Category Archives: Family

Giving Thanks

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This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about.

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite.

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

Bed Rest, Boundaries, and Balancing Chronic Illness

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I am all over the place these days. I’d like to say some of it can be chalked up to pregnancy hormones, but even my husband has concurred I have not been too hormonal this pregnancy (at least not since the first trimester!). That, and, well, things have been a little chaotic and the usual push and pull between life and chronic illness is more pronounced than ever. I am a conflicted jumble of emotions.

In the aftermath of the major health crisis I wrote about, I want to thank everyone for your kind thoughts and good wishes.

Out of respect for privacy I don’t want to divulge the specific details of my mother’s brain injury here. However, since it greatly affects me, I do feel is appropriate to share just that part of things.

She is making progress each day. For that, we are all incredibly grateful. But it is a long road ahead of us, one with many physical and emotional challenges. Having been an ICU patient more than once myself, I can say without hesitation it is much harder to watch someone you love struggle and suffer than it is to be the one in the bed. That’s my experience, anyway.

Each milestone is reason to feel good, but some days are really difficult for each of us, as they certainly are for her, and each setback is jarring.

I want to be the daughter I normally am in health crises, the one who visits the hospital and is there when she wakes up and can sometimes, just sometimes, make things a little better.

But right now, what I need to do to be a good mother to the little girl growing inside precludes being that daughter. Remember how I mentioned third trimester risks and worries when I covered a high risk pregnancy by trimester?

Well, two days into my third trimester the blood pressure issues I’ve had for a little while got worse and I was admitted into the hospital (yes, the same hospital we’ve frequented a lot this month because that’s how we roll), diagnosed with PIH (pregnancy-induced hypertension), and released on restrictive bed rest (bathroom/shower only).

So, seeing my mother is out, and I miss her. This has the potential to be a very long seven weeks or so—even before this pregnancy complication, the high-risk nature of our pregnancy and my existing health issues are such that 36 weeks is our gold standard, the benchmark we’re fighting hard to reach, and the benchmark we obviously hope and want to surpass.

Things could be a lot worse for my mother and for me, I know. And most importantly, the baby is doing fantastic; she’s ahead of the curve for growth and was called feisty during her biophysical profile. Thankfully, the problems in my body have not affected her, and my diligent, proactive medical team plays a large hand in that.

But, it is an emotional time of highs and lows, of joy and grief, of gratitude and frustration. It is such a simple word, but I am sad a lot right now, even in the midst of being so incredibly happy and excited. In the very same moment I have tears in my eyes about my family’s situation, I will feel my baby girl and automatically smile, the tears parting around my mouth.

What’s better, to have terrible things happen at the same time as wonderful things so the good buoys you up from the bad, or to have them happen in isolation so the former does not mar the latter? Since we rarely get a choice, I suppose it is not a productive question to ask.

I love feeling the baby and try to appreciate every single moment I am pregnant. But we’re also anxious about keeping her safe and while I don’t want to rush through this time, especially since it might never happen again, I think both of us also want to fast-forward several weeks just to make sure she reaches the end goal soundly and without further complications.

In another type of push and pull, the bed rest that is so good for the baby and the blood pressure is decidedly not good for my lungs, which need to be stirred up and moved around to prevent infection. It’s a negotiation I need to work out as the pregnancy progresses, since problems in my lungs most definitely mean problems for the baby.

In another amusing twist of timing and irony, my research-intensive book is due one day before the baby’s due date. On the bright side, I do not need to worry about getting bored while on bed rest.

Right?

Anyway, I am worried I am not expressing myself clearly, worried that reality of being grateful and positive while also feeling frustrated muddles the feelings. But it is possible to experience both at once, as confusing as it feels.

In the end, focusing on the good is the most important thing I can do, so perhaps I answered my own question. There is so much to feel hopeful about, in spite of sadness. I am so proud of our baby, proud that she is thriving and growing so well, proud that she is feisty because she will need to be.

I can’t wait to introduce her to my mother. (But I am willing to be patient so baby, stay put for a good long while, okay?)

Who Would I Be Without Illness?

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For this week’s Patients For a Moment, founder Duncan Cross asks the question,

Who would you be without your illness?

He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.

I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.

Who would I be without illness?

When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.

While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.

It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.

Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.

There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?

What would it be like to live a life that wasn’t always in a state of catching up?

Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?

And yet…

I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.

Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?

I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.

That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.

There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.

I would still be a stubborn pain in the neck.

The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.

For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.

And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.

Grateful…

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Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

News, Updates, and 2007 At a Glance

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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!

’Tis the Season…?

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I’m spending the day in the hospital, waiting for someone I love to get out of a long surgery. I came prepared—laptop, headphones, research I should be doing, and of course, several glossy magazines. (What can I say? Distraction is the best antidote for worry). I noticed a definite theme running through all of the magazines—this is the season for stress. There were tips on stress-free shopping, stress-free entertaining, stress-free family functions, and stress-free travel.

