New Year’s Anniversaries

For a long time, the holiday season was more than simply a time to decorate the house, see lots of family and friends, and engage in all the rituals and traditions we hold dear. It was also synonymous with being in the hospital—for seven out of the last eight years, I’ve spent either Thanksgiving and Christmas or the days before and after them in the dreary world of the hospital.

Between end-of-semester craziness, grueling hours, all the associated extras of this time of year, and the infections and viruses that go hand in hand with the colder months, I didn’t stand a chance of getting an infection and not ending up in the ER or the inpatient floor.

While Christmas and Thanksgiving and all the time in between are marked by illness, New Year’s has started to take on much more positive associations for me. Three years ago on New Year’s Eve, I met the man who would become my husband. (See the article about this published in the Boston Globe Magazine here). With that meeting, my life began to turn around. Right round the same time, I was diagnosed with PCD and celiac disease, started my daily chest PT and rigorous new medication regimen, and finally began to fully understand why I had always been so sick. Just as my medical history finally started to make sense and I was on the right track in terms of establishing some stability, my love life fell into place as well.

Since then, New Year’s Eve has been much more meaningful to me—I’ve always hated the stupid hats, noisemakers, and inevitably disappointing parties that symbolize typical New Year’s revelry. But now it’s the anniversary of when I met John and stands for the period in my life when things started to change for the better in every sense—which, by the way, is no coincidence.

Every New Year’s since then I try to build on that sense of renewal and hope and try to build on the gains in my health (and my relationship and professional life) that I started to accumulate three years ago.

Last New Year’s Day I needed to go to the hospital. However, unlike most of the trips of my holiday past, I was only there overnight. This New Year’s was a huge milestone for me because it marked exactly one year since I’ve needed to be hospitalized for respiratory problems. Sure, I’ve had plenty of nasty infections, lots of bad days, and new complications. But I’ve been able to maintain a stable prognosis for 12 months, something I haven’t been able to say in more than a decade—here’s hoping 2007 continues the trend.

For all you chronic people out there, no matter what your goals for 2007 are in terms of maintaining your best health, lots of luck!

A Relationship in Numbers

As some of you who have read previous posts may know, I have been thinking a lot about numbers and statistics lately—what they mean, how they define us, and, more importantly, how they fail to capture what cannot be so easily quantified.

In digging through research for my book proposal, I unwittingly came across the following statistic: The divorce rate in marriages where chronic illness is present is over 75 percent.
(see http://www.mychronicillness.com/invisibleillness/statistics.htm.

Now, I am not here to debate the accuracy of these statistics or discuss the methodology behind them, but they did make me stop and think. I was told recently I had a 75 percent chance of not having children on my own, so I approached this statistic with the same question: How do you know if you’ll be in that lucky 25 percent?

Seventy-five percent of marriages where chronic illness is present do not last. That is an overwhelming number to me, and it might be misleading. People divorce for all sorts of reasons, and it doesn’t necessarily mean there is a cause and effect relationship between chronic illness and divorce. It could be one of many mitigating factors, but looking at the statistic, it’s not possible to weed that out. But certainly between lost income due to sickness, high medical bills, loss of identity, pain, frustration, etc, there are a lot of ways to look at how chronic illness could be implicated in these findings.

Just as with my fertility issue, I don’t think there’s any way to know how to be part of that 25 percent except to try. The odds obviously don’t speak in our favor, but that’s why yet again I am glad that I don’t put too much stock in statistics.

One would think that the stress and tension in marriages would increase with the number of illnesses a person has or the number of people in the marriage who have illnesses—so perhaps a marriage where both spouses have multiple illnesses would really be on the losing side of the odds, right?

But maybe not. Maybe we can look at this from the complete opposite direction. Consider the case of my parents. They married in their early twenties, both believing they were fairly healthy. At 26, my father was misdiagnosed as having muscular dystrophy, a misdiagnosis that lasted seven years and whose toxic steroid treatment left him a diabetic. When he was 32, he had a cancer-ridden kidney removed, the tumor spurred on by the rare neuromuscular disease he’d actually had the entire time (polymyositis). When he was 39, he had a heart attack and an angioplasty. When he was 43, his polymyositis relapsed and he’s been on chemotherapy ever since to try and control it (14 years). Last month, he had a cardiac stent implanted because he had several blockages.

