Navigating Work-Life Balance by Asking for What You Need (Part 2)

In this final installment of a week-long series on chronic illness and employment, we pick up where we left off: frustrated by her circumstances and her chronic conditions, Leah Roman had a huge choice to make. Just how much was she willing to sacrifice her health? If she asked for what she truly needed, what would that look like? Follow the rest of her story, in her own words. We’d love to hear your thoughts on her big decision.

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From August to October 2012, I dealt with a particularly bad flare-up.  As it had in the past, my flare incited my chronic hip bursitis.  The bursitis made it almost impossible to get up and down the stairs- a feat required of the two-train commute into my Philadelphia office.  There are 48 stairs just to reach the train platform in my suburban town.  After trying various strategies to accommodate the commute (e.g., traveling with my husband so he could carry all my stuff; using the SEPTA elevators-which are often hard to find and/or out of service), I always seemed to get the same result:

I always collapsed on the couch exhausted at 6:30pm.  I was too tired to make dinner.  I was too tired to exercise.  I was too tired to make social plans.  I avoided plans on weeknights because I was too exhausted from that day’s work.  I avoided plans on weekends because I needed that time to recover from one exhausting week before another exhausting week started on Monday.

After much soul searching, I decided to take the advice of a mentor who helped me adjust to a life with chronic illness.  She said, “Ask for what you need”.  So I did.

I needed a flexible schedule.  I needed a commute that was physically do-able, even on the worst day.  I needed to reduce my stress level.  I needed to feel more independent and get through my day without so much help.  I needed to get over my fear of working from home.

My biggest fear was that working from home would be isolating. Having a chronic illness is isolating enough and I often thought that going into the office (even with its challenges) got me moving and socializing when my instinct may have been to hide at home under the covers. I was also lucky enough to have my best friend in Philly work just across the aisle in our workspace. I got through many difficult days because we made time to have lunch together and she has consistently been one of my biggest cheerleaders. I was worried about the isolation of working at home without our lunch dates.

Even with these fears and uncertainty, I left my full-time position and started my own public health consulting business in January 2013.  I immediately felt relaxed.  With chronic illness, so much is out of our control. Now I could decide when to work and how much to work. I particularly enjoy the opportunity to control the message about my health and my recent work change.  No- I am not “too sick” to work.  Instead, I made a conscious decision to design an employment situation for myself that was balanced, enjoyable, profitable, and sustainable- flare or no flare.

Prior to January, I would drag myself out of bed at 6:30am- often with a poor night’s sleep due to one nagging pain or another.  My husband and I joked that he duct taped me together (i.e., collected my work bag, packed my lunch, found my keys) and shoved me out the door in time to catch the train.  By the time I arrived at my desk, I was exhausted!

In contrast, I am now well rested.  I sleep until I naturally wake up.  My morning starts very calmly with breakfast and conversation with my husband.  I’ve noticed that this calm morning carries into the workday.  I no longer feel pressured to work early “regular hours” like everyone else.  I work when my body is naturally energized (usually 10:00am-6:30pm).

I also use my flexible schedule to integrate exercise or errands into the day when I have more energy.  I initially worried that work from home would be too sedentary.  After all, I was used to a city commute.  So I wear a pedometer every day.  If I have not walked enough, I explore the neighborhood or utilize the wonderful indoor track in our town.  I also took this opportunity to sign up for joint-friendly aquatic classes offered at our YMCA.  The majority of these classes are offered during the “regular” 9-5 workday, so they were previously inaccessible.  As I slid into the pool on my first day and immediately felt comforted by the cool water, the instructor recognized the peaceful look on my face.  “The water,” she said.  “It is like medicine.”

These aqua classes have been a game changer for me.  First, they have been a wonderful way to exercise.  I feel no pain when I am in the water.  Second, they are a great way to socialize- which helps address my fear of isolation now that I’m working from home.  With my aqua classmates, I’ve certainly found my place among fellow exercise misfits.  We have a mix of older and younger swimmers.  Almost everyone has limited ability to exercise “on land” due to obesity or injury or chronic disease or age or arthritis.  I love this group of people.

Back home in my office, I relish in my privacy…especially if I have a bad day.  I can sit in my office chair or on the couch and pack my hips or hands in ice without drawing any attention to myself. I do not need to explain myself anymore.

