston Globe article discusses tough new policies limiting the amount of interaction and influence drug companies have with doctors at UMass Memorial Medical Center. Sounds promising, but its feasibility is a consideration.
Now that I’ve taken stock of the last week’s headlines, it’s time to reflect on some of the headlines that have appeared on this site. Perhaps this retrospective indulgence is merely that, but with a tiny bit of hindsight, I think I would categorize 2007 as a year of awareness—of being aware of how chronic illness affects those around us, of being aware of what others are going through and what lessons can be taken from that.
There have been ridiculous tales of medical mishaps and comic calamities (okay, I will stop with the alliterative abundance here, but who said anything about assonance?), and plenty of new voices who have made me laugh and impressed me with their grit.
There have been moments of profound grief, at once intensely personal and wholly universal, as well as moments of humility in the face of someone else’s pain. I’ve realized how much I owe the healthy one in my marriage, and how precious timing is when it comes to the people I love.
I’ve looked at books and the process of storytelling itself for inspiration and understanding. I’ve had some personal highs and I’ve only been in the hospital a few times, a different kind of personal high indeed.
From gluten wars to medicine and politics, it’s been a busy year for acknowledging and understanding disease and its many manifestations in our lives.
May you all have a happy and healthy 2008!