Back in Chronic Town

May 18, 2020 at 3:11 pm (Uncategorized)

It’s been nearly three years since I’ve posted something here.

There are a few reasons I stopped posting.  Looking back now, I can see that I felt like I ran out of things to say about my chosen blog topic—trying to live, love and parent as fully as possible with a chronic illness.  My life during the first year of my silence online would seem familiar to anyone who was a loyal reader.  Pain, sickness, time in the hospital, time out of the hospital, time back in the hospital.  Sometimes I struggled to feel at home within my family, feeling like my illness was an impassable boundary that kept my husband, Jay, and my son, Andrew, from ever fully reaching me.  Sometimes I was able to put these fears aside and enjoy a funny story at the dinner table, a cup of tea with a good friend, an evening watching TV with Jay.  I’d written about all this before, and every time the cycle of my health and my emotions turned over, I started to feel like a failure.  Back in 935 BCE, the writer of Ecclesiastes got it right. “What has been will be again, what has been done will be done again; there is nothing new under the sun.”  I couldn’t bear it anymore.  Writing about it made it extra oppressive.

I hit one of my lowest lows in the summer of 2018.  I spent another three months in the hospital.  Instead of the usual vertigo and head-splitting pain that had characterized my neurosarcoidosis for years, I began to have debilitating gastrointestinal issues.  To be blunt, I puked all the time.  I couldn’t even keep pills down.  Maybe because I was more aware of this hospitalization (because I didn’t need high-dose narcotics to manage the pain in my head); maybe because my local doctors were overwhelmed at having me back in the hospital with more inexplicable symptoms they couldn’t help me with and my insurance company breathing down their necks to fix me and stop spending so much money on me; maybe the cumulative toll of fourteen years of serious illness hit me in one giant wave.  Maybe it was all of these or none of these, but I simply could not cope with thinking about sickness—much less writing about it—anymore.  I found new doctors who worked with old doctors who helped figure out what was happening to me.  The disease was attacking the nerves that controlled my digestive tract.  I was also diagnosed with medical PTSD.  I decided to put all of my thoughts and energy into my family and getting as well as I could.  I would only think about sarcoidosis when sarcoidosis made me think about it.  I stopped writing for the blog and set aside my goal of writing a book-length memoir version of it.  I was officially sick of being sick and decided never to write about being sick again.  When I was sick, I would deal with it; when I was feeling less sick, I would put it out of my mind.

Something miraculous happened after that last hospitalization.  I don’t like to write about it or talk about it, for fear that I will somehow jinx myself.  (I just knocked on my old wooden teacher’s desk.)  Here it is in a nutshell: I’ve gotten a lot better.  I am not well.  I still operate with about 60 percent of my old energy on my best days.  I still need handfuls of pills, needles filled with medications, and monthly infusions of other people’s immunoglobulin to keep me going.  I still have days when I have to retreat to bed.  But no hospitalizations, no periods of illness that stretch indefinitely into the future.

All of that puking started me on a path of weight loss.  I continue to struggle with nausea, and that, combined with feeling well enough to exercise some days, has helped me lose 105 LB.  I went from a size 24 to a 12.  Even better, I’ve been able to go hiking with Jay and Andrew.  The other day on a walk, Andrew said, “You’re going kind of fast, Mom.”  This is from the 16-year old who usually strides ahead of me a few feet.  My greatest joy in feeling better, though, has nothing to do with the clothes I can wear or the possibility of seeing an abdominal muscle.  I have been able to be in my son’s life in ways I had always hoped and planned to be, but never could be in any consistent way.  He is a teenager, so it’s not like we’re spending all our time together.  I see his closed bedroom door more than his lovely face, which I know is as it should be.  But I have noticed that he laughs more with me, that he gets mad at me again, instead of tiptoeing around me.  He relies on me when Jay travels for work, and gets annoyed when I don’t live up to his expectations.  This is thrilling.  My relationship with Jay has changed too.  He in no longer primarily my caregiver.  His work life has blossomed, in part because he can count on me to run things when he is gone.

I continue to work through the trauma that so many years of hospitalizations, surgeries, rounds of chemo, invasive tests, and gruff doctors who told me things like “You could drop dead at any moment” created.  I am more anxious that I used to be.  Perhaps this is partly physiological.  I am off so many of the narcotics that numbed me emotionally, as well as helped with pain.  But, as anyone with a chronic illness knows, I also live with an acute awareness that the other shoe could drop at any time.  In years past, I had better times too, and they always ended without fanfare and delivered me right back into a narrow hospital bed.  One time, I went literally from being on a hiking trail with a friend to the hospital the next morning.  I try very hard to live in the moment I have and not worry about tomorrow.  But this does not come easily to me.  I think this is my life’s work—to accept who and how I am now.

