My left leg is numb. It’s like someone flooded everything below my knee with Novocain. I’m stumbling on it, and have taken a couple of nasty falls when I can’t maneuver on the stairs.
It’s probably the neurosarcoidosis—that evil presence embedding itself in my brain and on my cranial nerves, causing vertigo, episodes of blindness, shrill ringing in my ears, and pain like none I’ve ever experienced. But what if it’s not? The assortment of immune-suppressants I’ve taken for the past nine years make me much more susceptible to various frightening cancers than the average person. What if some new foe has decided to pay my brain or nerves a visit?
I suppose I should find out if I’ve got some tumor growing in my head. Which means I should probably go see a neurologist, preferably one who’s at least heard of sarcoidosis. This means medical travel—the least exciting and most exhausting form of tourism on Earth. I hoped I could just go see the Sarcoidosis Guru in Ohio. He manages my treatment. But he’s not a neurologist, and he cautioned that if I signed up to get seen by a neurologist at his big teaching hospital, I’d end up becoming a guinea pig for all the fledgling neurologists in training.
I’ve been through that teaching hospital drill before. Having a rare form of a rare disease means that you are an Interesting Case. All the neurologists-in-training (adolescent White Coats) are summoned to gawk at you. Their wise elders think perhaps you’d be a good data point for their next paper or grant application. So they test the hell out of you, especially when you have private insurance.
I can’t go through another round of testing for the sake of testing. I am exhausted from nine years of sickness, treatment, and doctors. For the first few years, I endured the teaching hospital routine. I wasn’t experienced enough in Chronic Town to have learned the key question to ask when the wise elder specialist at the head of a pack of baby White Coats proposes to scan you, shoot you full of dye, hang you upside down, cover you in electrodes, jam needles in your extremities, hook you up to monitors, try to induce seizures, try to induce fatal heart rhythms, give you hand weights to pump while trying to induce fatal heart rhythms, and/or siphon off enough blood to feed a pack of hungry vampires—all of which, in my confused hope they would help cure me, I agreed to. The million dollar question to ask before they run a million dollars’ worth of tests on you is: Will the results of this test change your treatment recommendations? In other words, are you studying me for the sake of studying me? Or will whatever expensive and unpleasant test you are proposing actually help me?
The Sarcoidosis Guru thought a neurologist in Salt Lake City would be the closest and best place for me to get my dead leg evaluated. So in June, I am heading down there, even though I really don’t want to. I’m practicing reciting my million dollar question for when this guy says he needs to perform a test. Even so, I know I won’t leave Salt Lake City without being scanned and poked and probably bled. Some testing is going to be necessary to try to get to the bottom of the numbness in my leg. I know this. But still, the idea of it—donning the stupid, flappy hospital gown, having my blood drawn, hearing the thunk and whine of the machines, reciting my medical history—just makes me more tired than I already am. And I’m pretty darn tired.
I have a couple months to practice, though. Will the results of this test change your treatment recommendations? If the answer is no, I will say politely but firmly: No thanks. I am not a data mine. I am a person.
I can do this, right?
Have any of you had experience being tested for the sake of being tested? How have you dealt with this?
“Spring is like a perhaps hand…”
By e.e. cummings
Last week, Jay held my hand for a while. We didn’t talk much. We just held hands. After being together for seventeen years, we’ve learned that we don’t always need to be manufacturing words to communicate.
Truthfully, even if I’d wanted to summon my inner raconteur—assuming that facet of myself is still in there after 9 years of motherhood and chronic illness—I’d have had problems. A few minutes before Jay arrived at the hospital to visit during my monthly chemo infusion, the nurses gave me a lot of IV Benadryl to help keep my body from reacting to the bag o’ poison that is the protocol for managing my systemic sarcoidosis. My tongue felt like a slab of meat, and my eyelids were heavy.
“I’m sorry, but I’m very drugged,” I told Jay as he pulled a chair up to the recliner I was splayed out on. At least, that’s what I tried to tell him. It probably sounded more like, “Limes are forty, slut tied ham, cheery pug,” given the quizzical look Jay gave me, before murmuring, “Shhh. It’s OK.”