Putting together this post, I realize that I am incredibly lucky.  I am lucky to be on my husband’s (very good) health insurance so that I can be more flexible with my employment options.  I am lucky to work in public health, which is an industry that lends itself very well to contract and consulting work.  My business has been busy since the moment I started in January.  I am lucky to have incredible friends, family, and colleagues that have helped me get my company off the ground.

And finally (in some ways), I’m lucky for this illness. I know so many people that work their whole lives before realizing that they had no work-life balance, were burned out, and missed out on an opportunity for a better life.  Having a chronic illness forces you to consider these questions early.  It forces you to put yourself first and it teaches you to be creative in finding solutions for change.


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Visit Roman Public Health Consulting, LLC, and make sure you check out Leah’s blog, Pop Health. Thanks so much for sharing your story with us, Leah!

Living the Dream (Or, It Takes a Village)

Every now and then, like when it’s well past midnight and I’m setting my alarm for 4:45 so I can get some work done, or when we’re trading notes on how many loads of laundry and changes of clothes Norovirus necessitated, my husband and I will mutter “Living the dream,” and smile (smirk?) at each other.

Of course we always say it in jest, and because sometimes a little levity can make another pre-dawn computer session or raging case of toddler vomit a bit more manageable.

The thing is, though, we really are. Living the dream, that is—our particular notion of what a dream should look like, anyway, and all the lack of sleep and crazy juggling and contagious viruses and daily minutiae pale in the face of that.

I don’t like winter. The days are too dark, everyone is sicker more often, and this winter there are just too many variables to manage—teaching, side projects, book launch, merit review, household maintenance, chest PT, and of course, the really heavy stuff, like watching my father’s kidney failure progress and working on the logistics of a transplant and medically complex post-op care plans. I am tired, and I just want it to be spring.

The irony that spring represents hope and renewal is not lost on me. (But really, I’d be happy with weather warm enough for a trip to the playground, or possibly a nap.)

Anyway, as we claw our way through this snowbound February (and yes, it really is starting to stay lighter later on), I’ve taken to re-framing how I think about nineteen-hour days and the often overwhelming nature of the here and now.

Living the dream. We have a happy, healthy, joyful little girl. When she is at school, she is in a wonderful place where she is loved and where she is thriving. I get to spend so much time with her every day, a lot more time than I would in other professions, and I try not to take that for granted, ever. We go to the library and playspaces and gymnastics class, we do playgroups and playdates. We read books on the couch and hide treasures in her tent and I try to say yes to finger paints more often than not—“Just throw me in the tub right after, okay, Mama?” All the other stress and sadness and obligations of life fade away.

Part of this is because higher education is a bit more flexible schedule-wise, part of this is because I am willing to work late nights and early mornings, and a huge part of it is because I work for a wonderful institution with accommodating superiors and administrators. They support me and allow me to do what I enjoy with students I enjoy. There is room for professional growth, and innovation and initiative is rewarded with responsibility and recognition.

I have an agent and a publishing team who have been equally accommodating, and whose guidance has really helped my writing career. And lately (stay tuned) some incredible writing opportunities have come my way, things I wouldn’t have thought possible if I had sought them out myself, and all I can do is be grateful and give them my all.

My husband is almost two years into starting his own business, and while the hours are long for all of us, the benefits outweigh the (many) stresses. Seeing him get great press or expand his production facilities to meet increased demand is nice, of course. But knowing he is doing something he believes in, and something that while grueling, allows him the flexibility to come to her doctor appointments, drop her off at school, and be present in so many aspects of her daily life, is even better.

Along the way, we’ve been blessed personally and professionally with mentors and cheerleaders, those whose encouragement, advice, and enthusiasm have helped us to take risks and fight for the life we want.

Way back in the day, I wrote this post on how it takes a village when it comes to having chronic illness and raising children. And it absolutely does—when she’s sick or I’m sick or we’re both sick, we need helping hands. But unsurprisingly, my pre-child understanding of that village was a bit narrow.

The village stretches far beyond those who can help out when we’re sick, or watch our daughter so I can go to the hospital. It also includes the cheerleaders and the mentors, the bosses and the schedulers and the administrative staff, the professional colleagues who go out of their way, the doctors, nurse practitioners, and nurses who manage our conditions, my physical therapists, the daycare staff, and so many more. It’s the family and friends who are a constant, and those who understand when life gets complicated and we fall off the radar.