It made me think of a recent post I wrote about stress and illness and the tenuous relationship between the two.

Just in case I haven’t already hit you over the head with it (let’s be serious, if you’ve read the other post, you know my position), I believe in the distinction between stress causing illness and stress exacerbating illness. As in, stress did not cause the genetic respiratory condition responsible for so many hospitalizations—my suspect genes did. As in, stress did not make me cough for 17 hours straight and go into respiratory failure, but 20+ years of the wrong treatment for the wrong disease certainly contributed.

Did stress play a role in making the infections and recovery worse? Sure it did. Stress takes energy away from recovery. I’ve seen stress make diabetic blood sugars skyrocket, I’ve seen stress make arthritic joints ache with more severity, I know this relationship is a strong one.

As firmly entrenched in my position as I am, my husband said something the other night that gave me pause. In speaking with someone else about my health, he mentioned that I was much more stable the past few years because of the lifestyle changes I’ve made. “Your schedule in college would have made the healthiest person run down and sick,” he said.

He had a point. In college I worked anywhere between 30-40 hours a week on the campus newspaper (usually from 5pm till the middle of the night), got up early to fit in five courses a semester, interned another 15-20 hours a week, and did lots of other random stuff. I was either running around on 3 hrs of sleep and heavily over-committed, or I was an inpatient.

For three years now, I’ve proudly asserted that the reason I am in the hospital less often and for shorter periods of time is because I finally have the right diagnoses for several of my health problems. I’m getting the right kind of preventative treatment (daily chest PT), I’m on the right medicines, I’m seeing a doctor who specializes in what I have. I’ve stopped the vicious cycle, and better understand how to cater to my persnickety lungs and deficient immune system. I firmly believe if I hadn’t gotten this diagnosis and wasn’t doing all these things, I’d still be making trips to the ICU. It surprised me that my husband hadn’t factored this into his conversation. To me, it is all the difference in the world.

And yet, I have made a lot of lifestyle changes. I don’t survive on three hours of sleep per night (adrenal failure makes that one pretty impossible). I am not so desperate to prove I am not sick by taking on too much. I’ve made sacrifices and compromises both financially and professionally to ensure I am not in that vicious cycle again. I’m trying to set myself up now for a future that while promising, is not as certain as the present.

So there is some truth to what he said, certainly. I’m not sure I would have made those changes, would have matured in the same way, if I hadn’t had the diagnostic breakthroughs. But I also believe 100 percent that if I were still living my life the way I used to, I would be sicker. I’d be more run down so infections would hit me even harder. This is not wisdom or enlightenment so much as it is common sense, and I think it applies to anyone, regardless of health status.

(And yet if I were to run into a certain doctor from my past today, the tiniest part of me would want to tell him: It’s the holiday season. My grades are due in two days, and two huge freelance projects were due this week. I just sold one house and bought another (its own unique brand of home inspection-acquired stress) and my life is half-packed, the boxes stacked and ready to move three days before Christmas (good timing, much?). My computer died in the midst of the major deadlines, I’ve had the plague since sometime in July, and someone I love is having invasive surgery as I type. If I were to pick a stressful couple of weeks, it would be these.

And yet I am breathing just fine, thank you. Stress, huh.)

But of course I wouldn’t say it. I would nod a hello and go on my way, my indignance tempered by gratitude that at least I now know what’s wrong, and I know what choices I should make to keep me well.

Giving Thanks Recap (Straw included)

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Okay, so perhaps this is the obligatory (and late) Thanksgiving post, but maybe there’s a reason it is obligatory—how can you not stop and reflect a little bit when you’ve just celebrated a holiday whose main purpose (besides setting up those Black Friday sales, apparently) is to express gratitude?

Let me start off this discussion by letting you know I am an exceptionally classy girl. I drink my champagne (teeny tiny amount, given the massive antibiotics) out of fine crystal. Sparkling crystal, with a satisfying weight and heft.

With a straw.

Yes, a straw. The straw that accompanied my drinking of water, juice, and other clear fluids and was only replaced by a demitasse spoon when I tried to eat my Thanksgiving chicken broth and pureed potatoes. Somehow, the nasty infections I’ve had the last month or so gravitated to my jaw, which is all swollen and inflamed. It’s been all broth, all the time in my world.

But I didn’t really mind. For one, it was still better than the festive Thanksgiving can of vanilla Ensure I had a few years ago when I was six days into an inpatient admission. For another, since I am both gluten-free and dairy-free and the best of the traditional family recipes depend on copious amounts of both gluten and dairy for their flavor, I have long since abandoned the notion of getting too excited for Thanksgiving dinner.

Which, I suppose, is my point here. It doesn’t matter what foods you can or can’t eat. For one meal, it doesn’t matter whose heart has stents, whose sugar needs to be tested, whose back hurts or whose lungs are congested. It doesn’t matter how many aches and pains are present, who is tired or run down, who is coming down with something or who isn’t yet over something else. It doesn’t matter how many body parts don’t work right.

