CaringBridge and National Family Caregivers Month

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.)

Invisible Illness Week

This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It’s great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

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.

Food Allergy Love Stories…and a Giveaway!

So, remember when I talked about striving for balance just a few short weeks ago?


Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.

What’s Guilt Got To Do With It?


How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

The Rest of the Story: Children and Chronic Illness

In some ways, I’ve been drafting and revising this post in my head and heart for almost four years.

I first touched on chronic illness and infertility in August of 2006, with this post on numbers, statistics, and hope. Since then, we’ve talked about can versus should, the tough decisions potential parents with chronic illness face, and other universal aspects of having a family. But the behind-the-scenes story? That was never fodder for this blog.

It’s been 44 months since we first started trying to have a family. That’s three years, eight months. Not as long as some, I know, but too long. About eighty percent of our marriage, in fact. Forty-four months later, I see this long journey as characterized by moments of awareness, a series of changes in thoughts and assumptions that challenged our perspectives.

There were moments of realization:

Along the way, I fell completely in love with other people’s children, and realized emotionally what I knew intellectually: unconditional love does not adhere to boundaries of biology or relationship. Parenthood does not depend on pregnancy, something I knew but didn’t really know until I knew. With that, we both realized that no matter which path we took to build our family, we would do the right thing for us and it would be our first choice, not a fallback plan.

I’ve realized no matter how hard we try and how much they really do care, there are people who will not understand, who cannot give us what we need or speak the words we are desperate to hear. I’ve realized that this is okay. I’ve learned to let go.

Similarly, no matter how many consults and additional opinions we’ve sought, no matter how meticulous and deliberate we have been about our decisions, there will be people who judge. And while hard, that too is okay. I’ve realized that doing right by each other and our potential child is all that matters—with that realization comes some freedom.

There were moments of isolation:

Not surprisingly, my ongoing fascination with language spills over into this journey. If you take the adoption route you become fluent in terms like open adoption, or the semantics of birth parents, first parents, adoptive parents, etc. If you look into surrogacy, you’re flooded with euphemisms: at our hospital, the preferred term is “gestational carrier,” and the recommended agencies have all sorts of feel-good names. If you pursue assisted reproduction you start speaking in code: IUI, IVF, 8dp3dt, BFN, BFP, PIO.

But either way, you no longer speak the same language as most of the people around you. You speak the language of “if,” when so many others take for granted the “when.” And some days, surrounded by the “when’s,” the easy talk of when pregnancy will happen and the carefree assumptions about when siblings will arrive, is a lonely place to be.

In another twist of language, I learned that putting the words “very early” in front of “miscarriage” does not mean it is not sad. I wondered if anyone could see the shadows of that loss when I wrote about disappointment. Private sadness is indeed isolating, however necessary it is.

Of course, there were darker moments:

I remember one particular day last spring. It was the first bright, sunny day that thawed winter’s slush, and after a terrible doctor’s appointment it was the first day we truly felt, however fleeting, there was little hope. What good were all these options people kept talking about, I kept talking about, if none of them seemed attainable?

“You know the hardest part of all this? Waking up and going through the day and acting normal when it feels like the world is crashing down,” I said to my husband. For many weeks, when I woke up and realized the situation had not changed, I felt I was in a living nightmare. I hated people to hear or see me cry, so I simply didn’t talk to many people.

Another sunny spring day we all waited in a hospital waiting room, anxious for the arrival of a much-loved baby. I kept jumping up to take cell phone calls in the hallway, re-scheduling consults and high-risk assessments. I was angry, not because I was being told I might never carry children while hanging out in the maternity ward, but because even on this happy day when I wanted to be fully present in the joy, infertility was literally stalking me. It had already taken so much.

We made a cocoon for ourselves so we could filter out the white noise and weigh what we wanted versus what is most fair to a child. Anytime you bring the “can versus should” element into a conversation about children, the responsibility inherent in that is staggering. We take that responsibility more seriously than anything else in our lives.

In these moments, I, we, have learned sadness and grief, frustration and disappointment. But we’ve learned much more. As hard as it was to hide what weighed us down, it is even harder to hide good news, joyful news, especially when it has been such a long time coming and has exacted such a toll.

And so I am pleased to share what is truly a moment of joy: This fall, we are expecting a baby.

It still feels strange to type those words. Despite the many ultrasounds, the many doctor appointments, the talk of showers and strollers, sometimes it is hard to believe this is happening, this thing that happens for other people.

I am incredibly grateful and excited. When I first found out I cried so hard my poor husband thought I had yet more disappointing news for him and instantly went into consolation mode. I simply did not have the words to explain happy tears.

We have pictures proudly displayed on our fridge and multiple teams of doctors monitoring every breath, doctors who never forgot to say “congratulations” amidst all the precautions and variables. What a beautiful word.

We kept this news to ourselves for a long time. It’s high-risk. I’ve already been hospitalized. We’ve lived through loss. I have jobs and policies and details I needed in place. We are fiercely protective of this little one. But at 16 weeks I am getting comfortable telling people, and I love sharing news that is actually good.

And through this all, there were (and still are) moments of relativity:

Infertility was merely the starting point. Infertility with a guaranteed high-risk pregnancy and chronic illness? It’s a tough combination to contemplate, but everything is relative. We have to focus on the tough road ahead of us, and I know we can do it.