And then he took my hand.
He brought with him the smell of early spring. His hands were cold. They felt wonderful, as they covered mine. Even though Jay is a paper pusher—or keyboard clicker—by profession, his hands feel like a worker’s. He lifts weights, so his palms are ridged with calluses. The skin on the tops of his hands is dried and rough. We maintain a zealous hygiene routine in our house in the land of the immune-compromised. Jay is meticulous about washing his hands, or bathing them in gobs of hand sanitizer when he’s in the car. He’ll do anything to keep me safe, to the point that in the driest and most germ-infested weeks of winter, his skin cracks open and bleeds from all the washing. I nag him to use hand cream. But he’s too busy, he says.
In my Benadryl-induced fugue state, I got lost in his hands. I liked the roughness of his grip. I liked the feel of his tendons stretching to let his fingers weave through mine. I liked the bulk of his wrist bone, the hard edge of his nails. I liked the sense that his hands were bigger and stronger than mine, that they could cover me and protect me.
I couldn’t think or talk, but the Benadryl didn’t knock me out. The three other infusion medications on the day’s roster tend to amp me up. I start to feel sick and agitated from the chemo long before the bag is done draining into me. The Benadryl prevents my throat from closing in an allergic reaction. But it doesn’t give me the gift of sleeping through the seven, or eight, or sometimes nine hours each of my treatment days requires.
It’s taken some work for Jay and I simply to hold hands, skipping the informational swap-meet that parenting and marriage can become. We’ve both learned that not everything needs to be said, or even can be said. This latter was a particularly hard lesson for two aggressively verbal people. But there is pain, joy, hope, grace, humor, and hopelessness that refuse to be bound by the edges of letters and words. There are moments in Chronic Town—in any town—that dissolve language. Jay stayed and held my hand, even as he could have taken up a dozen “practical” tasks with his. There was a boy to shuttle to a Lego Robotics class, dinner to get on the table, laundry balled up and waiting to be sorted. There is always work to be done.
But holding on to each other through the drip-drip of the Rituxan into my veins, through the fatigue of chronic illness and parenting and stressful jobs, through our fears, are work of their own kind. It is work hands can take up.
Stillness – the ability to just be with another person – doesn’t always feel natural. We’re trained to swoop into a situation and fix it. We’ve got to bat down the thousand “helpful” ideas that bombard the stillness. Ask the nurses why she’s not asleep. Is she going to react to the chemo? Send a work text about a crisis at the office. Tell her to relax, that it’s OK. Ask if she wants a pillow. Or a cup of water. Does she want her ipod? I bet some music would take her mind off this problem. These are things Jay did not say to me. Instead we held onto each other. And it was good.
Staying with me—in that place beyond words—meant that Jay was truly with me. When someone executes a to-do list about and around you, it can feel lonely. I did not feel lonely, as Jay twined his fingers with mine and watched the medicine drip. I was held.
His hand in mind, his steady grip during some of my most-difficult hours, was a gift beyond measure. He showed up to my crappy day, and stayed there. He held my hand.
“I love you, Jay,” I said later.
“I’m a honey-dew day,” he probably heard, as my useless tongue made nonsense Benadryl words.
“Shhh, I love you,” he said. And I could feel his pulse, constant and warm, flow from his wrist to my mine.
Have you ever been in a place beyond words, when you really needed someone just to hold your hand and be with you?
It’s been a difficult several weeks since I’ve written.
Andrew and I both got pneumonia. He had to miss 3 weeks of school. Because of my compromised immune system, my doctor recommended I keep away from Andrew when he was sick. “You can’t catch this,” he told me. So I moved out of my normal place in my family and into the guest room. I could hear Andrew coughing, and sometimes crying. I could hear Jay working furiously at the kitchen table, trying to juggle contentious conference calls with Andrew’s needs. I stayed away, even though I desperately wanted to be a Mom to my sick boy and a wife to my frenetic husband.
