Home

It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.

Have a great weekend!

Changing Spaces

It’s been an intense spring, one marked by necessary cuts. Some are exciting and liberating and others are more raw, but all are ultimately for the better.

Like many of you, I suspect, I often write and blog to process, to work through decisions and reflect on experiences that have already happened. A couple of months ago, when I wrote this post that started as a rumination on the writing and editing process, it really did begin with writing itself, and slowly stretched to ideas about living with illness. Still, it was primarily retrospective.

But I thought about the idea of “necessary cuts” constantly after I posted, and a couple days later, I had a life-altering epiphany. The writing informed the decision, not vice versa.

We should sell our house and move.

A few weeks after that moment of clarity, our house was thoroughly scrubbed, streamlined, and staged, and went on the market. We scoured neighborhoods in new places, comparing schools and commutes and spaces, and driving by listings. Just a couple of weeks later, our house was under agreement, and a few weeks after that, we signed an offer on a house in a much different place.

For the past four and a half years this has been a wonderful home. It’s got character and a good layout, and is in an active area with many urban amenities: public transit, coffee shops and restaurants and playgrounds in walking distance, proximity to highways and hospitals and so much else. Yet many of the things that were attractive to us then don’t necessarily reflect our reality now. Just as suddenly as we fell in love with this place (and it was immediate—we weren’t even looking for a new house), we knew it was time to move on.

For the first time since I was eighteen, I can see myself living somewhere where espresso, Thai food, and the subway are not within steps of my door. There are many reasons to leave that make sense to us, just as there were many reasons to live here when we bought it. But this house, as much as we love it, and the lifestyle this house represents, simply aren’t the right fit for us anymore.

It’s a necessary cut, indeed.

We held our breath a lot in this house, and did a lot of hedging. We were drawn in by the spacious, quirky bedrooms, eyeing the sunny front bedroom as a possible nursery someday, yet in the same breath we told the then-sellers to take their swing set with them because we knew there was a real chance we’d never have a child to push on those swings.

We are living in the after, not the “if,” and we have a lot more clarity in terms of what we want, but more than that, what we need.

Beyond concrete items like the walk-in closet or the updated kitchen, there are many things I will miss about this house. It was where neighbors became friends. It was where a business was launched over tamales and margaritas with friends, and where Supper Clubs were held well into the night. It was the home where an idea for a second book took root, and where, over several years, the stack of books and articles somehow became a cohesive narrative. It was where we hosted Thanksgivings and cook-outs and sleepovers with nieces. Its closeness to Longwood Medical Area meant it served as a home base and staging ground whenever my loved ones (or me) were in the hospital (which was far too often, really. Really.)

Our bedroom is where I closed the door and cried quietly month after month (after month), and my home office is where I got the call that finally brought happy tears after so many years. The sunny front bedroom is where we painted the walls a gorgeous pale blue/aqua color because we wanted our little girl to have something other than pink, and on whose walls we stenciled the words “Dream. Hope. Believe,” scarcely believing this was in fact our reality.

The sunshine that streams through the living room window every afternoon was my constant companion during weeks of bedrest, and the hustle and bustle of cars, trucks, and neighbors connected me to the world outside those four walls. The front door was covered in balloons and Welcome Home signs when we brought our baby home from the hospital, and the hardwood floors and living room rug are where she crawled and walked for the first time.

We’ve had so much joy here, and so much tough stuff along with that joy. Things fell apart and stitched themselves back together—not seamless, but stronger nonetheless.

In a few weeks, we’re off to someplace much different. More land, more green, more (mental and physical) space to exhale. I did not realize how much I was still holding my breath, until I wasn’t anymore. We’re sad to leave the house was truly a home, but we’re even more excited for a better fit, a better life for all of us.

Dream. Hope. Believe.

A Big Life

The last conversation we had with my grandmother began like this:

“It’s Easter! Have you eaten yet for the holiday?” We had to strain to hear her through the oxygen mask over her face, but she was not deterred by that, or by the extreme stress her heart and lungs were under.

If you knew my Nana, you would not be surprised this was the first thing she said when she opened her eyes and saw us gathered around her hospital bed. The consummate Italian cook and family matriarch, she considered feeding her family the ultimate act of love, of physical and emotional nourishment.