If I’ve learned anything in the months since we started looking for a living donor for my father and we’ve witnessed the amazing outpouring of support and sacrifice, it’s that the web of people who care is intricately linked and stretched out beyond our immediate circle, and beyond the circle beyond that circle, even.

I won’t deny this is a hard season we’re in, in every sense of the term. As is always the way, it seems like there are so many exciting things going on right when so many tough things are. I know things will get easier soon, when the book is launched and I’m feeling better and the work winds down a bit. I also know that things could get much harder before they begin to get easier. I can’t wait for spring, but the enormity of what could happen between now and then is hard to translate.

For now, I am keenly aware of all the scaffolding that exists that supports us and enables us to live this dream, in all its imperfections.

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!

On Working From Home

So in my recent post on working with chronic illness, I mentioned a forthcoming piece on working from home.

Now, before I launch into my experiences with and take on working from home, I should point out some illness-specific benefits: There is more flexibility to schedule doctor appointments, tests, and daily chest physiotherapy. On “bad” days I can still work, even if means moving my home office to the couch and typing over the nebulizer mask. On days when other conditions flare and I can’t move my legs well (for example) I don’t have to worry about how I will get from point A to point B. Less commuting on public transportation and less time in crowded places during the peak cold/flu season means less opportunity for me to catch things that leave much sicker for longer than the average person.

And of course, when I am in the hospital, my laptop and wireless access mean I can keep on working.

I must admit that there are a lot of positives in working from home when trying to manage a career and chronic illness. It doesn’t mean working less—in fact, one of the biggest challenges is that there is little separation from work life and regular life—it just means it is a little easier to work better when my body gets in my way.

I’ve worked from home in some way or another for nine years now, whether it’s a couple days a week during the semester or full-time doing freelance work and writing books. This Boston Globe piece on working from home did point out some relevant challenges and opportunities of working home. I particularly enjoyed the response to the claim that it is easy to take care of children and get work done—sure, bring your child to your office sometime and see how much work you get done!

Anyway, I think the key to working from home successfully is knowing your strengths and weaknesses and finding a routine that works for you. It’s not for everyone. It can be lonely and isolating. It can be really hard to focus and self-motivate. It can completely usurp your home/family balance. Some people get strength from social interaction and do best when they draw from the energy of a group. Some people need regular check-ins and accountability for best results. The point is, know the conditions that allow you to succeed.

For me, it doesn’t matter how sick I feel or how late I was up working or with the baby; I sit down at my desk in my home office every morning, coffee in hand, and go through my inbox/headlines/social media check-in. I break for a brief lunch. I don’t make or take personal calls during my designated work hours: those hours are scarce and precious to me, and I try to make the most of them. Sometimes I need a change of scenery and go to a coffee shop; other times I know I just need to plow through it without any distractions or stepping away from my computer. I make to-do lists every night before I go to bed.

Oh, and before my daughter was even born I knew I wasn’t going to try a full-time course load with a full-time writing career, a large part of which happens from my home office, without some child care. As I mentioned before, even if it means working many hours late at night and very early, my time with her is about her, and when I am working, I just want to focus so I can get it done more efficiently and therefore, have more quality time with my family.

Boundaries are also fundamental. I think many of us, whether we work from home or not, struggle with knowing when to “shut off” work, and this is especially true when our office is in our home and our deadlines are often self-imposed. It’s no secret that balance is hard for me, and I do think working from home exacerbates that.

But creating our own boundaries is just one part of it. The other part is reinforcing those boundaries with the people in our lives. The expectation we can chat whenever, we can make plans any time of day, etc simply because we are working from home can get frustrating, and if I don’t hold up those boundaries (nicely) I can’t expect others to respect them, either.

Sometimes I feel there is an inherent value judgment that other people’s time is more valuable than mine if they happen to work in a traditional office setting and I am at home, that my time is more expendable.

And in a way, it is—that’s both the challenge of it. If I need to or want to, I can step away more easily. I can take my daughter to music class, or go to another doctor’s appointment, etc and make up the time later in the day or the week (or weekend). I don’t work from home a large part of the time for this—it just so happens that writing, editing, being a professor, and consulting lend themselves to a non-traditional work situation—but it is a major positive that is more important than ever now that I have a child. Yet if I am not vigilant and disciplined, flexibility could become a detriment.

