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.

Just Say No

For a brief time, I completely forgot that as a patient, I have the right to say “No.”

For years, I’d been conditioned to follow the prescribed regimens and treatment protocols handed to me by a variety of specialists. I was an informed patient—I knew the technical terms for body parts, I knew the correct medications for different conditions, and because I knew my endocrine, respiratory, and autoimmune systems better than anyone, I knew when to question the experts.

Because I had knowledge, I had power. While I spent a lot of time undergoing procedures and shuffling from one office to the next, I knew why I was doing it, and I agreed with the rationale.

This isn’t to say I had become smug, but over the years I had definitely acquired an air of confidence and even authority as a patient. I respected my doctors and their vast body of knowledge, but I realized that in my own way, I had a lot of expertise as well.

And then I entered a new specialist’s office—in this case, a fertility specialist—and any confidence or knowledge I thought I had quickly disintegrated.

I found myself nodding meekly to rapid-fire assessments of my ability to have children, and all sorts of terms and conditions washed over me. I stumbled to wrap my mind around the new words and their implications, and I was always one step behind the physician.

I left the brief consult with a daunting list of blood tests, procedures—some simple, some fairly invasive—and names of other sub-specialists with whom I needed to schedule appointments. I waited in the hall for my blood to be drawn—at least I could cross one task off of my To Do list that same day—feeling completely overwhelmed and completely out of my element.

“This must be what it feels like to be a new patient,” I thought to myself, having never been in this position before.

We were on a mission to rule out every single possible fertility problem first, theoretically making it easier to know what was wrong if I tried to have children and it didn’t work. I’d played this diagnostic game of exclusion before for other problems, but I’d always had symptoms or some sort of evidence to back up these expeditions.

Now, all we had was the knowledge that most people with my respiratory disease, PCD, have trouble having children because like the cilia in the respiratory tract, the cilia in the reproductive system either did not work or did not exist. There is no test or way to find out for sure if this is the case for me, an irony because of all the tests laid out for me, this is the one I really need.

Dutifully, I had my blood drawn. I made appointments with reproductive endocrinology and fetal medicine high-risk specialists, agreeing that it made sense to assess my risks and my medications well before I was planning on having children.

And then it came time to schedule a particularly invasive and painful procedure, one that would rule out a condition no one for one second even thought I had. The procedure itself wasn’t something I’d heard of before or knew anything about, but being a diligent patient, I tried to figure out a time to have it that didn’t conflict with my numerous other appointments, my physical therapy, my teaching, my writing, and my “down” time.

Then I stopped and thought about it, and about all the time I had carved out for exams and consults and procedures and surgeries over the course of my lifetime, all the sacrifices of time and inclination I made to do what was right for my health, what would give me answers I needed.

And I decided this wasn’t one of them. I barely had enough time to do the things I wanted and needed to do; an invasive procedure to confirm I didn’t have what we already knew I most likely didn’t have simply wasn’t a priority right now. Maybe down the road it will make more sense and yield the kind of information we needed, but not now.

“Can I do that? Can I just say, ‘No thanks, not right now. We’ll shelve this one for later?’” I asked my chest physical therapist as the test day loomed nearer.

“Of course. It’s your body and your decision,” he said, surprised that I even had to ask since the old me never passively accepted medical advice at face value.

As if snapping awake from a trance, I realized he was right. Simply because the option was there didn’t mean I had to select it, or that saying “No” meant I was somehow a difficult patient or consumer. Saying “No” meant doing what was best for my body and my spirit based on the facts at my disposal. Even if the procedure and all the terms weren’t things I knew well, I still had a lifetime of experience to help me make my decision.

Filtering the Noise

Information, as my first-year writing students and I discussed the other day, offers both unlimited potential and unlimited responsibility. What began as a classroom discussion of public health campaigns segued into a conversation about our overly saturated world of cable news, wireless Internet, and twenty-four hour headlines.

How do we know what to classify as important, even essential, and what can be pushed aside for now? It’s a question that faces all of my writing students, certainly, but also one that touches on the core of what it means to be a chronic patient.

As soon as class got out, I headed to a podiatry appointment. My dog had eaten my orthotics, which was probably a blessing because they were several years old and I really needed new ones. Once inside the exam room, the doctor and I spent the requisite amount of time going over my medical history, starting first with the chronic conditions, then the joint problems.