To say her death at 92 was truly a shock is a testament to the indomitable force of nature she was, a feisty, active, sharp, loving, funny, tenacious, and hardworking woman until the very end. If you knew my Nana, you knew how relentless she could be in pursuit of what she believed, how dogged she could be in her role as devoted wife, mother, grandmother, or great-grandmother. Your shoulders would shake with laughter and your eyes would tear a bit as you recounted her latest wild escapade, or heard the most recent “Nana-ism.”

A force of nature, indeed.

Those of us who know her have all these stories, we catalog them and re-tell them and they are our buffer from the reality of grief, our collective place to land. As one writer likened it, they are our pockets full of gold.

So while I keep them preserved among those who know them and know her best, here’s what I know.

I know she lived, as my husband said, a big life—one filled with sacrifice and sorrow, unquestionably, but one filled with so many relationships, so much love and grace.

I know from every handwritten note or pot of tomato sauce, from every Rosary she prayed for us, or wacky Christmas gift we received, that we were loved. I also know she knew how much she was loved by her family.

We ended every phone call with “I love you.” Two days before she died, I got to hear my daughter say “I love you, Nana” and got to see my Nana’s reaction to it. I know that makes me incredibly fortunate.

The last interaction we had while she was awake was when I held her hand and then kissed it. No words were exchanged in that moment, but she felt it, and it said everything we needed it to.

I know I miss her already.

I know that when I shake my head, smiling, and use the word “relentless” in relation to my daughter’s quest for whatever object or task she is focused on, that I am seeing shades of my grandmother in her.

I know that what I want for our daughter is a big life, too.

On Gratitude

Two years ago, I wrote about being grateful for the knowledge that comes with a celiac diagnosis, and more than that, for the simple gift of being present at Thanksgiving, instead of being in the hospital.

Last year, I wrote about being grateful for the amazing blessing of my newborn baby girl, and for all the dedicated health care professionals, advanced technology, and support that allowed both of us to make it. I also wrote about how complicated an emotion gratitude can be when to comes to serious illness.

Here we are, twelve months later.

Motherhood. In the best way possible, it throws all the pieces of you up in the air and when they settle back down to the ground, they are forever rearranged. Family illness, work, writing a Book, (and yes, that’s a capital “B” in my head)—in ways less luminous and more wearying, they also throw up the pieces of me, the pieces that make up us, and reconfigure them all.

And here I am, a year since my last gratitude post, a year removed from the immediacy of birth and the physicality of newborn-hood. A year removed from the decision to re-structure the whole book, and now some 85,000 words in a new direction. A year and six classes and multiple committees removed from the end of maternity leave. A year of negotiations and boundaries and compromises that accompany being a mother and a daughter, a patient and a caregiver.

Amid so many changes, I am at extremes (as usual).

I find myself grateful for the smaller details, noticing them in more vivid technicolor than the pale backdrop of daily life: a chuckle over the monitor; an unsolicited hug. An unexpectedly light commute that means I am home earlier to play; unseasonably warm weather that means one more day at the playground. Putting on my headphones and squeezing in some revision hours; finishing the very last paper of a deluge. Making time to try a new recipe; eating dinner in the dining room together because that makes a Wednesday night something better than. The magic of a Thursday night, when the meat of the week is behind me. Coffee with a friend. A clean house.

And the much bigger stuff: To witness my husband take a risk and follow his dream, so that when he tells our daughter to do that some day, it will not ring hollow. To able to work on a book that explores questions I didn’t know the answers to, because really what more can a nonfiction writer ask for?

And the biggest thing of all, the thing that is immeasurable, the thing that still makes me catch my breath in the grocery store aisle and smile to myself when I think of a certain smile: grateful to be somebody’s mother, grateful to be her mother.

On Anniversaries; or, What is Necessary

Last spring and summer, before things got more complicated, every time I walked by the baby’s room I would stop and enter. I’d walk in and touch something—the side of the crib, a stack of bibs that had been washed and folded, the small pink bunny we bought at the hospital gift shop the day we found out she was a girl. The room gets a ton of sunlight all afternoon, and that’s always how it seemed to me—quiet, peaceful, and full of streaming light.