Lastly, working from home leaves me in a weird place when it comes to play dates, making friends with other mothers, etc. I am not away at an office every day of the week (during the semester, 2-3), but I am not at SAHM, either. I don’t make plans for evenings often, even on weekends, because I am usually trying to keep my head above water, work-wise.

These are not complaints, merely observations. I’ve made decisions to bring me to this point, ones I hope set me up for the most success in terms of my health, my careers, and my ability to be the mother I want to be. Like everything, there are compromises but for me and in my personal set of circumstances, the compromises are worth it.

Anyone with tips or observations to share? If you’ve made the switch to working from home, are you glad you did? Did you do it for your health?

On Working, Parenting, and Chronic Illness (Part 1)

This week, my spring semester ends.

And while in many ways it was a great semester (engaged, intellectually curious students, new assignments and experiments in the classroom that worked out well), I am profoundly relieved it is over.

I’ve been wanting to write a series of posts about work, parenting, and chronic illness for awhile now; a recent Boston Globe column on working from home only intensified this.

I knew back in December that finding balance would be my main challenge and while I might be self-aware enough to anticipate this, I wasn’t self-aware enough to actually do something about it in time.

During the academic year, I teach a full-time course load, plus other administrative and professional development projects and meetings. I’m also a writer with an impending deadline for an incredibly research-intensive beast of a book. Both are full-time responsibilities.

Like anything, there are compromises and trade-offs to this type of career path, one that is not a traditional office job. I work from home a couple days a week during the year, and work from home full time during summer months. I’ll discuss the pros and cons of working from home in an upcoming post, but the number one benefit of my current career is that it means more time with my daughter than I could ever have in an office job.

(Plus, the health insurance I provide for my family is awesome. Really and truly.)

After all, after working for almost five years and risking my life to have her, I don’t want to miss a thing. This was the promise I made to her and to myself when I went back to work: when I am with her, she gets all of me. No laptop, no hastily typed work e-mails, no frantic checking of the inbox for replies from editors or interviewees or students. I don’t want to be half-present with her and half-present with the other people in my life who need me.

She deserves more than that—and so do my students, and so does my book and all the people who have given me their time and insights during the writing/research process.

Some days (the best days), I am mainly with her. Other days, like when I am on campus, I make sure the mornings and the later afternoons and early evenings are all about her. Luckily, we have had family who have been able to help with watching her some of the time, and a wonderful caregiver some of the time, and the more flexible nature of my work demands means that most of the time, I spend a lot of time with her and make up what I need to do for work at other times in the day. I know we’re fortunate to have help, and I know not everyone does.

In terms of being with her and watching her grow from a precocious 4-month-old just starting to sit on her own to a chatty, giggly little girl who feeds herself and loves turning the pages of her books, in terms of being an active, engaged participant in her everyday life and routines, I have no regrets. I never felt my work took away from her, or took me too far away from her. In this way, my semester was a success.

But, a full-time workload plus a book plus daily chest PT (and all of the logistics of her health needs and doctor appointments) and everything else means that making up what I need to do was pretty challenging. For a lot of the semester, it meant staying up very, very late and getting up hours before my daughter woke up to get stuff done. It meant working almost every single Friday and Saturday night and during weekend mornings and naptimes. And all of that is clearly worth it, because it means I get to pick her up from her crib when she is all smiley and up from her nap, or take her to all her doctor appointments, or watch her devour her sweet potatoes or gluten-free snacks.

However, a schedule like that is not sustainable, not for healthy people and certainly not for people with chronic illness. (Oh, hey, and it goes against practically everything I’ve written about here and in my book, too.) It’s almost May, and the infection I caught at Christmas is still recycling itself through my lungs and upper respiratory tract and causing problems. By February, I started noticing my lung capacity was limited enough that I had a hard time walking through campus and talking at the same time. By March, my adrenals started acting up and some days, my arms and legs were so heavy and concrete-laden I needed a ride to and from work because I couldn’t get myself from my parking garage to my building on the other side of campus.

I realized a bit late in the game that all of this hard work would be for naught if it meant I was too sick to be what my daughter needs from me. Duh, right? My health affects her. What good are the carefully preserved hours with her if I can’t lift her, or take her places, or play games with her?