He’s a regular Lazarus in the flesh, no? So how did my mother stand it all these years? Let’s add in the fact the she’s been sick for over two decades herself. She has severe arthritis and degenerative joint disease. She’s had several major reconstructive joint surgeries, has gotten to the point where she’s needed a wheelchair, and is in constant searing nerve pain from her fused spine and crushed discs.

And yet with all the serious illness, the near-death experiences, the years of pain and setbacks and stress and frustration, they have one of the best marriages I have witnessed. They are loyal, supportive and loving towards each other, and understand and anticipate each other’s needs perfectly. I think this is because they have both suffered a lot and therefore can empathize with each other so well. There is no room for anger or resentment because they are too focused on each other’s best interest.

Maybe the more illnesses you have the more you learn to adapt and cope. Maybe when someone you love suffers, you understand your own suffering better and can put it in perspective. Maybe when you’ve been asked to face difficult truths and grim statistics so many times and have always beaten them, you begin to really believe that no matter how bad things are, there is seriously nothing the two of you can’t handle. Maybe you learn that yes, you will suffer losses and frustrations that most people will never begin to imagine, but you also learn that hope will never abandon you altogether, either.

But maybe if we’re playing the numbers game, my parents are just plain lucky they landed in that elusive 25 percent?

Not a chance. They are there because they earned it.

So I have two choices—I can look at the numbers and feel overwhelmed, or I can look at my parents and know what is possible even under extraordinary circumstances.

An Illness of a Different Animal

My family’s dog died today. He was a 14-year-old golden retriever and had, in every sense of the word, far outlived our expectations. I could write forever about all his wonderful traits and everything that made him such an amazing dog (and there are endless examples) but I’ll simply relay that Zach was so popular he got more Christmas cards every year than I did. And I’m not really exaggerating.

Even though we all knew we were living on borrowed time with him—despite relatively few health problems given his advanced years—the news still hit me with head-on force.

It all happened quickly, my mother told me, by way of reassuring me that I couldn’t have been there. He had seizures at 8am; the vet quickly came to their house, and with my parents, my brother, my niece, and my grandmother all around him, Zach then went pretty quickly.

Of course I should have been there, but death is exceedingly slippery when it comes to logistics and planning. He was “my” dog from the day we brought him home when I was 12 until I formally moved out of my house and into my own place. My mother brought clothes from my old room down to the kitchen floor and placed them next to his head so he could smell me, but that seemed so paltry a substitute in his last moments.

“I asked him to hold on for me until I was feeling better,” my mother said through quiet tears. For four years and through three major surgeries, many setbacks, and excruciating pain, he never left her side. “Heaven help us if he goes, what will we do with her?” we all asked one another, knowing that being basically housebound for so long was hard enough for my mother. Having to do that without Zach curled up on her feet, standing guard at her bedside, or giving her comfort when she needed something to hug? Almost inconceivable.

It is no coincidence to my mother, then, that just last Thursday she turned the corner and began to have some semblance of a “normal” life. The searing nerve pain, the crushed discs, the inflamed joints, the overwhelming exhaustion—they all seemed to have finally settled into a tolerable state—not gone, but subsided enough so that she could leave the house an unprecedented three days in a row.

“I’m back,” she declared on Thursday, again in Friday, all the way through Sunday night. She even managed to get some sleep Sunday night—another recent triumph, given her constant pain—and Monday morning, Zach died.

Whatever guilt I had about growing up and moving out on Zach was tempered by the knowledge that he now had another role, an important one—watching over my mother as he had done for me. The first full day we had Zach, he and I bonded: I was home from school sick with bronchitis, and he jumped up on the couch and curled up on my feet. Through countless infections, surgeries, and setbacks, Zach spent years resolutely at my side, nestled on the couch when I was well enough to set up camp there, hovering on the floor next to my bed when I was too sick to be anywhere else.