While an amazing, incredible journey, pregnancy wasn’t always comfortable for me, and I am not talking about all the physical stuff of a high-risk pregnancy. I was awkward in maternity clothing stores, awkward about letting people know I was pregnant (if waiting 16 weeks to tell people beyond the inner sanctum is any indication), awkward even saying the words “I am pregnant.”

It wasn’t because I was waiting for something bad to happen, for that other shoe to drop, or anything like that. It was more that it was hard to believe it was really happening, and if I said it out loud, if it became so very real, I would wake up from the dream. So it was a learning curve, letting go of this safely guarded secret, meshing the real world and all the risks and variables with the dream world.

But her room was different. I know many people, those who have been through infertility and loss and those who haven’t, who wait on decorating and setting up just in case, and I totally get it. I was convinced I’d be that person, too. Instead, there was something comforting about getting it ready early, about the trappings of a baby having a place in our home. (Plus, I had a feeling the third trimester would be…challenging, so I wanted to be prepared).

Her room was my compass, my private act of rebellion and hope. Every time I went in there I smiled, every time I rocked in her glider I felt peace. I needed it to remind me everything would be okay, and to remind me it was not just okay to have hope, it was intrinsic to this whole experience.

Now, I walk into her room and there is a peaceful, sleeping baby or a smiling, wriggling baby read to play. The sunlight streams in just like it did last year and I catch my breath as the two worlds collide, the world of waiting and the world of living, and I exhale.

All of this is on my mind a lot as we near the anniversary of the call that changed so much. Of course I know from firsthand experience that such calls do not just happen at 3am; they happen as you are making dinner quite often, they happen as you’re doing errands, they happen as you are about to have lunch, like this one did. We’ve had lots of calls, but this one I remember in visceral detail.

It was this time last year I learned that it is possible to have your heart literally feel like it will stop beating from fear at the same time it wants to explode into a million pieces with happiness. That grief and sadness and joy and gratitude can co-exist—not easily or gracefully, but they can, and we need them to. Becoming a mother will be forever linked with being my mother’s daughter, and there is a lot to be said for that.

Sometimes, it is hard to believe how much has happened in one year, how much life has changed from last summer to this. It is not just good to be hopeful, but it is a necessary part of being.

Giving Thanks

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

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?

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...

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

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...?

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)

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

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...

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)

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?

Behind Blue Eyes

One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.

On Fathers and Memories...

We went for a walk around my neighborhood and got lost.

I was three, and that's what I remember as my earliest and most vivid memory of my paternal grandfather. Someone found us eventually, of course, and I was too young to really piece together that it was odd that a grown-up who’d visited my house for years would get both of us lost on a simple Sunday afternoon stroll. He was in his late fifties.

I was about five when the phone calls from my grandmother started coming with increased urgency: My grandfather had wandered out the front door again. He stepped onto a bus and wound up in the next city. A neighbor found him disoriented, standing near the corner shop. Sometimes, the searches went into the night, and she’d return in the dark, hugging and kissing him, fighting back tears. If she turned her back for a second—to take a quick shower, to cook dinner, to answer the phone—he could slip away.

He was a proud Marine who spent four years fighting in the Pacific during WWII; when he was lucid, he was just as proud and determined as he’d always been.

Soon after, I heard the word “Alzheimer’s” peppered in my parents’ conversations more and more. I didn’t know what it meant, but I knew each time I saw my grandfather, he talked less and less. Smiled less and less. Interacted less and less. I wasn’t scared of him exactly, but I was confused. I didn’t know how to reach him anymore.

No one did.

When his needs became too great and the amount of care he needed was more than any one human--however loving and devoted--could provide, he went into a nursing home. He was fairly young at the time, not much older than my own father is now, and his life was slowing reversing itself. He sat motionless in bed and our regular visits bore witness to each new loss: he no longer spoke. He no longer had the spark of recognition in his eyes he used to have even when words failed him. He no longer had the ability to control his bowels, or eventually, to feed himself.

My grandmother took the bus to visit him every day. My father took us often; what I remember most are his tears as he stroked the forehead of the man who no longer recognized his oldest son.