I’d like to say I had this huge revelation and made all sorts of drastic changes, but responsibilities are what they are. I did need to prioritize even further, though, and that meant letting go of some expectations of how much research and writing I could do during the semester. I don’t get up well before dawn anymore. I try not to schedule activities on both weekend days. I tell myself regularly (no really, I do—I find I have to repeat it to myself) “all you can do is what you can do” and what I can’t get done I leave behind me when I go to bed at night.

My husband, a fantastic father and a wonderful support system, now has a little more flexibility with his time since starting his own business, and that’s made a huge difference. (Even though he’s pulling very long hours himself, it’s amazing how much more time he has to see her now that he doesn’t have an hour-plus commute on the T every day and can walk to his nearby office.)

In the end, I made it. I made certain decisions that upheld certain priorities and I made it through. We made it. Since I don’t plan on ever having a baby and an enormous book due at the same time again, I do think life will be more manageable from here on in. This semester, my body paid some of the price but that means my daughter and my students did not. The beauty of teaching is that next semester, I can try it all over again and hope to do much better at this whole balance thing.

(And between now and then, I’ll finish that book. There’s nothing as clarifying as a deadline…right?)

I know so many of you out there have done this whole working-parenting-being sick juggling act much longer than I have. Any words of wisdom (or, moments of defeat) to share?

An Exciting New Venture (Or, A Better Life…)

In five years of marriage, we’ve acquired two rescue dogs, two different homes, two graduate degrees, four new jobs, two book deals, and after a long (long) journey filled with more challenges and compromises than we ever imagined, we are parents to a fiercely loved little girl.

And now it’s time to announce the next big venture. I am incredibly proud and excited to tell you that as of today, my husband’s new company, The Well Fed Dog, is up and running. If you’ve read the posts about gluten-free cooking on this blog, you know we are both passionate about eating whole, healthy, fresh foods. With experience as a line cook and restaurant manager before he went into banking, John is the one who executes our culinary adventures, and he is happiest when in the kitchen.

If you know us in real life, you know we’re both insanely passionate about our two rescue dogs, and dogs in general, and making sure they are as healthy and happy as possible. (And yes, one of our dogs has a major food allergy, so we know how important knowing what’s in your dog’s food and knowing where those ingredients came from really is.)

Now, John has combined these two passions into The Well Fed Dog, which delivers fresh, all natural, grain-free dog food. All ingredients are human-grade and hand-selected, and all recipes are carefully formulated to meet dogs’ special nutritional needs. The Well Fed Dog also offers locally made treats and eco-friendly chew toys, as well as a totally customizable membership plan and benefits. You can find out so much more about the mission, philosophy, and product offerings by checking out The Well Fed Dog’s brand-new Web site.

This has been a long time in the making, and comes from the heart. It is a big change for him and for our family, and having him doing something we both believe in so much is an amazing opportunity.

So many of you have watched big events unfold in our lives through this blog, and have been such a source of support and encouragement, and I am happy to be able to share this news with you. Whether you’re a dog lover or someone who knows dog lovers, there are lots of way we’d love for you to be involved and spread the word:

• Link to the Web site if you have your own site or blog
• Click this link to “Like us” on Facebook
• Click this link to “Follow us” on Twitter


In my writing classes, audience is the fundamental principle we keep returning to for each assignment: Are my health sciences students writing to peers in the professional realm? To a scholarly, academic audience? To the general public, or a patient (ie, lay person) audience? Such audience analysis gives way to decisions about scope of content, vocabulary and diction, and overall tone and approach.

You need to know your audience for your message to be successful,” I hear myself saying over and over.

And yet lately, when it comes to my own writing, I seem to be so hyper-aware of audience and more specifically purpose, that it leaves me wordless. (I know!)

I’ve mentioned having trouble with balance since going back to work full time with a baby, and have also said I’m trying to get back into a groove. And while part of that does mean simply carving out the time to post with regularity, to comment on the posts I read (because I still read them—it’s something I can do one-handed while nursing), and to engage more fully in this online world, that is only part of it.

I need to find my content groove again, too. So often I have concrete ideas, ideas that won’t go away and keep percolating away until they threaten to bubble over, but then I stop short of executing them.