Like the rest of you, my life took a sudden turn with the arrival of the coronavirus.  I doubt I would be writing this if it weren’t for the pandemic.  I have been concerned about my health.  I am both immunocompromised and have an underlying chronic respiratory disease.  My sarcoidosis specialist has been clear that I would likely have a “bad outcome” should I get Covid-19.  I’ve been reading and thinking a lot about this pandemic and realized that, along with everyone else in Chronic Town, I have a unique perspective on this chaotic time.  Years ago, I learned to do what we now call sheltering in place.  All the immunosuppressants thrown at my sarcoidosis made me too vulnerable to venture out into the world.  I’ve watched on Facebook as people chafe or accept realities that seemed normal to me years ago.  On a deeper level, though, I think my time in Chronic Town has prepared me to accept that all of the “givens” we humans rely on to be able to sleep at night—that our work will be there in the morning, that our lungs won’t dissolve because of a virus, that our children are gliding towards an acceptable future—are illusions that can vanish in a moment.  I look back on my sixteen years in Chronic Town and see the losses tailing behind me like a boat’s wake: my work, my health, my relationships, my future, my independence, my physical strength, my dignity.  I see many Americans quite rightly struggling with similar losses now.  I also understand their desperate flailing, almost a petulance, that they deserve their “normal” back right freaking now.  No more lockdowns.  No masks that remind them of their fragility.  No extra measures.  I’ve been there in my own ways before, sticking my head so deeply in the sand to maintain an illusion of a reality that is gone.  This doesn’t mean these flippant virus-deniers don’t make me angry enough that I can’t breathe sometimes.  Their insistence that it’s all about what they want in this moment make my life and the lives of anyone with an underlying health condition exponentially harder.  I want them to grasp that all of these losses need to be grieved, and that eventually we can rebuild.

Using the lens that chronic illness has given me to think about our new Covid world, has prompted me to start writing again about health issues.  I’ve been trying to use my personal story as an entrance into broader topics that affect us all.  I have a couple of essays that I’ve submitted to different national publications.  But they had the audacity to turn them down!  Rather than let them collect metaphorical dust on my hard drive, I have decided to post them here, and to take up musing in this space again.  Maybe having the New York Times repeatedly reject everything I produce is a new opportunity–to rebuild community, to circulate some old ideas in new ways that could be helpful to others.

Perhaps there is something new under the sun. Or, at least, a new way to think about the same old stuff.

Be well.

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For Whom The Bell Tolls

July 17, 2017 at 2:16 pm (Uncategorized)

There’s a lovely ritual at the Cancer Treatment Center, where I go every month for my infusions. When the doctor declares a patient’s cancer to be in remission, she gets to ring a bell. It’s a signal, a marker that pinpoints a moment when she moves from the land of the ill back to the realm of the healthy. It’s a touching ceremony. All the nurses gather, and the whole treatment center applauds the lucky patient’s good news.

I want to ring that bell. But after over thirteen years of living with a chronic and serious illness, it’s not looking like an end is in sight for me.

We are narrative creatures. We construct stories out of our lives that have beginnings, middles, and endings. We shape what could seem like the chaos of everyday life into narratives: how we fell in love, came to our careers, raised kids, or got into trouble. It’s no surprise that illness narratives follow a similar arc—the lump, the biopsy, the treatment, the remission. Ringing the bell is a perfect moment in the story of an illness. Right here, at this point, I became well again.

Chronic illness doesn’t fit the neat narrative strictures by which we like to organize our lives. There is no neat ending in Chronic Town. The narrative of my illness reads like this: bad cough, biopsy, treatment…treatment…treatment. Sure, there have been ups and downs. I’ve had lots of dramatic material—months in the hospital, becoming a parent at the same time I got sick, and watching the disease move throughout my body. But there is no ending. There’s just more illness (or, on good days, less illness).

It took me three drafts of my memoir to realize I couldn’t stuff my experiences with a chronic illness into a classic beginning-middle-end narrative arc. But without a clear ending, I couldn’t figure out how to structure the book. What’s the dramatic turning point? Where does all the suffering lead to? Ultimately, I was wondering, what is the point? I finally realized how to write my book. Instead of one progressive story, I chose instead interweaving essays. The structure mirrors the reality: there is no ending, only layers of illness.