I stayed away, and still I caught the bug. Once I had pneumonia, I understood a little better while Andrew cried from time to time. Everything hurt. Turning over in bed felt like too much work, and I could not stop wheezing or coughing. I didn’t want to go into the hospital, and was willing to do whatever it took to stay out. I went through two rounds of daily IV antibiotics. I slept for 16, 17, even 18 hours a day. My oxygen levels still dropped. “If you go any lower, we’re going to have to hospitalize you,” the doctor said. I hovered at the border line for a week and then, miraculously, the numbers rose.
My body responds to any drama, whether it’s a badly sprained ankle or pneumonia, by ramping up its warped immune reaction that is sarcoidosis. So while I shook with fevers and coughed until I tore cartilage between my ribs, I also got to enjoy more of the vertigo, blinding headaches, and episodes of blindness that are the symptoms of neurosarcoidosis. I also developed a new problem. My left leg, which had before tingled and felt “asleep” from peripheral neuropathy caused by the sarcoidosis, now went completely and totally dead. When I was able to get out of bed, I frequently tripped and fell while trying to navigate on a foot with no feeling.
It was a dark time. I was alone most of the time. Jay got caught up in work crises. I usually didn’t feel up to talking to anyone. This meant I spent a lot of time in my own head, which was not the best place for me to be. At times, I was sure the darkness would swallow me.
Once I began to recover from the pneumonia, I knew what I needed to do—regain my stamina, one small step at a time. That was hard to do, though, because I kept getting knocked down again. I caught a pair of violent stomach bugs from Andrew and then, just when it seemed that spring was coming and would chase the darkness away, I got a serious sinus infection that nearly landed me in the hospital again.
I was ready to stop trying. I was so tired. How many times can you rebuild your life? How many times in the past nine years in Chronic Town have I had to pull myself back together after being torn apart by disease? Why not edge a little closer to the darkness that shimmered, always, on the periphery of my spotty sight?
I was pulled back from the precipice. There are many people who love me, and they would not let me withdraw. Andrew tugged at me. He pushed himself into the darkest corners and demanded that I show up for my life—with him and with Jay. My Mom called nearly every day, and kept calling until I picked up the phone and talked. Then she and my Dad came for a visit to help out when Jay had to travel for work. They cooked and cleaned, cheered me up, and helped Andrew through this time of sickness. My friends Martha and Molly called or emailed all the time. “We are here for you,” was the undercurrent of their messages. Barb and Danna delivered hot meals. When you are sick and tired, not having to worry about dinner is such a gift. Jay’s Dad kept me in audio books, continuing to give me free reign of his Audible account, so that on days and long night when the vertigo was at its worst, I could lose myself in the world of a book. Jay’s Mom arranged for restaurant meals, as did Jay’s Aunt Barbara. Jay’s step Dad, Don, found a neurologist for me to see in Salt Lake City, so that I can have my leg checked out by someone with knowledge of sarcoidosis. My dear friend Amy sent me a card just about every day, along with gifts she made. And Jay kept everything running and functional, so that Andrew got home from school, had a warm meal, and got to bed on time. He listened to me when I felt like talking, and held me when I couldn’t.
These many acts of kindness and love lightened the darkness. They penetrated the total blackness that surrounded me. Every call, meal, card, hug tore a hole in the carapace of hopelessness and sadness that might have suffocated me. Thank you for helping me see the light in the night sky. Thank you for showing me the stars.
This is Jay, Rebecca’s husband. Rebecca really misses you, her blog community. Unfortunately, she’s now beginning her fourth week with a pernicious case of pneumonia, one that has so far refused to succumb to two separate courses of IV antibiotics, a prednisone bump, two different inhalers, and frankly I’ve lost track of what-all else. She has managed to stay out of the hospital, for which we are all grateful. But she continues to feel so lousy that she can barely get up, let alone write. She’s a fighter, though, and looks forward to getting back to blogging as soon as she can. Please keep her in your thoughts.