When I left for college, he spent several nights in my room, waiting for me to come to bed so he could sleep. I came home less and less, I eventually got my medical situation under somewhat better control, and someone else needed him more.

“He’s amazing, he never leaves your mother’s side when she doesn’t feel well, even if it means staying there for hours,” my father would often report to me over the phone. I would nod, picturing him and conjuring up a scene I knew so well.

This morning it was his turn to be sick and luckily he was surrounded by people who adored him. I cried and hugged my own dog, one-year-old Sasha, and was glad that in the end, Zach had what we need most: a companion in the midst of suffering.

When Illness and Empathy Clash

By all accounts, it was an innocent remark. I was on the phone with a good friend of mine who was recovering from a particularly nasty cold. Her voice still sounded a bit nasal, and she excused herself once to cough. “Not that I should be complaining about a little cold to you. I feel sort of stupid since this is nothing compared to what you deal with,” she said when she returned to the phone. She sounded sheepish.

I reassured her that that of course she should tell me about it, and I meant it. She sounded absolutely miserable, and a cold is annoying and incapacitating no matter how healthy you are otherwise. We moved on to other things, but her comment lingered in my mind. I don’t ever want to become a martyr for my illnesses, nor do I want them to influence the balance of give and take that exists in any good relationship.

Implicitly, my friend’s comment showed that she understood the realities of my life—serious lung infections, hospitalizations, exhaustion, etc—as best as she could from her perspective as a healthy person. So why did we both feel so awkward in that particular moment? The healthy and the sick have competing rights to compassion and empathy, an idea that makes total sense in theory but can be difficult to put into practice.

Don’t get me wrong, my friend’s exaggerated sensitivity towards my illness was far easier to deal with than the reverse reaction. Like most, I’ve had my share of negative responses to illness. There are volumes of stories out there of people who doubt our illnesses or dismiss them altogether. This is not a point I will belabor, but it is a common phenomenon.

What concerns me isn’t so much when other people don’t respond to me with empathy or compassion but when I am not able to extend those courtesies myself. It’s the dirty little secret of chronic illness, I think. Most of the time, like when my friends are sick or someone I know has an aggravating experience at a doctor’s office, I know what to say and do and how to be what they need from me at that time.

But there are other times when I do not feel as gracious, when I am exhausted from an infection or overwhelmed with getting my life back on track after a long hospitalization and I do not have the resources to respond to others with empathy. It’s almost as if illness removed me from the everyday world of everyday complaints and created a distance between healthy people and myself that I couldn’t just automatically bridge. I was stuck in one place—fear, frustration, etc—and I couldn’t relate to other people. Or wouldn’t relate, to be more accurate.

Deep down, I just wanted to say “Suck it up!” to the woman in the chair next to me at the doctor’s office who complained of pollen allergies, to the acquaintance at work who went on and on about how stressful her life was, or to the person who treated a mild case of strep throat as the end of the world.

For a fleeting second, it is so tempting to respond with something like, “Well, I just got out of the ICU recently because my lung collapsed” or “This is the first day I’ve been able to walk or brush my own hair for a week because my adrenal glands do not work.” I longed for the shock value I imagined those comments would elicit.

But to say such things would make me my own worst nightmare, a martyr for my illnesses. That kind of response would erect a wall between anyone who couldn’t compete with my illnesses and myself. It would also mean I was acting with the very same lack of empathy I find so frustrating in other people.

So in those moments I smiled and nodded in the appropriate places and murmured expressions of concern, but that doesn’t change the fact that my intentions were not genuine. Even though I said the right things, it didn’t mean I always felt them.

Eventually I regain my place in the pace of everyday life and I am not so temporarily boxed in by illnesses that I cannot let anyone else’s needs enter into my thoughts. I regret these instances of resentment because I am not proud of my reactions, but ultimately I take from them the idea no one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are still entitled to the same empathy and to the understanding of others that we want most in our darkest moments.