I’ve also gotten better at living in the shadow lands of chronic illness. For many years, I kept waiting to get better to embark on projects. Which only meant that I rarely started anything. It was a problem of mindset. I had to learn to live and love with an illness without an ending in sight, which proved to be pretty damn challenging. When something as big and brutal as a serious illness hits you like a semi-truck going ninety miles an hour, your inclination is to wait until you’re “better” to be up and around and moving. But after a baker’s dozen of years of not getting better, I’ve had to embrace the chronicity. This means showing up to the life I have at this moment, without the luxury of knowing whether or when the challenges will end.

What does this life look like? People ask me how I do it. When I step back, it occurs to me that it’s really just like living before I got sick—except with an acute awareness that everything can change in an instant and the knowledge that I must seize whatever scraps of energy and well-being I have to do something now. Which actually turns out to look a lot like living mindfully in general. When you stop to think about it, we all live tenuously, with the weight of our incipient mortality on our shoulders. Some of us just have more acute reminders of that than others, or more moments when the incipience of that mortality sits at a much greater remove.

I can sometimes find comfort in thinking of it like this, that my illness has made me appreciate my good days more than I might have otherwise. Still, I’d like to be able to ring that bell.

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Travel Bug

June 10, 2017 at 4:14 pm (Uncategorized)

I’ve been writing this blog since 2006. I was scrolling through old entries the other day and realized how often I write about the hard parts of life in Chronic Town and that I’ve given short shrift to some of the wonderful aspects of my life since I was diagnosed with sarcoidosis thirteen long years ago. One of the consistently good facets of my life has been travel.

Since my diagnosis in 2004, Jay, Andrew, and I have been to Thailand, Iceland, Canada, China, Scotland (twice), Mexico, France, and Costa Rica, as well as to a good number of cities in the U.S. We are preparing for another big trip this summer. We’re heading to the Azores—a group of islands off the coast of Portugal—for a couple of weeks. Later on, we’re planning to explore the Washington coast.

Traveling means so much to my family. Of course, there is the joy of seeing new places. We live in a small city with almost no ethnic diversity. It’s important for us to show Andrew that it’s a big world out there with a lot of different kinds of people. Traveling also breaks us out of ruts and routines. It’s invigorating to take a break from daily life. But I think the most important reason that traveling is essential to my family is that it brings us together. As much as we’d like it to be otherwise, the challenges of living with my chronic illness separates us from one another. I’ve mentioned this before, but I spent roughly six of the last twelve months in the hospital. We tried to have dinner together every night was in there, and Jay spent every minute he wasn’t at work by my side. But it was still an incredibly isolating experience for each of us. When we leave the country, we get to leave all that behind. There are (hopefully) no White Coat visits or hospital rooms waiting for us abroad. There’s just the three of us—together—experiencing a new place.

Some people find it hard to believe that I am able to travel with a chronic illness. The implication is that if I’m really so sick, how is that I’m able to caper all around the world? I don’t travel when I’m in a rough patch. We’ve had to cancel more than one trip because I’ve been flat on my back in a hospital room. I also am exceedingly careful when we’re away not to overdo it too much. I definitely push myself, but I also make sure I take rest days in bed when I need them. For the most part, I’ve been very lucky. I haven’t had a major health breakdown abroad. I came close in China. A combination of food poisoning and air pollution nearly put me over the edge, but I was able to make it home. Since that trip, we’ve opted to stick with trips to more developed countries, so that if I do fall apart, getting quality care will be easier.

There’s always a risk to leaving home. For me, it’s that my health will fail and I’ll have a hard time either making it home or receiving the care I need when away. In a lot of ways it would be easier just to stay home. But I can’t. I need to remind myself that I am not just someone with a chronic illness. I am also a woman who can travel the world.

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Bodies in Motion

June 2, 2017 at 12:29 pm (Uncategorized)

It’s been a great few weeks. I’ve been feeling better and better and therefore able to do more and more. I’ve been using my office space downtown working on my book, which I’m now about halfway done with. I’ve been meeting friends for lunch. Last week, I reintroduced the gym into my life. I’m only able to ride the stationary bike for twenty minutes at a time, but it’s a start. I’ve also returned to the kitchen and am cooking (almost) my fair share of dinners. Tomorrow, I hope to build on this momentum—push myself to work an extra twenty minutes on the book, ride five more minutes on the bike, and make pad Thai for dinner.