I made a poor choice a few weeks ago. “I’m so tired and sick, and there’s so much to do,” I told myself, “I’ll just wait until I’m feeling better before I write my next blog entry.” That was two rounds of chemotherapy, one sarcoidosis flare-up, four solid weeks of antibiotics, the holidays, and many days of solo-parenting while Jay travels for work ago. Waiting for the right time to do anything is the perfect solution for staying exactly where you are. I should know because I’ve done it a lot.
I take up writing this evening still exhausted, still sick with the world’s most pernicious sinus infection, and still having trouble typing because my hands are swollen from the sarcoidosis. I am on the third day of a week’s course of daily doses of IV antibiotics. I’ve moved into the guest bedroom in the basement because 9-year old Andrew is sick with yet another form of The Crud, and he’s probably already passed it onto Jay. My doctor told me on Friday that I need to avoid “further exposure” to any other bugs while I’m on these ass-kicking IV antibiotics. Easier said than done when one has a compromised immune system and lives with a walking—and hacking—petri dish. One might be tempted t say, “Oh the hell with this,” and go lick the slides at McDonald’s Play Land—just to get it over with. But instead, one finds herself lurking in her own guest room, washing her hands like Lady Macbeth, and going a little overboard with antibacterial wipe usage—not to mention formal pronoun choices.
It’s the New Year, which in the past has meant ritually pledging to do everything from losing weight to writing a book to making my bed every day to stopping swearing. Not this year. I am too tired, too sick, and too worried about the next acute illness landing on top of the chronic sickness. My enforced quarantine in my own home and my overall siege mentality have helped me appreciate the life I have. I want to live it. It’s so easy to wait for things to get better, for things to go back the way they should be, or the way they used to be. But what if by waiting for better times to roll in, we let the ground we still have wash away?
I am writing tonight, even though I’m not feeling up to writing. I called a friend this evening, even though I didn’t quite want to chat. I am staying in the guest room for another night because I want to beat this infection and not catch another one. I am practicing what I preach—or, at least trying to—and living the life I have.
Recently, I’ve had friends pass along links to new blogs by others living with chronic illness. Reading these has prompted me to think about my writing here and why I do it. In some ways, Chronic Town is a personal story. For the past seven years, I’ve shared the details of my very specific journey. As a new mother, I became ill with a strange-sounding and serious auto-immune disease. I’ve grown up, and I’ve grown into a new life with the unique responsibilities and challenges that parenting and illness brought me. I’ve written vignettes about Andrew in his toddler years, meditations on chronic pain, and tirades at losing so much of myself to sickness. I’ve written about my family, my feelings, my disease, my treatments.
As years passed, and my archives have grown past 275 essays, though, I hope that I’ve transcended the specifics and contributed to a bigger—more universal—story. We all live in a state of siege. There’s always some invisible threat to our plans looming just past our control. We all live with exhaustion, in bodies that don’t always obey our wishes, in lives we didn’t necessarily construct. But we live. There is such joy, such hope, such beauty—even on those days we don’t feel quite up to it, even when we’d rather wait to feel better. I hope all these essays go past a macho (or masochistic) recitation of all the hard-ass things I endure and the implicit claim that in enduring them I am somehow more special.
Because I am not special. Chronic illness doesn’t make me special. Or tough. As I hopefully embark on the next 275 essays and seven more years of writing on this blog, I think it’s important to make this clear. If chronic illness taught me one thing, it is this: we all live in Chronic Town. I don’t mean that we’re all sick, but that we all live on a ledge between life and death, that we all live with the constant possibility that everything might change in the next breath, that we all make do with what we have here and now. This is terrible. This is wonderful. This is what we have.
May this year be healthy and happy for you. I hope 2013 brings you all peace and adventure, new opportunities and stability, and as much love as your hearts can hold (and then a little more). May we all have the courage to live the days we have right now before us. Happy New Year.