What Bridal Boot Camp Didn’t Teach Me: How to be a Chronic Wife

When I got engaged, my mother gave me her yellowed copy of the Better Homes and Garden’s bride-to-be handbook. It was a nostalgic gesture since her mother had bought it for her, and much of the advice was charmingly anachronistic: gelatin molds were not in our meal plans, and I didn’t see myself having time before we both headed out the door each morning to arrange a multi-course breakfast, complete with freshly-cut flowers.

So the hardcover handbook made its way to bookcase, and a slew of bridal magazines soon took over the coffee table. I had no end of advice on how to choose dresses, where to go for a honeymoon, and what I should look for in florists. At my church’s marriage prep course, we spent a few evenings with strangers discussing our finances, spirituality, and sexuality. Slightly awkward, yes, but helpful.

Armed with all this engagement ammunition, I thought I’d covered all the bases. But what I didn’t stop to think about was exactly how I would approach being a Chronic Wife, and all the adjustments that entailed—and of all the roles and responsibilities my new life would demand, this was one of the most significant.

I’d gotten the role of Chronic girlfriend down well. There had been the initial hesitations—will he get scared off by all this?—and the pivotal breakthrough moments—realizing I liked having him there when I recovered from lung surgery and didn’t need to hide my realities from him. I loved that I had found someone who accepted me, medical calamities and all.

From the beginning, illness was a part of our relationship. Sounds obvious, yes, but it wasn’t always that easy to be forthcoming. Before we’d said “I love you” we’d battled through some scary infections and complicated procedures, so I knew we had what it took to face things together in the long term.

The hard part for me was that I was used to being the one in charge of my health, whether that meant deciding when to call the doctor or go to the hospital, deciding how many work-related projects to take on, or dealing with a new diagnosis. I turned to my family when I needed support or advice, because both my parents had been sick my entire life and understood my situation so well and my brothers were more than used to thinking in terms of chronic illness.

But now I needed to work John into this equation, terminally endearing and shockingly healthy John. On one level, I needed to break away from my habit of dealing with issues or making decisions on my own or with my parents. As my husband, he needed to be the one I turned to for this, just as I turned to him with everything else. He was willing and able, and I had to trust him with that one last piece of vulnerability.

But this was about more than whom I should consult when faced with a medical decision. On a deeper level, it meant realizing that each decision I made affected him, too. It wasn’t just about me anymore, or how much I wanted what I did to define me, not what I had.

If I took on too much work and my adrenal depletion worsened, he was the one who had to pick up the extra slack, whether that meant folding all the clothes I’d meant to finish, ferrying me around to do errands when I was too weak to drive, or skipping events we’d planned on because I couldn’t get out of bed. If I didn’t slow down when I had a respiratory infection and it lingered, it was John who spent nights sitting in a chair next to my hospital bed, sick with worry and exhausted.

Of course, I can’t always control when I have bad days—they are simply part of chronic illness—or when I get infections that won’t respond to medications and I need to be hospitalized. My husband understands that, just as he understands my need to keep pushing. But he’s helped me find a balance between the two.

What I can control are things like staying on top of my daily chest physiotherapy, making realistic decisions when committing to events or making plans when I am not feeling well, and pacing myself when it comes to figuring out how many writing classes I should teach each semester or how many freelance gigs I can juggle at once. The “old” me jumped at every opportunity without thinking, so eager to prove to myself that being sick didn’t mean I couldn’t do everything I wanted to do, and the old me often lived with the serious consequences of that.

I wasn’t going to drag John into that same old cycle.

The married me still has that impulse to jump each and every time I see a great writing gig, another section of a class opens up that I can teach, or I think of some new independent project I just have to start. I’d be lying if I said I didn’t. The difference is now I actually stop to consider the ramifications on my health and my marriage.

It’s good to turn to him when I make a decision, but even better to consider what my decisions mean for him before I make them at all.