My grandfather died when I was a freshman in high school. He was buried on my fifteenth birthday, the same morning the bomb exploded in Oklahoma City. He was buried in Marine tradition; dress blues and taps and a gun salute accompanied his casket.

He died in 1995, but we lost him long before that. My father had grieved each loss for so many years that he said he’d already said goodbye to his father a hundred times over. I cried during the funeral, but I wasn’t crying for the man I would miss—Alzheimer’s had taken away any real relationship I could have had. I cried for all the things he’d missed and would cotinue to miss, the memories robbed: the high school graduations, the college ceremonies, the weddings and baptisms. Education was the most important thing to him—he stood over my father’s shoulder each night, making sure he didn’t take his Boston Latin school education for granted—and with each academic milestone we passed, my father would well up and say, “Your grandfather would have been so proud. He lived for this.”

Last week, Newsweek highlighted the challenges of caring for Alzheimer’s patients and predicted how huge an issue the disease would become in the next several decades. It brought back a flood of memories for me and an appreciation of what my grandmother and her children went through caring for my grandfather I couldn’t have had as a child or even a teenager.

I am so used to the physical aspects of giving and receiving care for chronic conditions—getting ice for someone, doing errands, asking for help carrying things. I have seen the way the body can be ravaged by disease and because I am used to it, I do not fear it too much.

But I cannot think of anything more terrifying than losing your memories, of words and names and faces slipping away day by day, of spiraling into a black hole of confusion so profound that by the time the body’s functions begin to systematically break apart, the mind isn’t even aware. Towards the end, the pain is even greater for the living, I think, for people like my grandmother who can only hold a cold, clenched hand in their own and remember what it was like to feel love from their own beloved.

For Father’s Day, my husband and I scanned three hundred pictures and created a DVD of them for my father. It meant so much to him, but we all benefited. I watched the photos from the early years flash across the screen—my grandfather holding me above a birthday cake, my grandfather in the middle of all of us cousins on Christmas, my grandparents with their arms around each other, smiling. You could see his gaze grow more vacant through the years, but he was there.

“Pictures are such great sources of memories because you never take them when you are angry or sad, they are usually so happy,” my mother said. She was right, but I loved these pictures the most because through them, I saw that he did know me once. He did hug me and hold me and say my name. We did have a relationship, if briefly.

And for however sick my father is, I am unspeakably grateful that at the same age his own father started growing blank and withdrawn, his mind is strong, clear, and sharp. He will continue to make memories—and keep them.

Stranger than Fiction

Given my journalism background and current state of intense nonfiction book writing, I sometimes forget I applied and entered my MFA program as a fiction writer. I haven’t had much chance to indulge in novels lately—whenever I am not writing my book I am researching material for it—and miss the crafty details, the intricate plot lines, and imaginative twists and turns.

Life, however, never fails to give me fodder.

The truth is often stranger than fiction, and all I can say is that I couldn’t make this stuff up, and if I did, no one would take me seriously.

Last week, my grandmother had a series of strokes. This alone is a decidedly serious, difficult, and emotionally draining situation and worthy of its own post (forthcoming). But things are never that singularly difficult in my family. Thankfully, my (severely arthritic and debilitated) mother and my (walking disaster of medical conditions and recent cardiac surgery patient) father were on Cape Cod with her when it happened and could take her to the hospital.

Clearly this was a stressful time, especially for my grandmother and my parents. They spent hours in the ER, waited for multiple tests, and got the grim, scary news that she has a large brain aneurysm. Thus the whole rehab-nursing home machine began churning.

Enter the ridiculousness. The week before, my father got a sunburn on the top of his foot. By the time he was at the ER with my grandmother, he could barely stand on it. Whether it’s because he’s been an insulin-dependent diabetic for twenty years and doesn’t heal fast or because he’s predisposed to infections as a result of his immunosuppressive meds and chemo or just terrible luck, the sunburn turned into a staph infection and cellulitis.

After IV treatment, my mother brought him to their vacation house to rest and quickly returned to the hospital to be with my grandmother. They had to leave his car at the hospital and my mother, whose shoulders aren’t up to lots of driving, did all of the ferrying back and forth.