I want to write about aspects of parenting that are enlightening and humbling, like breastfeeding.

(But this isn’t a parenting blog, so stick with issues of parenting and chronic illness, like knowing when to fire a pediatrician, says the little voice.

I want to write about being a parent after infertility, since I never expected just how much that journey would inform my worldview and my thoughts on this joyful little girl I get to wake up to every day.

(But think about the people reading this who might still be going through the infertility nightmare, cautions the little voice.

And I do want to write about finding balance, and feeling like I am falling down the rabbit hole of work again, except that while there is a lot of pressure right now with work-related stuff, there is so, so much happiness and fulfillment and joy with my daughter that I am worried I will not strike the appropriate balance, one that shows how much my heart and mind have stretched and changed and re-prioritized in the midst of the same old problem.

(But can do you that in a way that is accessible?, queries the little voice.

And as cognizant as I am of what I set out for this blog to be a few years ago, and trying to stay true to that, I am even more aware of how much of what is really at the core of where I am right now is not necessarily my story to tell.

(Just because you’re a writer doesn’t make all your material fair game, chides the little voice, a point that speaks to me more strongly than ever.

I feel myself pulling inward. I do think there are ways to discuss parenting and still relate it to chronic illness, and I want what I write to reflect the huge shift in my life, but I also want to protect my daughter’s privacy and not put too much out there about her. You won’t see her name here, or details about her health, but perhaps there is more room for a little window into our lives with her.

There have been so many changes in the lives of people close to me over the past several months, and the repercussions of those changes affect me every day. But other people’s illnesses are not my illnesses, and though we are all connected, I am drawn by the urge to protect the vulnerability I see.

And here we are. The days are getting longer. The snow banks are melting a little bit. I survived the bulk of winter without getting too sick or going to the hospital. There is a happy baby chattering away in her crib right now, thrilled to be awake and content to tell secrets to herself for a few minutes. And, I have stories to tell. I just need to get out of my own way.

(You’ll get there.)

Down the Rabbit Hole: When Chronic Illness and Work Conflict

“Can I write you a note? Would that help?” my nurse practitioner asked delicately. She went on to add (just as delicately) that I really needed a few days off to recover from my recent hospitalization.

Part of me wanted so desperately to accept her offer, to tell her a note would help and that I could take a few days. I wanted to give in, to crawl into bed and not get out.

But, it was the busiest and most intense period of the semester, busy enough that I found myself commenting on drafts at 4am in the hospital, grateful I did not have a roommate so I could keep the lights on. I was too uncomfortable to sleep, and I’d hit that early-morning window where Law and Order reruns abated for a few hours.

The numerous side projects I was committed to—both on campus and in my writing life—were all ramping up, and everywhere I turned it was apparent to me that too many people would be affected by my absence if I checked out of life for a few days. It’s one thing for me to be sick and fall behind, but it’s not acceptable to me for others to get behind because I am sick. Thanks to wifi, my laptop, and the impossibility of sleeping in a hospital I’d managed to keep up the charade of business as usual while I was an inpatient, but it was exhausting.

The night I was discharged from the hospital I stayed up past 3am trying to catch up on work, and woke up early the next day for chest PT and another 18 hours of work and catch-up. That set the tone for the next week and a half. By the time I had my discharge follow-up appointment, I’d managed no more than four hours of sleep per night: coughing, wheezing, and fighting for air made it hard to sleep; steroids and stacked nebulizer treatments that make me jittery and wide awake made it even more difficult.

Things were not going well. In the ongoing quest for balance and the negotiation of priorities when it comes to employment and illness, I was floundering. Free-falling, actually.

Since this fall I’ve repeated the mantra of “just make it work.” Find a way to get it done, don’t complain, use every second of time efficiently. When you’re sick, you don’t have the luxury of not working when you don’t feel well, or you’d rarely ever work. People do things even when they don’t feel up to it, that’s part of life. Whatever else happens, just make it work. Get results, don’t make excuses.

And for months, that mantra served me well. I’ve made choices that translate into a consistent 7-day work-week; aside from Thanksgiving Day and two days at Christmas, the last time I had a true day off, including weekends, was sometime last summer. I had (and have) my reasons for these decisions, and do not regret them. I went into this with my eyes wide open and cannot complain about a situation I created. The trade-offs—a big step in academic career development; a second book deal; expansion of my freelance consulting business—are worth the sacrifice.