And then, it all comes to a screeching halt. Thursday is treatment day. It’s time for my monthly all-day infusion of ivig. I need to get this medication since, probably because of the sarcoidosis, my immunoglobulin levels are dangerously low. So I get this monthly boost not only to fight the sarcoidosis, but also so I don’t catch every bug in the universe. Before the White Coats figured out I had low immunoglobulin, I got pneumonia four times in three months. But as much as my body needs the ivig, it fights getting it. It takes 200 mg. of Benadryl during six hours of infusing to prevent me having an allergic reaction to the infusion. That’s a lot of Benadryl. It leaves me dopy and confused for a couple of days; the treatment knocks me back into bed for at least a few days with flu-like symptoms and a raging headache. I hate treatment days.

For me, one of the most challenging aspects of living with a chronic illness is the lack of momentum. It seems like just when I’m getting into a positive routine, it’s time for another treatment, or the disease flares, or something stalls me in my tracks. I am very much a creature of habit. I see this most clearly when it comes to my writing life and exercise. It takes a lot of willpower for me to get into a routine with both of these. But once I’m on a schedule, I seem to keep rolling along.

I’d like to get better about picking up my routines again as soon as I feel better after a treatment day. I lose precious time getting back into daily life by procrastinating. I don’t think this is unique to me or to chronic illness. A good friend is dealing with aging parents, who are often in crisis. She has no control over when she has to make a trip to help them, when her momentum gets stalled. Life is a process of rebuilding. I know that. But it’s still hard.

What are your strategies for dealing with a loss of momentum? How do you get going again after you’ve been stalled?

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Relearning Health

May 16, 2017 at 2:58 pm (Uncategorized)

I’ve been out of the hospital for a couple of months now. The symptoms that landed me in the hospital have thankfully abated. There’s been a lot less pain and vertigo. I’m able to drive, to write, to be up and about for a few hours each day. It is wonderful. But I’m also finding it incredibly challenging. It’s like I’ve forgotten how to be healthy.

I’ve become very skilled at being sick, what with all the practice over the past thirteen years in Chronic Town. As the sarcoidosis has hopscotched across my body—from lungs to heart to liver to joints to bones to skin to brain—I’ve had to learn to give up aspects of my life that once gave me pleasure and sustained me. Regular exercise, trips to the grocery store, family dinners, writing, cooking meals, TV or movies with Jay. I hunkered down and learned to let go. You can survive with a pared down life, and I got to be pretty good at it.

The past twelve months have been particularly challenging. It’s hard to believe, but I spent fully half of the last year flat on my back in the hospital. I went from having narrowed life to an empty one. But I adjusted, eking out an existence in the hospital. I shuffled around the building with my IV pole for a walk every day. I listened to countless audio books. I made sure to have questions ready when the doctor made his rounds twice a day. When you spend half a life in the hospital, you are, for all intents and purposes, a professional patient.

So what happens when you come home and start to feel better? Turns out, it’s quite an adjustment. I developed patterns and mindsets based on being sick—on letting go and pulling in. Every morning, I was proud that I could shuffle out of bed and make myself breakfast and drink the cup of coffee Jay made for me. Afterward, though, it was time to go back to bed and lie down, plugging in to an audio book or podcast. Then I’d try to get up and about a little after lunch. Maybe I’d try to call my mom, read the newspaper, or send a couple of texts to friends. I couldn’t overdo it, though, because I wanted to be conscious when Andrew got home from school and have a modicum of energy for a quiet evening with my family. Repeat, ad infinitum.

Except it wasn’t infinite. Not only am I now in less pain, I’m finding that I have more energy. But for a little while, I still caught myself habitually shuffling back to bed after breakfast. It’s like I forgot that I could head from the breakfast table to the shower and then to my office to work. I didn’t remember what it was like to have the stamina to meet friends for coffee, to work, to cook dinner for Jay and Andrew, and still have enough left over to read in bed before sleeping.

This being-more-well thing is a balancing act, though. I still don’t have the physical resources to work for a full day. If I overdo it, I’m exhausted and have a resurgence of pain and vertigo. I need to listen closely to my body—something I continue to find challenging, even after so many years of practice.

But practice is what it comes down to. Life changes every day for all of us, and we have to learn to live amidst constant flux. There’s no way through it but to learn it. And that’s what I’m doing these days—learning to flex my muscles and push myself again. I’m like a toddler with wobbly legs. But I’ll get there.