Welcome to the first ever guest writer at Chronic Town. I’ve been wanting to open up this blog to new voices and new perspectives for a while. Fortunately, Cameron Von St. James got in touch with me and sent this moving piece about gratitude and learning to accept help after his wife was diagnosed with cancer. It’s the first time we’ve ever had the perspective of a care-giver here in Chronic Town. So, please, give Cameron and big welcome.
As the holiday season began this year, it was a moment of reflection for my family. I go back to that time seven years ago in August 2005 when we celebrated the birth of our one and only child, Lily. She was a beautiful baby who gave us so much happiness and hope for the future, particularly for the holidays. As we moved on to planning family dinners and presents, we were suddenly crushed when my wife was diagnosed with cancer.
Lily was just three months old when Heather was diagnosed with pleural malignant mesothelioma. The words are enough to make your head spin, and believe me, my head spun in so many directions when I first realized what this meant for my family. Suddenly all the hope in the world turned to doubt, anger, and fear. Why was this happening to my family? I did my best to stay positive, but all I could picture was the worst-case scenario – me a widower, and Lily growing up without ever knowing her mother. I felt that I had nothing to be thankful for that year.
We did continue to celebrate the holidays as much as we could. We had a Thanksgiving dinner together. Heather’s family flew in to celebrate Thanksgiving and Christmas that year before Heather would go for treatment in Boston. It was difficult to explain everything to them, and this was a conversation that I had been dreading as well. While explaining mesothelioma was hard enough, we had financial burdens looming over our heads at a time when medical expenses only seemed to be growing more out of control. The medical bills were piling up, and while we were both working full time, we knew that Heather would not be able to work after starting treatment, which would really put us behind. It was one of the worst moments of my life, but after Thanksgiving dinner, we sat down with Heather’s parents and discussed everything, from financial assets that we could liquidate to what Heather’s parents could help us pay for. I was mortified and embarrassed, and it would be years before I could look back on that day with anything but shame.
Now, however, I can see how mistaken I was to view it that way. I realize now how blessed we were in that time. We had a family who dropped everything they had going in an instant to be by our sides, who were willing to make huge sacrifices for us during our time of need. Thanks in large part to their help, we were able to make it through. Heather was able to beat mesothelioma, despite the odds, and we’ve enjoyed seven wonderful Christmases together with Lily, and look forward to many more to come. So this Christmas, we want to give thanks to those who helped us and also provide hope for those who are going through similar experiences. May you experience the same joy that we have together seven years later.
Cameron Von St. James is the husband of mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36. A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease. They hope that by sharing their story, they can bring hope and inspiration to people with all forms of cancer.
Andrew recently got us to watch The Avengers family of movies (The Avengers, Iron Man and Iron Man 2, Thor, Captain America – haven’t gotten around to The Hulk yet). I’m not much of an action movie fan, so I was quite surprised at how good they were. Given that the movie writers had some serious constraints on them—including characters already established in the earlier comic books—I was impressed by the inventiveness of the movies. Still, even though the films brought me into their imaginative world, the Mother within me could not help but notice all the property damage left in the wake of each movie. Sure, the Avengers saved the world, but they left Manhattan in rubble. Who is going to clean up that mess?
All those toppling towers and torn-up streets are meant to show us the scope of the threat the superheroes faced. It takes one hell of a villain (and a fleet of CGI wizards) to level an American city. It seems logical that every fight leaves behind some collateral damage. A fight as profound as one that ends up saving the Earth from alien invaders should warrant a mighty mess, right?
Andrew especially loved the scene in The Avengers in which Captain America instructs The Hulk to “smash.” And indeed he does. The big green guy scales skyscrapers in a few steps, hollowing out buildings with each of his feet. As I watched the images of glass showering to the pavement below, rebar sailing like new snow, and mobs of generic extras fleeing the battleground that was once their everyday lives, I realized that I’ve been experiencing my own kind of collateral damage lately.
My sarcoidosis is on the march once more—back again in my joints. My hands are swollen and twisted, making typing this post difficult. Along with these rheumatic problems, I’m having more neurological problems too—more vertigo, more blind spells, more headaches. I’m so tired I feel like I’ve got a gamma-ray infused mutant crushing the life out of me. I’ve been around this track enough times to know that I will eventually improve enough to forget how lousy I feel when the disease is flaring up…and then start the whole process again.