But all bets are off when my “normal” level of illnesses becomes really acute. Part of it is physical-the exhaustion of infections that last for months, the toll fighting for air takes, the impact of weeks and weeks of poor sleep, hospitalizations, etc.

However, more it is mental and emotional, and is a result of a lifetime of pushing. It’s always jarring for me to go from the hospital right back into “real life” without a chance to stop and process. Since the work always follows me into the hospital (when I was getting stabilized in the ER this last time, my main concern was how to handle my in-person class the next day), it always feels like one big blur.

In a throwback to my old patterns, the longer this recent exacerbation dragged on, the more determined I was to make sure being sick did not impact my ability to do my jobs. When I first got home I turned around 40 rough drafts with substantive comments in two days. I attended meetings and jumped into debates and responded to clients. I’m pretty sure no one knew that days before I’d been hooked up to oxygen or that walking and talking at the same time was not yet possible.

Interestingly, though, the more I built up the façade, the more a little bit of me wished it wasn’t quite so convincing, that I had some sort of buffer. I felt like my grip on things was dangerously tenuous; one tiny slip or extra deadline or new symptom and everything would come crashing down.

For someone so wired to be in control and so focused on not slipping on any of these details, I felt (correction: I still feel) very out of control.

I know something has to give. Even though things are getting a little better by now, I will not fully recover if I keep up this pace. When I found myself negotiating my way out of a second admission last week from the Starbucks at work, armed with a briefcase and a hospital bag (doesn’t everyone bring one of those to work?), I realized I’d reached a tipping point. This is not sustainable. In fact, it’s sort of crazy.

I am not balancing things at all and I know it but I am torn by conflicting responsibilities-to my students, clients, colleagues and myself. I am torn my stubborn pride about never giving in and pragmatism that says if I keep this up I won’t be of much use.

So I have some decisions to make. I have to prioritize my life so I make it through the rest of the semester as effective as I normally am.

And just one good night sleep? That would go a long way, I think.

Looking Back, Looking Forward: 2010

There are so many good year-in-review and decade-in-review memes out there already so while I won’t be joining in on them, I can’t let 2009 slip by without some commentary on it.

In my little corner of the universe, 2009 definitely had its high points: I signed a deal for my second book during a very tough economic spell, I met Bill Clinton and chatted about health care reform, and I pursued new academic and freelance opportunities. I am incredibly grateful for all of these experiences.

I thought and wrote a lot about hope this year, a word that is as closely related to these high notes in my life as it is to the low ones. In fact, I’d argue that when I felt fragmented and run down or when I was disappointed, when all I could do was focus on just making it work, hope was even more important.

I’m not into making resolutions this year. I’d rather take what I’ve learned from 2009 and apply it to 2010. Despite some really great developments, 2009 was a long, tough year, a year that pitted my strengths against my weaknesses in a major way. I am a planner and a control freak, and the more crazy life (and health) gets, my tendency is to push back even harder. I had a ton of pressure on me this year, and so much of what I needed to do hinged on me being able to control the one thing I can never fully control: my health.

In a much broader way, I think 2009 was a year that challenged so many of us on that front, healthy or otherwise: sometimes we can do our very best but other factors can dictate so much of our success or failure.

It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.

When I think about the past year and the past decade, I have to admit that some of the most important and life-changing developments were ones I never planned for, never even knew to look for: meeting my husband (six years ago tonight, actually); getting my MFA, meeting the friends in college, graduate school, and beyond who mean so much and who feel like family; starting this blog; etc.

There are many more examples like this, but the point is, sometimes you just have to be open to chance and possibility. All the planning in the world does not guarantee we will get what it is we think we want, and sometimes we don’t know what we want or need until we find it. At points this year I think I was so bogged down in surviving that I lost sight of the importance of the unexpected, that sometimes hope means trusting in what we cannot yet envision.

In this post, I reflected on the idea that a person needs three things: someone to love, something to do, and something to hope for. This is what I want to carry with me into 2010, and into the next decade.

Have a wonderful (and safe) New Year’s, and may 2010 bring you as much health and peace as possible.

Thank you for reading.

When Silence Speaks Volumes

I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.