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May 1, 2017 at 1:51 pm (Uncategorized)

For years I’ve been at war with myself. I’ve been fighting sarcoidosis. I’ve envisioned myself in mortal combat for my life. It’s not just me that’s been thinking about warfare. I’ve had doctors talk to me about killing the disease, and friends encourage me to keep fighting. For the 13 long years I’ve been in Chronic Town, I’ve kept at, getting medication dripped into me that promises to be ferocious. Just a few days ago, I got an all-day infusion of Cytoxan—literally “cell killer”— in an attempt to manage yet another flare up of this damn disease.

As the IV dripped into me, my mind wandered. It has a tendency to do this on infusion days because I need horse doses of Benadryl to tolerate the toxins they call medicine. Cell killer. Just whose cells are getting killed? The idea, of course, is both to suppress my immune system that has gone awry and to target fast-growth cells that build the troublesome little balls called granulomae that are the hallmark of sarcoidosis. Usually I stop there. I’m a good patient. I follow doctors’ orders, swallow my pills on schedule, and have never once in nine years missed a chemo appointment. “You’re a fighter,” I’ve had more than one doctor tell me in praise. Part of my self-imposed job description has been not to think too hard about just whose cells my cell killer is obliterating. I’ve kept my head down and fought on.

But lately I’ve been picking my head up and taking a look around me. The nature of autoimmune diseases is problematic, even as a concept. It’s one thing to be invaded by a foreign attacker, say, bacteria, but quite another to have one’s own body turn against itself. How do you treat that? Strip away the clinical language of “suppressing an overactive immune system” or “targeting fast growth cells” and you are left with the idea of going after yourself, a kind of “we had to destroy the village in order to save it” type of thinking.

I’m tired. Being at war against oneself for thirteen years is just plain exhausting. Nine years of chemo is brutal. I’ll admit there are days when I intend to give up, to call it quits on all “treatment” options and let the proverbial chips fall where they may. Sometimes that sounds like the easiest path. But what is easiest is not always best. No, I am looking for something more nuanced than being a quitter. I’m not ready to consign myself yet to a life wholly bedridden or to death. I just want some peace.

How can I find it? I think it starts by changing of how I conceive of the disease. I’ve had enough of the language of warfare when it comes to my body. When I envision every day as a “fight” for normality, for a modicum of health, I’m simply wearing myself down more. I believe language matters. And the little voices in the back of my mind need a new script. No more battling, grinding, struggling, attacking, fighting—or, at least less of it. I’m aiming for way of living with this disease. After all, the disease is of me and in me. It pulses in time with my heart, flows through my veins. Living in a state of civil war for the rest of my life just isn’t possible.

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The Body Eclectic

March 22, 2017 at 9:38 am (Uncategorized)

I’m in a bigger body these days. I gained thirty pounds during my last three months in the hospital and thirty more during the three month hospitalization before that. That’s sixty pounds. Which is a lot, but then I’ve gained and lost dramatic amounts of weight before. What makes these extra pounds—particularly the last thirty—feel so cumbersome is that I gained them so quickly, all while flat on my back in a hospital bed. I didn’t get accustomed to my new body gradually over time, gaining a few pounds here, a few there. It’s as if some evil-eyed fairy godmother waved her warty wand, and voila, I’m fat again. I’m clumsy in my new, stretched out skin. I gauge spaces I might fit into based on mental dimensions that no longer match my physical ones. I’m constantly bumping into things, knocking over things as my brain scrambles to recalibrate. I also catch sight of myself in mirrors and do a double take. I’m not used to my wider face, the swath of flesh under my chin. With a pause, I recognize myself.

Surprisingly—for me—I haven’t fallen into full-bore self-loathing (well, most of the time.) What I feel more acutely is melancholy for what I cannot do with this extra flesh. A few months ago, I was hiking up to seven miles and even summitted Mt. Helena, the 6,500 foot mountain that looms above my little city. I was going to the gym regularly and riding the bike for an hour at a high intensity. I wasn’t svelte by anyone’s standard, but I was more functional. I miss that. I know I’ll get back to it, that what I need to do is start showing up at the gym and getting back on the bike for ten minutes and building up my stamina. I’m not there yet though. Right now I’m still adjusting to being up and around after so many weeks in the hospital.
When I talk about my weight with Jay, he usually says, “Now there’s more of you to love.” Back when I first gained a lot of weight on high doses of prednisone, I used to shrug off what he said and focus on hating myself. I wanted my skinny, athlete’s body back. I saw my new softness as weakness and could only imagine that others felt the same way. That was years ago, before losing one hundred pounds and gaining most of it back. Maybe I started to realize it’s not my fault that I’m heavier. It’s not like I chose a horse dose of prednisone or to spend a cumulative total of years of my life in a hospital bed.