And then their land line shorted and they had no dial tone. My father had dropped his cell phone in the ocean the weekend before so he didn't have one. My mother had forgotten her charger and her cell phone was dead. Because the phone line was faulty, the security system went haywire and kept beeping.

And then my father realized he couldn’t rely on his his crutches because his arm muscles were too weak from his polymyositis. This meant he couldn’t get up to use the restroom or get any food, and my mother couldn't help him when she was home because her back was too unstable. I should add there wasn’t any food in the house anyway since my parents hadn’t expected to stay through the weekend.

Just to recap: a temporarily immobile diabetic with a potentially life-threatening infection was alone in a house with no viable way to communicate with the outside world and no access to food should he become low.

Did I mention the heavy rains caused the basement to flood?

“Can you come down and get your father lunch?” my mother asked in her harried state, really asking for so much more.

So I packed up my clothes, medicines, The Vest, and the dog and took off for the two-hour drive. For the next couple of days, I shuttled between my grandmother’s room in the stroke wing and the outpatient clinic where my father had to return each day…all of which wouldn’t be all that ridiculous except for the fact that the humid weather made my congestion a lot worse so pushing my father’s wheelchair while juggling my bag, my laptop, and his briefcase was a scene of its own.

The only things that saved us all was the fact that we never lost our electricity during the thunderstorms—my dad could watch TV since he couldn’t do anything else, I could plug in my Vest and hope it worked since I forgot to pack my nebulizer, and when my mother returned home from her long days, she could use her heating pad…and the fact that after a lifetime of illness, we weren’t derailed by it all.

“That’s just the way you guys roll,” my physical therapist said when I summed up my tale.

We both laughed. It sure is.

Timing (Sweet) Timing

Can I just say that my timing has always been….ironic? No less than three hours after I posted my last entry on worrying about my father's health and the general nuttiness that consumes my mind, my phone rang.

“Your father’s [thallium stress] test went badly. The artery they stented in August is 100% blocked again and he’s being admitted,” my mother said.

Cue pit falling in stomach and tears welling in eyes. Not again.

Thus began several days of waiting, waiting to see if he would need a triple bypass surgery or if they could re-stent his major artery and leave the other four blockages alone for now. Either way, he’d need the dreaded dye for the catheterization, and his one little kidney still hadn’t recovered from August’s trauma.

Are you freakin’ kidding me? First of all, the man had done everything right: his cholesterol was the lowest it had ever been, he exercised regularly, faithfully took all his meds and statins, even dropped down to a four-day work week since the August scare. All that, and we were told that 95% of the time, stents lasted a lifetime. Of course the man with one kidney and a billion other medical problems was in the 5% of patients whose stents failed within months.

Secondly, what are the chances that the very day I write a post that talks about his health and my tendency to be a little overbearing and obsessive about it he gets this news?

In high school, after eight months of rehab from ankle surgery I made the JV basketball team (and yes, there were in fact cuts!). The day before my first game, I caught the ball awkwardly and because my bones are like twigs, I broke my hand. End of season. In grad school, shortly after I finally recovered from the one-two punch of whooping cough and viral pneumonia, my adrenal system failed. All this happened just as I was settling into the weekend job I adored at the Devon Nicole House at Children’s Hospital—and these are just the first instances to pop into my head.

My father’s timing is even more ridiculous. I could write pages about it, so I’ll just focus on recent events. In August, he got chest pains just after the ferry departed from Hyannis to Martha’s Vineyard, making for a long, harrowing ride. Last week, he felt short of breath and tired again, just as he was about to get on a plane and fly to DC and then Florida for conferences he’d looked forward to all year, events he was leading and presentations he’d labored over. Instead of going to the airport, he went to his doctor.

But there is a first time for everything, and my father’s catheterization Tuesday went better than best case scenario. I can’t even believe I just wrote that in conjunction with him. Better. Than. Best. Case. Scenario. They didn’t need to do the triple bypass, and they used so little dye during the cath itself they could re-stent it then and there, something no one thought they’d be able to do.

Feels too good to be true, but as each day goes by, we’re believing it more and more and we’re inspired by it.

During the long days in the hospital this week, I thought a lot about what I’d write here. I kept coming back to my last post and how my worries and actual events collided like that. It was tempting to bemoan our collective timing yet again, but something stopped me. My father was alive, and a lot of steps went into that process.