In my body the sarcoidosis is the Digitari— the giant, insect-like marauders that are aiming to conquer the Avengers’ world, and are quite happy to destroy it in the process. My life is rubble left behind after a big-ass sarcoidosis flare-up. No matter how well I manage my calendar, or how much I try to live a normal life, giant pieces of what is important to me fall away from me when I need 16 hours of sleep a night, when cooking a family dinner wears me out for two days, when looking at words makes me seasick. Fighting sarcoidosis strips me down to the essential elements of living. The rest is collateral damage. What gets wrecked is meaningful time with Andrew and Jay, my writing, my time with friends.
Living with a chronic illness means inhabiting a battlefield. My own body is the terrain upon which I fight for ownership of my life. I don’t have a clean-up crew to arrive after the war is waged. I’ll take the best cover I can find and go from there.
Have you ever experienced collateral damage in your own life?
I recently changed my profile picture on Facebook. After a couple of years of using pictures of beautiful landscapes or of me literally hiding behind my son, Andrew—and one unmemorable attempted arty shot of my foot in a field of wildflowers—I decided it was time to put my face with my name.
The problem was that I didn’t like any of pictures of my current face. Nearly nine years on sometimes staggering doses of prednisone have left me with the bloated “moon face” characteristic of corticosteroid use. All the weight I’ve gained (partly because of the prednisone, partly because I’ve been bedridden too often, and partly because I used food to soothe my anxieties about my strange new life in Chronic Town) hasn’t helped in my quest for definable cheekbones.
But I’m also trying to live the life I have now in the body I have now, and cringing from my own round visage was doing nothing but ramp up my cognitive dissonance. Saying that I accept myself as I am now, and then cringing from any photograph taken after 2004 was beginning to feel hypocritical. Plus, what kind of message was I sending to my soon-to-be nine-year old son? Unless they look like Uma Thurman, women should shun the camera?
So I scrolled through the few dozen photos of me I’ve actually allowed my husband, Jay, to take in nearly a decade. There weren’t many to choose from, but I found one. Before I could think about it too long, I slapped it up on Facebook as my profile picture. And because I am lucky enough to have the kind of friends I have, several people wrote to say how much they liked the picture. Funny what happens when you show your face.
Mine is the face of a woman with a young child, the face of woman who gets chemotherapy every month. Mine is the face of a writer, a wife, a sister, a daughter, a friend. Mine is the face of a woman with sarcoidosis. I don’t want to hide from it any longer. My face shows my strength, my kindness, my life.
I am not giving up my attempts to lose weight, nor my constant effort to chip away at my daily prednisone dose (without setting off a disease flare-up). But how can I move forward if I don’t accept where I am now?
I don’t think I’m the only woman in the world who hides from the real beauty of her own face. I’ve heard of women using decades-old photographs on Internet dating sites. I’ve heard friends say the nastiest things about their own faces. I’ve been in houses where the mother’s presence is like an invisible ghost. Everywhere there are photos of her children and her husband, but not one of her. She has cut herself out of her own life story.
We live in a culture that bombards us with images of young, beautiful, and thin faces. Flip through any women-oriented magazine and you’ll get saturated with ads that promise to take away your wrinkles, your fat, your dark circles.
I still sometimes pass a mirror and come to a lurching stop. Who is that strange woman in the mirror? Certainly not the person I expect to see. But instead of scurrying off, with my head bowed, I am stopping and taking a long look at the face looking back at me.
I don’t want to participate anymore in erasing my face from the universe. I am here now.
What does your face show? How do you feel about pictures of you?
We raked up the rest of the leaves this weekend. We ended up with seven huge garbage bags of golden, russet, and red leaves. The trees are down to their bare branches now. We also shuffled out to the trash the skeletons of my tomato and pepper plants. The soil left in the pots is desiccated. And today, I finally began to deal with the remnants of my first ever flowers—two giant planters of marigold and dianthus, which I chose with my mother because they were deer resistant and promised to be hardy.