But my new attitude towards my body is more than tolerance. I’m starting to see the steel behind the fat. My body is a survivor. It’s endured countless procedures, the indignities of surgeries, the years of illness and treatments. A defibrillator bulges beneath a gash of scar on my chest. I used to find this ugly. Now I see the beauty and the strength of my body. It’s fought for me, endured for me, carried me for thirteen long years in Chronic Town.

I miss hiking and my skinnier jeans. But I refuse to engage in self-hatred to get back to them. I’ll lose some weight by returning to daily life. I’ll find my way back to the gym. But I’ll do it with love and dignity. I’ll do it in this body and with this body.

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The Other Side of the Bed

March 12, 2017 at 8:34 pm (Uncategorized)

I was back in the hospital two weeks ago, two floors up and one room over from where I’d just spent nearly three months as an inpatient. The walls of this new room were the same deliberately soothing green; the floors were identical faux wood. Even the view of the mountain looming behind the hospital was familiar. Nevertheless everything was different—and shockingly so. I was on the other side of the bed. For once I was not the patient. I was a caregiver.

Like so many life-changing events, this one started off innocuously. To be specific, it started with a small bruise. Andrew accidentally got kicked in the shin during one of his intramural basketball games. The three of us thought nothing of it. Six days later, though, Andrew started having problems walking. His leg swelled, became hot to the touch, and broke out in an angry rash. Jay took him to the walk-in orthopedic clinic. The doctor thought it was probably a bad bone bruise. “Follow the RICE protocol,” he told us. So we dutifully rested, iced, compressed, and elevated the leg. It swelled more overnight, and the rash got even angrier. He spiked a fever. The next day Jay brought him to our pediatrician’s office. I don’t do pediatrician offices anymore—not with my compromised immune system—and anyway I was tired. I was nearly asleep in an early afternoon nap when Jay called. “They’re admitting him,” he said. “They’re what?” I asked, trying to push back my drowsiness and understand what he was saying. “They’re putting him in the hospital.”

I don’t think I’ve ever left the house so quickly. I stumbled into my clothes, remembered to grab my purse, and drove down the hill to the hospital with my hands sweating so fiercely I could barely hang onto the steering wheel. I arrived to find Andrew looking so small in his hospital bed. He’s a big kid, but he was shrunken in on himself. His arms were swathed in warm blankets to try to pop up his lackluster veins for an IV. He wasn’t crying, but I could tell it was taking all of his control not to. “I hate needles,” were the first words he said to me, through trembling lips. Since his hands weren’t accessible, I went to the foot of the bed and hung onto his feet with what I hoped was a reassuring grip. “I’m so sorry,” is all I could think to say. I probably should’ve launched immediately into a pep talk about how everything would be OK, and that yes, it sucked to get an IV but he would manage. I found those words later. But in that moment I just felt so profoundly sorry that he was in that bed, filled with pain. I would have done anything to change places with him. It’s my role to be in hospital beds, not my 13 year old son’s. He’s supposed to be healthy and invincible. But there he was, a little lump on the institutional sheets.

While we waited for the nurses, Jay filled me in on what I had missed. Andrew had a severe case of cellulitis. Somehow—through some small fissure near the bruise though we’d never actually seen a skin break—bacteria had gotten into his lower leg. He needed IV antibiotics, but for how long, the doctor didn’t know. Before they could ascertain the scope of the infection, Andrew would have to get an MRI to make sure the infection hadn’t gotten into the bone. “It’s not fair,” Andrew whispered as Jay went through all of this. “I know. I know,” Jay and I both said. “It’s not fair, but you just have to hang in there.”

A trio of chirpy nurses hustled in. It was time to start the IV. Unfortunately, Andrew inherited my veins. They circled around him, assessing his arms like cuts of meat. “How about here?” one asked, poking at the top of his hand. “Nope,” said another. “I like this one.” They brought in fresh warm blankets. They gently slapped his hands and arms to get the veins to “pop.” They pinched and prodded. It was all to no avail. Andrew’s veins just suck. “OK, we’re going to go for it,” the head nurse told him. Their first attempt was on the top of his right hand. The needle went in; they finagled the IV into place. Blood bubbled up and out. But it was no good. They tried again, this time behind his left elbow. Nope. How about on top of his right hand? No, not there either.