He was a ticking time bomb for months, walking around with a major artery 100% blocked and not realizing his stent failed. He was about to fly all over the country. What if he’d had another heart attack and this time it was on the plane? Or in a hospital far away where no one understood his beyond complex medical history? What if he hadn’t called his doctor exactly when he did and hadn’t been able to squeeze in the stress test?

His timing was pitch-perfect.

The more I think about all the near-misses, the plans gone awry and the events missed at the last second, I realize just how much timing impacts my life, our lives. Illness is never convenient and disappointments are frequent, but we’ve made it this far. I wouldn’t change our timing by one second.

Who Me, Worry?

“If I stopped and worried about everything that’s wrong with me, all the possible complications and outcomes, I’d never make it through the day. So I don’t. For better or worse, I just push through it,” my father said recently.

For the record, the man is a walking catastrophe: he’s diabetic, he’s lost a kidney to cancer, he’s had a heart attack and stents implanted. Oh, and he has a really rare connective tissue disease (polymyositis). So it really would take him all day to dwell on what ails him if he were so inclined.

“I know you know what I mean, Laurie,” he said.

Of course I knew what he meant, because I follow the same rules. This is not to say I don’t think about my health in the same way he has to on a daily basis, but thinking and worrying are two very different things.

He thinks about what he eats and thinks about his insulin. He thinks about how much exercise he needs to fit in and thinks about when to take his medication, but these types of thoughts are more rote procedure than anything particularly emotional or intellectual. I think about what time my chest PT is when I’m making plans, I think about taking certain meds on an empty stomach and others after I’ve eaten, and I think about what I’m buying at the grocery store in case I can’t find a parking spot and have to carry the bags too far. Nowhere in these deliberations does worry play a role.

Now, I’ve already admitted that I am somewhat of a control freak, something that bears mention in this conversation. I fully admit to being obsessive about certain parts of my life: making the bed, de-cluttering the coffee table, listening to certain music when I am writing, doing exercises at the gym in a particular order, etc. (Are you scared yet?)

I don’t obsess or worry about my health like that, though. Sure, I have moments where I’m genuinely scared or I wonder what it will be like 10, 20, or 30 years from now. Who doesn’t? But day to day, I don’t worry. I just do what I need to do and live my life, accommodating illness when I have to and defying it whenever possible.

But here’s the kicker: I worry about my father’s health. A lot. More than we each worry about our own combined. I inquire about his liver function often since the chemotherapy he takes is hard on the liver. I always ask for his latest cholesterol readings. I feel like there are so many moving parts involved in keeping him healthy (ish) and alive and I fear someone will drop one of them. I stress over his kidney function results, and spiral into a chain of what-if’s: Diabetes stresses the kidneys. He’s had it for over twenty years and he only has one kidney to begin with. The dye he needs for his heart catheterizations, angioplasties, and stents also stresses the kidneys, and he’s needed two rounds of the dye lately. What if he needs a transplant? Would he even be eligible, given his other serious conditions? Would his body be able to stand it if we found him a kidney?

“You can have one of my kidneys. If I’m a match, it’s yours. In a heartbeat,” I’ve told several times. Usually these offers of organs have no sequitor, and I get a lot of strange looks.

He always tells me not to worry so much, assures me that he is okay. But every now and then, he admits to the reality of his situation, and that actually reassures me. There is such a fine line between pushing along and getting through each day and plain old denial, and while I completely relate to his desire to just move forward and not focus on what’s wrong, I also think it’s important to acknowledge the long-term consequences…not enough to be dominated by them, but just enough to take them into consideration in the present, like when he's trying to balance his blood sugars or trying to squeeze in exercise.

In the end, I think this goes back to my need for control. I take my meds, I follow my regimen, and though in the end I can’t always control what my body does, I feel better knowing at least I have all the moving parts accounted for. With my father, control of his health is one more step removed from me, and because I care about him so much, I want to be the one to keep it all together.

I’ve promised him I won’t worry quite so much, but I’m not sure he really believes this will happen. After all, as my father, he faces the same challenge in terms of worrying about me no matter how much I assure him I am fine…so I guess we both need to follow each other’s advice.