“Well, I had my right ankle reconstructed when I was 14, and I’ve sprained my left meniscus a few times. But both feel great right now, no problems. I have tendonitis in my left hip and my left arm, but I’ve got that under control. I’m your typical flat-feet, hips-turned-in, rolling-ankles patient who needs orthotics,” I told him.

He began the exam, rolling and flexing, pushing and prodding. No problem.

He put pressure on my left heel. I yelped. He put pressure on my right heel. This time, I winced.

“So you have heel pain? When does it bother you?” he asked.

I explained that I didn’t have pain too much, just every morning when I woke up and put my feet on the ground and anytime I walked without wearing my orthotics and sneakers. It had been like that for a couple of years.

“So, what you’re saying is that they hurt every morning and whenever you put weight on them without wearing orthotics?”

I nodded, feeling sheepish. When he put it like that, it sure sounded like a lot of pain. Not intense pain, but pain that occurred regularly.

Turns out, I have plantar fasciitis, a condition where the tissue connecting the heel bone to the toes is inflamed and tight. It’s an injury of overuse and often affects people with flat feet. He recommended different stretching exercises and splints to wear at night. Physical therapy and anti-inflammatory medication were other option if that didn’t help. If it had been bothering me for an extended period of time I probably should have seen someone earlier, he added.

I smiled. Managing the different treatments and therapies and evaluating the various symptoms of my medical conditions could be a full-time job if I wanted it to be. The heel thing was a nagging side nuisance, a faint hum of static that came in on my frequency. Symptoms are yet more pieces of information my brain has to process every day, and sometimes I only have time or inclination to deal with the urgent ones.

That being said, I am glad my dog ate my old orthotics so that I was forced to address my plantar fasciitis. After all, as a journalist I know that sometimes a valid point or important headline gets buried in the text or the Web page and you need a good editor or careful reader to point it out. My heel problem is not major, it’s not glamorous, but it is something worth recognizing.

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.

Boo Radley Emerges from the Shadows

My first year out of college, my friends and I started referring to my extended absences from social life as my Boo Radley phase, in reference to the hermetic recluse in To Kill a Mockingbird. At the time, my lungs were totally unstable and I was in and out of the hospital all the time. Whenever I was home, I was too tired from fighting infections and trying to stay on top of my work projects and grad school assignments to do anything else.

Clearly, it was an isolating time. Despite secondary medical conditions that have sidelined me, my lungs have been much more stable over the past year or so, and it’s been awhile since I cracked a joke about being Boo Radley to friends as I called them to cancel plans.

And yet as Labor Day Weekend fades into the past and autumn is no longer deniable, I find myself feeling a little bit like good ol’ Boo, emerging into the daylight for the first time in a few months and figuratively blinking in the light. It’s the first day of classes at the university where I teach, forcing me to realize just how long it’s been since I’ve had to function in the outside world.

As a writer and a professor, I relish the summer. No student essays to distract me, to trips to campus to meet with students. I can write, write, write (in theory, anyway)—and I never have to leave my home office. Except for intense two-week portion of a year-long fellowship program I am in this July, I haven’t had a set schedule since May. Don’t get me wrong, I did get a lot done. I wrote a ton of freelance articles, I pitched other ideas to editors, and I accomplished the most time-intensive and professionally significant task of the summer, getting an agent for my first book.

But I spent the summer in my gym clothes (which also double as my chest PT clothes). When I didn’t feel well or the humidity got to my lungs, I rested. When my energy levels plummeted—as they often do—I curled up on the couch with my laptop resting on my legs and did my work that way. When I had bad days physically and didn’t feel like dealing with the outside world, I didn't have to. And I never wore heels.

Now I am back in the world of the healthy—at least three days a week, anyway. I am teaching courses about writing for the health professions and how language shapes constructions of health, and the one of the largest roles I play, that of patient, falls all the way to the bottom of the list once the semester begins. Officially, I am an instructor and a writer, and all the signs and symptoms of illness I didn’t have to hide over the summer are back under wraps.

I am really excited and passionate about my content and courses (how could I not be?), and am ready to assume the role of healthy person…almost. I just need a day or so to get used to my September persona..and the heels.