Andrew was stoic through all of this. He traded quips with the nurses, didn’t shed a tear, and even stopped flinching when yet another needle went into him. However, I found the whole ordeal impossible. I’m no stranger to the drama of IVs. The last time I was in the hospital, I “blew” three IVs in an hour. They eventually had to install a picc line (a kind of semi-permanent IV) because of all the problems they were having with me. I didn’t flinch or cry either—when it came to my arms and hands being stabbed with needles. But watching Andrew endure this was unbearable. How can you stand watching someone you love being hurt? I stopped the nurses before they went for Attempt Number Four. “What will be different this time?” I asked, with more hostility than I anticipated. They decided to wait for the MRI nurse to install the IV. “She’s a pro,” they said. I clenched my jaw and held onto Andrew’s foot. “I’m so sorry,” I told him when we were alone. “It’s not your fault, Mom,” he said. I knew that. I was just so damn sorry for him.

The indignities kept coming. The MRI nurse was able to get an IV started (on the first attempt), but Andrew still had to get through the MRI itself. I’ve had literally dozens of these diagnostic tests. It got to the point that I trained myself to be able to think of all the rhythmic clanking and clunking as soothing and was able to fall asleep in “the tube.” But I worried about Andrew. He seemed so small, and the whole medical industrial complex into which he’d fallen so massive. Of course he made it through the MRI, just like he’d make it through the 5 AM blood draws, and being awakened every four hours all night long. When he blew his IV, he made it through getting a picc line placed, even though—unlike me and most patients—he went through the whole process stone cold sober. He also endured bad news. The local radiologist thought Andrew’s bone was infected, so the doctors braced him for a long hospital stay and then weeks of antibiotics. I gnawed my fingernails down to the quick and worried.

Being on the other side of the bed in the hospital was all about managing worry. It’s an entirely different kind of worry than I experienced as a patient. Of course I worried about myself when I was in the hospital bed. I was in blinding pain and nothing the doctors did seemed to help me. And of course I saw the worry that my loved ones felt for me, and I felt bad for inflicting this on them. But it was an entirely different matter to feel the whipsaw force of worry for Andrew. I lay awake in the hospital at 2 AM, stretched out on the pullout “bed” the hospital provided. My sister and my mother slept for weeks next to me in the hospital. I knew it was bad—the “bed” was beyond uncomfortable, the IV pump always took up beeping and blaring in the middle of the night, and the nurses and phlebotomists sauntered in whenever they felt like it, invariably flipping on the harsh fluorescent lights. But I never knew how paralyzing and enervating and all-encompassing the worry could be. I stared out into the not-quite-darkness of the hospital room and tuned my worry like a violin string. How could this be happening? How could this be happening to Andrew?

As quickly as we were pitched into our medical drama, we were pulled out. Our local doctors sent the MRI report to a pediatric infectious disease specialist in Seattle who determined that Andrew’s leg bone was not infected. Since he responded so well to the three days of IV antibiotics, they let him out barely 72 hours after they’d put him in, on a hefty dose of oral antibiotics. I was relieved when we got this good news, but I couldn’t just shut off my worry.

“How did it feel to be in the hospital and not the patient?” Jay asked me the other day. Horrible, terrible, painful, helpless. But I couldn’t access descriptive adjectives. All I could say was, “bad.” Language shrinks in the face of turmoil. For the most part, life is back to normal. Andrew returned to school, and we’ve returned to nagging him to make up all the work he missed. He’s even been back to the gym to play some more basketball. But I feel changed by what he went through. I now have a small sense of what life is like for Jay and Andrew, my parents, my sister, my brothers, my friends for the past 13 years in Chronic Town. To watch someone you love endure pain transcends language. But it is the essence of love—to worry, to watch, to stand by.

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Birthday Candles

February 17, 2017 at 5:58 pm (Uncategorized)

My son turned thirteen on New Year’s Eve. He’d been talking about his birthday for months.  On the big day, not only would he qualify under family rules to sign up for Instagram, but he would finally be a teenager.  He wanted to eat his favorite special meal of homemade nachos piled onto grilled bacon cheeseburgers, which he named “Nacho-average-burger,” (as in “not your average burger).  As in past years, he wanted to stay up as late as he could keep his eyes open.  Maybe he’d have a few friends over, or maybe he’d just binge on playing NBA 2K with his Dad on his Playstation.  We might go to the pool, or a movie.  Whatever happened, it was going to be a great day.