The food is important, the traditions have meaning. But they only have meaning because of the people who have created them and maintained them, the people who gather around the same table every year, making toasts with heavy crystal and passing plates around. So even if you can’t eat the pie or the stuffing, even if you pass on the dessert because it has too much sugar, even if you need some help passing a big bowl of potatoes because your arms are too weak, you’re still part of something larger than any recipe or any one meal.

So for that something larger, and for all those parts that do work right, and for the gift of presence and participation—I am grateful.

Anatomy Lesson

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Various things I’ve learned recently:

That if someone cannot walk two steps on their toes or heels without trembling or falling, something is seriously wrong with their back. (Seriously.)

That if someone’s spine is crooked, fluid-filled, and riddled with bone spurs and if their disks have slid far enough in the wrong places, the pain can radiate not only down their legs and into their feet, but it can also inch up towards their head. (It’s equal opportunity!)

That when crawling seems like a reasonable option, probably that person’s quality of life could improve. (A modest request, really.)

That it is possible for the body to have learned to tolerate far too much pain for far too long. (And the rest of us are wimps, no matter what we’d like to believe.)

That even if someone takes the right medications, does the right exercises, and makes many accommodations, the body is a sneaky, shifty thing that does not bend to mere wishes. (And MRIs do not lie.)

That when doctors talk about removing parts of someone’s vertebrae and fusing other parts of the spine together, they intend to do so with pieces of that person’s own bone. (Because at first we thought it could be some random person’s bone, and that seemed sort of gross.)

That even though someone can look so small and vulnerable on the exam table and their shoulders might even quiver a bit, their eyes can still be fierce with a strength few people possess. (I mean fierce.)

That watching someone you love in excruciating pain makes you feel incredibly frustrated and completely helpless. (But then you compare your discomfort with their pain, and you realize it isn’t about you.)

Later as you stretch, or when you bend down to pick something up, or walk from the bus on your own two feet, and you don’t feel a tingle, not at ounce of searing pain you know exists for someone else, you cannot help but think, I am lucky.

It’s for the Kids…

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Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.

So what should medicine and society be doing to keep up with them?

I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.

So yes, I’m always on the lookout for innovative ways to make children’s lives better.

Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.

The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?

Here’s another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.

As quoted in the story, “We’re trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.

I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.

Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.

Triage (And, A Space to Breathe)

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Because recent sad events have reached their inevitable end, some respite from the emotional intensity:

“I keep remembering one of my Guru’s teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you’re fortunate. But that’s not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings… It’s easy to pray when you’re in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments.” (260)

(Pause here, and apply to your own life circumstances if you are so inclined.)

The preceding quote is taken from Elizabeth Gilbert’s Eat, Pray, Love. I’m sure you’ve heard of it—according to Oprah, every woman around is reading it. Of course that’s exactly why I approached it with a bit of skepticism—surely we’ve read enough tales of down-and-out Americans traveling to exotic places and uncovering the basic truths of life that set them free from their miseries?—but I really enjoyed the book. There’s a lot to be said for figuring out how to be a whole self before you try to be someone else’s.

Abigail Thomas’s A Three Dog Life, which recounts the life she built after her husband suffered traumatic brain injury, is easily one of the most luminous, compelling memoirs I’ve read. One of its reviewers said something along the lines of it’s impossible to select quotes for it because the entire book is quotable, and I agree with that assessment. Today, however, this particular passage really resonated with me:

I thought I had accepted Rich’s accident, even though I kept putting myself in a place where it hadn’t happened yet … I thought that not accepting meant turning my face to the wall, unable to function. So now today I look up the word acceptance and the definition is “to receive gladly” and that doesn’t sound right. I flip to the back, and look up its earliest root, “to grasp,” and discover this comes from the old English for “a thread used in weaving” and bingo, that’s it. You can’t keep pulling out the thread. You have to weave it in and then you have to go on weaving.” (121-122)

(Pause here, and apply to your own life circumstances if you are so inclined. Call someone you love. Tell them that.)

***
For a unit on professional writing, my students and I have been talking a lot about the concept of triaging and how it relates to health information: If you are asking readers for their time and attention, provide them with something that contains substance. Write with clarity and purpose. Prioritize your information, placing emphasis on the most important facts and streamlining the least essential.

The questions and assertions we’ve discussed are also applicable to blogging, at once a profoundly personal and widely proliferating public genre, and they are things I think about a lot: where to draw the line between being authentic (so important) and lingering in the mundane minutiae of daily life (so overdone); how to balance the privacy of others with the human need to tell a story; how to infuse humor and levity in writing without sacrificing seriousness or scholarship.

I don’t have the answers nailed down, and I know I am not always successful in my attempts to uphold these standards. But in the back of my mind remains the advice an editor once gave me, advice that applies to all kinds of writing and advice I turn to often:

If you do not have something insightful or universal for the reader to take away from your work, then try harder. You can be specific, you can be particular, but always strive to produce something greater than your singular story.

Is there anything more universal and at the same time more intensely personal than grief?