Category Archives: Family

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.

Giving Thanks

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

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

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

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

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

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

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

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

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

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

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

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

Bed Rest, Boundaries, and Balancing Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Right?

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

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

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

Who Would I Be Without Illness?

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

Who would you be without your illness?

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

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

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

Who would I be without illness?

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

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

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

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

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

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

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

And yet…

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

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

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

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

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

I would still be a stubborn pain in the neck.

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

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

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