Baby showers and pregnancy announcements never bothered me, and seeing babies always brought me joy instead of reminding me what I did not have. I pretended I was immune to a lot of the emotional fallout from infertility, that I was focused solely on risk analysis and decision-trees. Not true.

Now that I am pregnant, I feel the aftershocks of infertility. I see the many bits and pieces it chipped away, and the bits and pieces the high-risk nature threatens. The first time I checked out the maternity section of a clothing store, I couldn’t relax. I was in a cold sweat; I felt like a trespasser. Now that I’m closer to needing new clothes, it’s getting a little more real, a little easier.

After 44 months of this, my gut response to the topic of so-called “push presents” is, isn’t the baby the gift? My mother asked me recently if I had a preference for a boy or girl. “Alive,” I told her. All I want is a baby as close to full term as possible and for both of us to come home from the hospital and be okay. That is the gift. That is everything.

Lastly, there have been moments of growth:

We often sit at night in my husband’s office, soon to be the nursery. He uses the desktop computer, and I sit on the bed with my laptop. We talk about paint colors, and even well into the first trimester I would stop, mid-conversation.

“Are we allowed to talk like this, to plan a nursery?” I ask.

“You are pregnant. We are having a baby. It is okay,” he reassures me.

So I exhale and smile and think about meeting this little person whose waving arms and bent legs on the screen make my husband smile from his eyes and put all the oxygen I need back in the room as if by magic. And I allow myself.

And when I get overwhelmed by the realities of this high-risk pregnancy, when I worry that everything I am doing to keep us both healthy will not be enough, I think of this baby squirming around, a baby who is thriving. This is the only type of pregnancy I will ever know, and I embrace it fully. I allow myself.

I am proud of us, proud that we came through this journey intact, a better team than we started. We always told ourselves that somehow we would be parents. Only a few months into dating, we knew this was what we wanted for each other and with each other. We had no way of knowing just how long a journey this would be or how it would end, but we wouldn’t change any of it.

So I am working on a new lexicon, one centered on “when.” We talk about the baby’s library or imagine walking him or her to school up the street and talk about the kind of parents we want to be, and it is no longer strictly hypothetical. We imagine new moments, new possibilities, and we are buoyed by the one word that started this whole conversation 44 months ago, the one word that is important than ever: hope.

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.

Why I Participate in Medical Research

Um, it’s March.

How did that happen? In a blink, the late classes that used to start when it was dark now only end in the shadows of dusk, and tiny shoots of early spring flowers are poking through slushy dirt.

It’s been awhile. Actually, it’s been the longest stretch of time in between posts I think I’ve ever had. Usually, silence equals bad news in my world, but thankfully my absence is not the result of acute illness and fragmentation like it was when I made my confessions here last March.

Instead, it’s just a lot of medium-sized things piling up, leaving me standing in a pile of excuses and hating hearing the words coming out of my mouth.

You see, I meant to write a post this weekend in honor of Rare Disease Day, a cause that means so much to me. But I was out of town and then I got glutened, which totally threw me off my game. It’s a few days late, but my meek attempt at fulfilling an obligation I feel strongly about is to instead point you to my Rare Disease Day post from last year, since all the points still ring true.

(How ironic is it that on the heels of my last post on restaurants doing more to accommodate food allergies I went and got glutened for the first time in quite awhile? And this was after speaking with both an employee and a manager and being assured beyond all doubt the marinade on the chicken did not have wheat. Super. I know it wasn’t the lettuce underneath the chicken that made me wretchedly ill…)

And I meant to write and submit a post for this edition of Patients For a Moment that answered the questions: What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

But I didn’t, because each night that week I came home with the best of intentions but by the time I battled traffic and had chest PT it was already 8pm and I hadn’t started dinner and my work inbox needed me and man, my brain was tired. And as much as I wanted to elegantly dissect the ramifications of being a lifelong patient and never knowing what it was like to live without illness as my near-constant companion, I couldn’t get the words from my brain to the screen.

See? Excuses. Valid and truthful, yes, but in the end, meaningless.

But there’s something else I’ve been doing the past few weeks (months, really) that I don’t need to make excuses for, something that relates to the Rare Disease Day and to our identities as patients.

I’ve been participating in research studies. From broad public health studies launched in the ER to short, three-week surveys to long-term trials with blood work and follow-ups, I’ve jumped in whenever I’ve been approached by a research assistant. Sometimes, the studies have little value to my personal situation but are part of worthwhile projects in communicable diseases or prevention. Other times, the studies are directly related to what I live with and am going through.

I am not exaggerating when I say I wouldn’t be alive and certainly wouldn’t have the quality of life I do have were it not for medical research, for the thousands of participants or “subjects” who have volunteered for studies before me and for the researchers and scientists who launch these investigations.

From my point of view, any time I can participate in a research study it’s a tiny way of giving back, and of hopefully contributing to something that will positively impact other patients down the road.

For rare disease patients, the need for research is especially critical. So it may be a few days late and it may not be an official Rare Disease Day post, but consider this my public service announcement for the week.

And at least this is something I don’t have a lame excuse for these days!

Give and Take

Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.

In the spirit of Valentine’s Day and all things related to love, she posed the following question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.

Certainly, they are a part of my life. I’m not trying to pretend otherwise.

For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.

But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.

I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.

I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.

I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.

I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”

And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.

So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.

I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.


Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.