Category Archives: Family

Burnout…(And Finding a Way Back)

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Now that things are settled down and more predictable after a long, hectic fall, I’ve struggled a bit to find my footing here. For so long, ideas and essays about living with chronic illness were natural and easy for me to develop: chronic illness and relationships; chronic illness and employment; chronic illness and pregnancy/infertility; and parenting with chronic illness, just to name a few.

More recently, the ideas aren’t so easy. Part of it is just plain old burnout, the inevitable physical and emotional fallout of the intensive process of researching, writing, revising, and promoting a book. If I don’t have a strong idea, I just don’t write. I can’t, so I wait until it feels right. It’s not an ideal way to keep up subscriber numbers and analytics, but it’s how I roll.

But it’s more than that, I think. I have a job, I have a writing career, I have a preschooler and a husband who deserve the best of me, I have family members with medical needs. The other spheres of my life take up so much of my head and my heart that there isn’t a lot of room left to talk about or think about chronic illness or to be a patient. This is partly possible because I am pretty stable right now and don’t have to deal with the major upheavals of my own hospitalizations and setbacks. It’s a lot harder to ignore chronic illness when its needs are immediate and non-negotiable.

Don’t get me wrong, illness is a part of my everyday life, from the crazy scheduling maneuvers to work in chest physiotherapy every day (or late at night, as it were) to running out of breath when I’m reading bedtime books to my daughter to the days when I just have no energy and wonder how I’ll last the long commute home. But papers still need to be graded, deadlines still need to be met, my daughter still has swim class, and the household still needs running. In many ways, I can’t afford to be slowed down by illness right now, and while I recognize such stability is borrowed time, I’m grateful for it when I have it.

Slowly, though, the ideas are starting to percolate again. I’m pitching ideas to editors. I’m posting here. I’m being more discerning about how much I say “yes” to and learning to say “no” more. Maybe they aren’t as personal and anecdotal about living with illness as they once were, but the ideas are there nonetheless. As a writer and as a patient, I’m just in a different place, but I’m starting to see that too is an inevitable thing, and I’m figuring out how to make these changing identities coalesce a little better.

Standing at the Edge of the Universe

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It’s been almost three months since I’ve written, an unintended break that’s been weighing on me.

In August, a pretty serious health crisis happened to my father (and only a few months out from a kidney transplant, it was particularly complicated), one we hadn’t seen coming at all.

“It’s like standing at the edge of the universe,” one of his surgeons said to the two of us, referring to what would happen if we didn’t proceed with the major (and risky) surgery. And that one phrase seems to encapsulate the experience of acute, serious illness so well.

Overnight, my siblings and our spouses were whisked out of our daily lives and into waiting rooms and consultation rooms. The waiting, that is the all too familiar part—we have a routine now. We bring iPads and laptops, share phone chargers and delegate “to call” lists for updates. One makes coffee runs, another is responsible for cracking the jokes, another serves as the contact person for the surgeon and the floor. I usually take the pre-op shift so I can lay eyes on him before he is wheeled back; once he’s in recovery, someone else stays on later.

Since my father provides a lot of care for my mother, we split our time between his ICU and step-down floors and doing overnights at her house, and then after she too had surgery, we traded visits between different hospitals, rehab centers and respite care facilities.

More than two months after it all started, both parents are now home together and settling in. Both are recovering well, and have a renewed sense of hope and possibility.

There is much to say about this experience: the amazing opportunities medical science and premium health care offer, the stress of illness on families, how fortunate I felt I had siblings to help dig through the trenches. But for now, all I will say is we’ve pulled back from our perch at the edge of the universe, from the tense, draining unknown.

Things are calmer now, more predictable. I’ve found a groove with my courses, our new schedule, and lots of other changes. I hope to back here more regularly, and back at my usual writing spots like WBUR’s Cognoscenti and Psychology Today.

Thanks for hanging in there through the silence.

One and Only; One and Everything? (Or, Parenting after Infertility)

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First there was Frank Bruni’s NYT essay on the gift of siblings, which was quoted, linked to and shared all over social media. It’s a lovely piece, and one that made me pause and really consider how much of my life experiences were and are shaped by having siblings, in my case, older brothers.

Bruno quotes writer Jeffrey Kluger, who observed that ““Siblings are the only relatives, and perhaps the only people you’ll ever know, who are with you through the entire arc of your life.” That shared history and familiarity can be a tremendous gift, and source of comfort.