But then I got stuck in the hospital. On his birthday.  His thirteenth birthday.  I was devastated—or as devastated as one can be when you’re getting pumped full of chemo and pain medication.  What were we going to do?  It’s not as though I could ask Andrew to spend his birthday with me in my hospital room, with the blinds closed tight on the window so the light wouldn’t aggravate my headache and vertigo.  I resigned myself to spending the day—his day—on my own.

But the problem was that Andrew’s day was also my day.  I had carried him for nine months, felt him squirming and restless within me.  Thirteen years ago I had labored for 26 hours to bring him into the world.   His birthday felt inextricably bound up with me.

It didn’t help that it felt like he was slipping away from me. Gone were the days of past hospitalization, back when he was a toddler and a young child, who would run into my hospital bed and snuggle so close if felt like we were merging.  Now he came along dutifully for the dinners Jay organized every day for the months I was an inpatient.  Andrew was polite, even kind sometimes.  But distance grows when you’re not bumping elbows in daily life.  The easiness between us felt taut and frayed.

And now I was going to miss his birthday. I berated myself for being a chronically ill mother.  If I could just get out of the damn hospital bed and return home, even for only a day…  But I couldn’t.  Like it or not, I was sick.

Mothers have a way of knowing when you’re in pain. Even through my fog of medication, I could feel the dull throb of it from my son.  And my own mother, who’d been by my side in the hospital for weeks, must have felt my sorrow rising off me in a damp, teary fug.  She came to my rescue—to hell with the seemingly iron-clad boundary between sickness and celebration, between the hospital and family, we would make a birthday where we were, in the sterile hospital room.   She ran out on a bitterly cold day and bought balloons and thirteen presents for Andrew’s thirteenth birthday.  She coordinated with Jay.  They agreed that Andrew would have the day at home with his Dad, but in the evening he’d come to the hospital.  Jay would bring the cake and candles, but we would provide the venue.  She decorated the room, wrapped the presents, and perked me up.  We checked with one of the kind nurses and got permission to light candles despite all the supplemental oxygen on the ward.

When Andrew walked into the room, I could feel his edginess. He expected something routine or perfunctory, perhaps a slice of cake, the usual quite murmuring that characterized our dinner.  He was certainly not prepared for his grandmother and his mother to welcome him into the room with the rallying cry of “Happy Birthday.”  His eyes took in the balloons and came to rest on the mound of presents.  “Wow,” he said, with a distinct glimmer in his eyes.  Jay was softer too, less constrained by having to be the person in charge all the time.

We had a real birthday party in Room 2112 at St. Peter’s Hospital. Champagne isn’t appropriate for thirteen year olds or mothers on pain medication, but my mother had two bottles of sparkling cider for us.  We toasted the birthday boy—rather, birthday young man.  For me everything felt loosened—the fear and loneliness I’d been carrying for weeks, the distance between Andrew and me.

We turned off the lights to let the birthday candles shine in the winter night on the cusp of a New Year. Who knows what Andrew wished for when he blew out his thirteen candles?  All I know is that he was smiling.  In the candlelight he looked both older and younger, part child, part man.  I felt the past turn within me, and caught a fleeting glimpse of the future.  He must have felt my eyes on him, because he looked up and held my gaze for a few seconds.  Then he smiled, and turned his attention to slicing the cake.

It wasn’t ideal by any stretch of the imagination. It was a party in a hospital room.  When it was over, my husband and son left, and my parents soon after.  I stayed, with the nurses and the I.V. dripping into me.  Still, it was a party in a hospital room.  That’s quite a feat.  I will always be grateful to my mother for making it happen.  For the time they were there, we were together.  I got my birthday wish for Andrew and myself.  We were together.

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February 17, 2017 at 5:55 pm (Uncategorized)

I know I’ve been gone for well over a year. I thought a lot about blogging, but life in Chronic Town kept getting in the way.  To mark my return, I was going to write a long, apologetic explanation about why I’ve been absent.  Then I remembered that I’ve done that before (post link to past entries), and the gist of what I said before still holds true.  I’ve been sick, really sick, for long stretches of time.  In fact, I’ve spent roughly six months of the past year—that’s half of my life over the last 12 months—as an inpatient in the local hospital.  Two weeks ago, I was able to come home after 79 days in the hospital. But being chronically ill isn’t the full story of my life.  When I bounced back to health, I was able to paddle the Willamette River, wander around Portland, spend a few weeks being blown away by the beauty of Scotland, and make it to my son’s basketball games.  That’s life in Chronic Town.  There’s no denying that the lows are very low, but there’s also a lot of joy.  I’m glad to be back.

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