When I bought the two dozen small cartons of flowers, I quizzed the nursery owner about how to take care of them. As a novice gardener, I was anxious to do everything I could to keep these pink and orange plants alive and well.
“I usually kill plants,” I told him. “But I’m trying to do better. Last year I kept a bunch of tomato plants alive, so now I want to grow something beautiful. But I don’t know how to do flowers.”
“Doing flowers isn’t too hard,” the weathered man told me, with a smile just on the other side of sly. “Providing you water them, give them access to sunshine, and deadhead them.”
“Deadhead them?” I asked, feeling instantly overwhelmed. I conjured the image of some complex and toxic fertilizer, branded Deadhead (maybe it would have a nice, humanistic tie-dyed label). I would need some serious gloves and protective eyewear and, and and …and maybe I wasn’t quite ready for flowers.
“It means you pull of the blossoms when they’re dead, young lady,” he said.
The “young lady” bone he’d tossed me on a day when I was feeling every one of my forty years helped me get over feeling stupid.
“Oh,” I said. “And how do I know when the blossoms are dead?”
“You’ll know,” he said. “And if you’re careful to deadhead them regularly, they’ll blossom for you until the snow flies.”
Back home, I followed his directions and planted the dianthus close to one another, around the perimeter of the half barrel. I clustered the marigolds in a tight ball in the center. Since marigolds stink, both to humans and to deer, they should keep our neighborhood herd (of deer) clear of my flowers. The deadheading lesson went to the back of my brain. I didn’t remember it until a few days later, when quite a few of the once-perky pink dianthus sagged, dried up, and looked like miniature dried corn silk. The flower man was right – I did know. I tentatively plucked off a defunct blossom. Then another, and another.
“What are you doing?” Jay asked me later in the week, when he found me hunched over the plants, furiously picking off dead blossoms.
“I’m dead heading,” I said.
“Oh,” Jay said, and snuck in the front door behind me. He claims to still be traumatized by forced childhood weeding. Any time I do anything with a plant, Jay makes himself scarce, in case I decide it’s time to weed ourselves into a frenzy.
Contrary to my early doubts, I loved deadheading. I couldn’t walk by the planter without plucking off the shriveled blossoms. And once I started, I couldn’t stop. The activity tapped into the same OCD behavior I display when I start cleaning a shower, or sorting through the papers on my desk, or scouring the stove. But with deadheading, I was laboring in the service of beauty. And it really worked.
If I consistently cleaned away the used-up blossoms, the plants kept flowering. When we went away on short vacations and the plants were left untended, I’d come home to find fewer new blossoms—and an hour’s worth of curiously satisfying deadheading to get them back on track.
One summer evening, when dusk was first slipping into the sky, I had a moment of clarity. I glanced down at my handful of dead blossoms, and then at the new blossoms that were nearly bursting into bloom. And it hit me. We are not so different from flowering plants. We need to clear away the used-up bits of our lives before we can allow new growth. If we hang onto dead blossoms—in our souls, in our hearts, in our minds—we make it impossible for new ideas, new inspirations, new loves to find us. To put it another way, we have to close a door for another to open, or shed old skins to weave new ones.
All through my years in Chronic Town, I’ve been holding on—desperately—to the “old” me—the woman I was before I became ill. I know why I was holding onto her. I didn’t want to let her go. I wasn’t ready. For years I told myself that if I just kept a firm enough grip on her, I could slide back into that old life when I was well again. I could pick up where I left off. But it doesn’t work that way. I don’t have the same body, soul, mind, or life anymore. Those expectations, past dreams, lost visions have become dead weight. They’ve prevented me from moving on, and moving into the new person I am becoming every day. It’s time to let the new blossoms flower.
Have you ever gone through a process of internal deadheading? Was new growth more possible after you cleared away the old stuff? Or am I wrong? Is it important to keep our old dreams alive too?