Next came Lauren Sandler’s Op-Ed on being an only child and being the parent of an only child, a precursor to the release of her new book, One and Only: The Freedom of Having an Only Child, and the Joy of Being One. (It’s next up on my reading list.) In her article, Sandler takes on the misconceptions attributed to only children—that they are spoiled, selfish loners—as well as their parents, who must also be selfish, or care more about money or material goods than parents who have several children. She uses research to beat back these assumptions, and urges readers to consider the numbers:

“In hundreds of studies during the past decades exploring 16 character traits — including leadership, maturity, extroversion, social participation, popularity, generosity, cooperativeness, flexibility, emotional stability, contentment — only children scored just as well as children with siblings….only children are, in fact, no more self-involved than anyone else. It turns out brutal sibling rivalry isn’t necessary to beat the ego out of us; peers and classmates do the job.”

Lately, it seems like conversations about family dynamics and the decisions we make regarding family size are everywhere, and I find them cropping up all over the place in my own life, too. At two and half, my daughter is at the age where many of her classmates and friends now have younger siblings. All her cousins have siblings. Sweetly and innocently, she’s already asked me why she doesn’t have brothers or sisters. “Some families and bigger, and some are smaller,” I tell her. “What matters is that families love each other.”

When we’re in line at grocery stores, when I’m pushing her on the swings at the playground, or chatting with other moms, people ask me if she’s my first, if we’re going to have more. It’s a totally natural question, but if you’re parenting after infertility (and high-risk pregnancies) and/or parenting with chronic illness, it isn’t an easy or automatic question. It’s one I’ve been fielding since I was still pregnant with her. My response then was that I was focused on bringing this baby into the world safely, not future babies.

My response now echoes a similar sentiment. “We’re enjoying where we are right now.” After the long journey to get here, the fact that we have this happy, healthy little girl still blows our minds. Everyone responds to parenting after infertility in different ways. We never thought we’d be here, and some days it feels almost greedy or presumptuous or lacking in gratitude to assume lightning would strike twice like this. That might sound strange, but I wonder if some of you out there can relate.

What is a normal conversation for many other families, what is a natural progression in size for many families, is anything but for families with infertility or chronic illness (not that these are the only variables that make this complicated, of course—these are merely the ones that shape my perspective.) I wish this conversation was different for us, but that isn’t our reality. A few years ago, I wrote that the responsibility involved in making a decision like this—to embark on this high-risk road—was staggering. But really, the responsibility of being a parent in general is staggering, the competing considerations don’t get easier: We owe her the best of us, emotionally and physically. Siblings can be so enriching and wonderful. So are healthy (relatively speaking) parents.

It’s not an either-or situation, clearly, but what our responsibilities are to her as a toddler and young child and what she might want or need later are sometimes hard to navigate.

If she is an only child, I admit I sometimes worry about the misguided assumptions about only children as being spoiled or expecting the world to go their way, but I also know that her friends, relatives, and her experiences being in school, existing in groups, and generally learning to be social and empathetic. We’ve worked consciously to find a community, and communities within that larger community, where she will be supported and where she will feel connected to people beyond just the two of us. She calls her extended family and her gaggle of cousins “my people” and those bonds are incredibly important, and will be her shared history, too.

As I read Sandler’s essay and some related interviews with her, one thing that really struck me were all the negative labels attached to parents with only children—that their choices reflect selfishness or materialism, that they chose a small family so they wouldn’t have to deal with the chaos and inconveniences of more children, etc.

Maybe their choices reflect what is best for their individual family unit, and what allows everyone to thrive. Maybe it has always been their plan, their ideal social, economic, and philosophical situation. Maybe it isn’t their ideal choice, and the inability to have more children is a source of immense sadness. Whatever the reason, I don’t understand or appreciate the instinct to judge this choice, to assume negative motivations behind it, or to question the decisions parents make in terms of limiting their family size.

I know firsthand the many benefits of siblings. As a parent in a potential only-child family, I’m hopeful the benefits and opportunities of this path are enriching, too. I appreciate Sandler’s work and that she’s using research to speak back to these stereotypes—I wish she didn’t have to, though.

The Night Before Transplant…

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Some observations of fact:

Since 1988, there have been 116, 712 living donor kidney transplants.

Of that number, 4, 064 have taken place in Massachusetts, where we live.

Five hundred twenty-three living donor transplants have taken place at Beth Israel, where my father’s transplant will take place.