My plants all died last week after an early cold snap. A carapace of snow covered the long line of tomato and pepper plants in pots on my back deck. The sub-freezing temperatures also killed my first-ever attempt at flowers. My two big planters of dianthus and marigold hung on bravely for a day, before they too surrendered their green and succumbed to winter.
I feel slightly traumatized. Long-time readers of this blog will find this surprising. I used to think of myself as a sort of anti-gardener. (Check out “When Juniper Attacks,” “Gardening?” and “Feed Me,Seymour!” if you’re interested.) Before sarcoidosis slowed me down, I was a woman in motion. Who would want to sit in the dirt, fussing over dull plants when you could be hiking, skiing, cycling, or traveling? Gardening felt like a more work-intensive version of making your bed. No matter how much effort you put into it, no matter how precise your sheet corners are, you’re still going to mess up the sheets when you sleep it. And the bed, like plants, won’t ever have a conversation with you. I claimed to have a black thumb.
But then last year, Jay brought home a carton of spindly tomato seedlings. One of his co-workers cultivates dozens of tomato varietals, and brings in hundreds of them each spring to share with folks at the office. I left them on the porch for a couple of days. Since I’m not always on the go anymore, I couldn’t get away from the plants. They sat in their box like a question I wasn’t sure I wanted to answer. Their quiet presence out there, on the other side of the door, drew me out to them.
The seedlings had whimsical names that were half-poem, half-pun: Anna Banana Russian, Burning Spear, Garden Peach, Tiny Tim, Sungold. I rolled their names around my mouth, but it was from their smell that I got my first access to their essence. A growing tomato plant does not produce a beautiful scent. It brings a whiff of damp soil, of salt, of bitter lemons. The smell of Dylan Thomas’ “force that through the green fuse drives the flower,” is of a tomato plant.
I knew I wasn’t well enough to dig up my back yard, so I researched growing the tomato plants in pots on my deck. I didn’t know how often to water them, that you are supposed to fertilize them, or that pruning them is essential. I ended up with a dozen twining and surging plants that would have been right at home in The Little Shop of Horrors.
This year, I did a little better. Jay’s generous co-worker brought in pepper plants along with the tomato plants. I got them potted and watered right away. Since I wasn’t wholly clueless, I was less anxious about the plants on my second attempt. I stretched out the time it took to water them. I spent time with them. I caught myself doing nothing more than sitting next to them, inhaling their scent. I felt a little bit like Toad in the Frog and Toad story about Toad’s first garden. He was so excited for his seeds to blossom that he stayed up at night, reading and singing to them. Then he got impatient. While I might not have screamed at my plants, “Now seeds start growing!” I confess to perhaps thinking, “Now plants start producing!”
And they did. It felt like the vines were bare for an eternity, and then suddenly, on a hot July day, tiny tomatoes were popping everywhere. I dragged Jay and Andrew out with me, and they “oohed and aahed” appropriately. They became more excited after my first harvest, when we feasted on handfuls of sweet tomatoes that tasted better than any we’d ever bought. The peppers arrived a couple of weeks later. For most of the summer, the nightshades kept us in vegetables. We had my tomatoes nearly every night with dinner.
I kept my babies alive for the first cold nights of autumn by covering them with every spare blanket and towel we own. I’d race out in the morning to let them be warmed by the diminishing sun. But one morning, I found the blankets frozen to the plants, and the leaves beneath them shriveled and shocked.
I felt like crying. I know that gardening is a reminder of universal life seasons. Everything grows up, thrives, and then wanes. I know that my tomatoes and peppers had a good run. Still, when I look out at the withered remains if my once-mighty friends, melancholy catches in my throat.
I loved my tomatoes for growing, even through my sick days when I was too dizzy to make it out to water them. I loved them for being strong and beautiful. I loved them for giving their fruit to us, and for teaching Andrew their miracle of converting soil, sunshine, and water into tangible sustenance. And I especially love them for teaching me how to sit down and watch them grow.
Do you have a green thumb or a black thumb? What has helped you learned to sit still?