(Source: http://optn.transplant.hrsa.gov/latestData/step2.asp?)

A living donor kidney starts to produce urine in the recipient’s body before the surgery is over. (For some reason, this blows my mind.)

(Source: my father’s surgeon.)

Some observations of the heart:

No matter how many times you tell yourself all people who have this surgery are in poor health and are therefore high-risk, no matter how highly recommended the surgeons are, no matter how amazing the opportunities medicine allows for are, it is all still really scary.

Watching someone you love slip away before your eyes takes a piece of your soul. Watching that person have hope and begin to make plans for the future slowly restores it.

I can say without a hint of hyperbole or exaggeration that my father is indomitable, and has always been my hero.

Lucky for all of us, we now have another hero, whose compassion and sacrifice are giving us a second chance.

Please keep my father, his donor, our families, and both sets of medical teams in your thoughts and prayers tomorrow.

CaringBridge and National Family Caregivers Month

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Did you know November is National Family Caregivers Month? I didn’t, until CaringBridge reached out and let me know about their celebration of family caregivers. This awareness month comes during a time of year when we are particularly reflective and attuned to gratitude and the blessings of family, but if you’ve been following my blog lately, you know why the timing of this is particularly compelling for me:

We’re currently trying to find my father a match for a living donor kidney transplant. The ongoing coordination of this outreach requires a lot of time and energy, and more than that, the emotion of it is intense. This isn’t just a cause or a platform or some hypothetical advocacy—this is my father’s life.

None of us, especially my father, are new to caregiving. For example, just before my daughter was born my mother had a catastrophic health event that has forever changed her life and all our lives, and we’ve all juggled going to doctor appointments, picking up prescriptions, staying overnight, cleaning, cooking, doing errands, coordinating care, and managing the emotions that come with seeing people you love suffer and not being able to change it.

The National Family Caregivers Association writes, “Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.” It is a privilege, and a huge responsibility.

I write this from the perspective of both a caregiver (at times) as well as a patient, someone who has to rely on my husband and relatives when I am the one in a crisis, when I am in the hospital, or unable to leave the house. It is humbling to need to ask and rely on help, and it is challenging in many other ways to be the one providing care. Family caregivers, especially spouses, handle an incredible amount of stress on top of the everyday realities of work, household obligations, etc.

Typically, you don’t see sponsored posts* here. There are many reasons for that, (perhaps another post on its own?) but this time, the themes are so incredibly relevant and authentic to what I’m talking about on this blog, and the company, CaringBridge, is a nonprofit organization I truly admire and have utilized many times over the years, so it seemed like a natural fit. CaringBridge offers patients and families free websites to tell their stories, post updates, and communicate. It offers many ways for people to care for each other during any type of health event and is available 24/7, free to use, and accessible to anyone, anywhere.

Through CaringBridge sites I’ve followed little children fighting cancer, preemies in the NICU, and fellow health writers who just want a safe space to focus on the medical updates in their lives. There is room for photos, messages of support, and other personalized touches, including multiple privacy settings, that help connect patients and families in crisis. There is no advertising on CaringBridge; it is dedicated to families, not profits. That really resonates with me.

Coordination of care is always challenging, especially during acute health crises. After leaving an inpatient team meeting or getting important test results, it can be overwhelming to have to call and e-mail everyone to keep them posted, or keep track of all the details that need to be handled. Friends and family usually really want to help, but it’s sometimes hard to ask for specific, concrete things. In response to user requests to help centralize support, CaringBridge now offers CaringBridge SupportPlanner, an online calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.

I have been the patient in the ICU bed, struggling to keep friends and family in the loop, and I have been the relative huddled out in the corridor, trying to send texts, answer e-mails, and make sure someone has gone grocery shopping. I am glad services like CaringBridge sites and CaringBridge SupportPlanner exist—living with illness and caring for people with illness is hard enough. Some of the details should be easier to manage.

I am pleased CaringBridge is taking time to raise awareness for family caregivers, and acknowledge all they do on a daily basis to advocate for their loved ones, and I am grateful to have supportive caregivers, friends, and family in my own life. This month, take a moment to acknowledge those you know who are caregivers, and tell us a little about them here—they don’t do it for praise or notice, but a little encouragement can certainly go a long way.

(*And any questions about sponsored posts? Let me know! I very rarely post them, and will always be transparent. This content is sponsored by Caringßridge. Any opinions expressed in the post are my own und not those of CaringBridge.)

Home

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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

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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

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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

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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

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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.