Rhododendron bushes frame our little family group in a series of photographs: my mother, brother, sister-in-law, their baby, my boyfriend, and me. The bushes are filled with full, lush blossoms of red and white; glossy, deep blue-green leaves form a backdrop for those constellations of blooms.
Before taking photographs in front of the rhododendrons, the five of us, plus the baby in a backpack, had spent hours walking the length of Golden Gate Park, from the Haight down to the sea, a long stroll in the cool sun of late spring in San Francisco. Moments after taking those pictures, the fog rolled in, blanketing us in cool wet. We huddled together, chilled, but invigorated.
It was the end of May 1991. The world swirled around our family. The collapse of the Soviet Union was underway; apartheid was being dismantled; an oil spill in Kuwait was continuously burning. The combat phase of the first Gulf War began and ended that year. A footnote to that short, brutal campaign: a number of Gulf War veterans were struck by amyotrophic lateral sclerosis (ALS) in their twenties and thirties, and at twice the rate of the general population.
We didn’t know about those sick veterans as we were taking that walk across Golden Gate Park, a walk we were taking to mark the one-year anniversary of my father’s death from ALS. My father was not in the military, and we knew little about the disease that had forever altered our family.
***
Constellation, as per the OED, is the configuration or position of ‘stars’ (i.e., planets) in regard to one another.[1] Constellation as a medical term is most often used to refer to a set of ideas, conditions, symptoms, or traits that cluster together, or result from a single condition or illness. Synonyms for constellation include array, assemblage, batch, clump, cluster, collection, group, huddle, knot.
The median age for ALS onset is 50. Death for ALS patients is typically two to four years after diagnosis, Stephen Hawking notwithstanding, as variations of the disease develop at differing rates.
In motor neuron diseases such as ALS, the constellation of symptoms includes (but is not limited to) exhaustion, muscle weakness, dystrophy, wasting, paralysis, respiratory failure. For most, it begins almost imperceptibly, manifested by a trip of the foot, a catch in the throat. A feeling of fatigue. Barely noticeable.
There are predictable patterns in these constellations. There is foot drop. The foot begins to point downward as the musculature holding the alignment of the foot stops working. There are braces to hold the foot in alignment, to make walking possible with support, assuming surrounding musculature is operational. Or there is upper body weakness that makes gripping or lifting objects difficult. A loss of control with fine motor skills, such as writing.
There is neck droop. As the muscles of the neck are no longer able to support the head, a brace is often used. The patient may still face downward, however, as the animating force of muscle and tissue that keep the head, the neck, the face working continues to weaken. It is with this aggregation of muscle decline that the motions for talking, chewing, swallowing, and, finally, breathing begin to fail. One early sign is slurred or indistinct speech.
My father was a singer. Just a month or so before he died, he told me that he’d first noticed his voice diminishing over two years before his diagnosis. The muscles of his diaphragm became less supportive of deep, controlled inhalation. Long notes, and notes in his upper and lower registers were difficult to hold. His throat seemed to clutch. For a long time, he said nothing, attributed it to aging, though he was in his fifties, and healthy. He began to turn down jobs and even declined to sing at a nephew’s wedding. At that wedding, a woman sang “Ave Maria,” and as she did, I looked over to see my father mouthing the words along with her.
***
A little-used form of the word bloom is as a noun denoting “a full bright sound, especially in a musical recording: ‘the remastering has lost some of the bloom of the strings.’”
A doctor once gave me a metaphor: motor neuron disease acts on muscles like a knife on a rope, he said. Neurons fail to send signals from the spine. Cut off, the muscles are useless; wasting and paralysis ensue. This metaphor never felt useful to my understanding. What is the knife, exactly? What is the rope holding?
The metaphor that makes sense to me, though perhaps oblique and less direct, is the way a flowering plant loses its blooms when diseased. On my camellia bush, blossoms bud, open, and flower. The blooms are a creamy white and attain perfection briefly before turning brown and falling off the bush at a precipitous rate. What I’ve learned is that this early browning and drop indicate a fungal infection. Fallen blooms must be raked frequently to avoid rot and disease spread; in some cases, the roots become infected and the plant can wither and die from the inside out. This “flower blight,” as it is called, might be combatted through the use of fungicides, which I will not use.
Two years before he was diagnosed, my father developed a limp, which he chalked up to a bad bunion and the bunion surgery that followed. Then, while visiting me in Mexico, he fell from the moped he’d been riding at the beach; his balance was off, he said. Forget the moped, I said, and we went swimming in the stunning glass blue of the Caribbean. The clarity of the water was a novelty for us, used to the dark blue Pacific of California and the deep mountain lakes with fathomless bottoms. We were used to sensing the fish around us, feeling them under our feet, but it was strange to see them wind through our legs. The Caribbean was so warm and so enchanting that it was difficult to leave. Only when a small but aggressive-looking shark came around did we exit, but my father went back in moments later, exulting in his weightlessness in that blue. Only in the ocean did he feel free of what I now understand to be the encumbrance of his body. Only in retrospect can I see the signs of flourishing disease.
About six months after the moped fall, my brother was married. My father sang “Whither Thou Goest” at the start of the mass, and his baritone sounded beautiful, if slightly less full-voiced than usual.
A photo from that day: my father and I are dancing, our cheeks pressed together. I’m wearing a flower-covered lavender bridesmaid’s dress; Dad is handsome in a dark tux with his dark skin and light green eyes highlighted against his white shirt. He’s biting down on his lower lip, and since I remember this moment vividly, I know it is because he is struggling to keep his balance as we circle the floor. He believed that this was related to a groin pull incurred in the moped accident. He’d held my hand tightly as well, but I interpreted that as his overwhelming happiness that day.
***
A cluster is a group of similar things or people positioned or occurring closely together.
The way a rhododendron blooms is deceptive: what appears to be a big, blowsy flower is a constellation of tiny blossoms making a single, large, round cluster of color. I’ve had a bush in my front yard, have hiked through entire mountainsides of rhododendrons but only recently examined how those flowers form and present themselves.
In the CDC’s epidemiological guidelines, “the term ‘cluster’ is an unusual aggregation, real or perceived, of health events that are grouped together in time and space and that are reported to a health agency.” [2] Epidemiological investigation of clusters can lead to medical breakthroughs. Notably, in 1981, a small cluster of Pneumocystis carinii pneumonia cases were found in gay men in Los Angeles, and what followed that documentation led to the identification of HIV/AIDS.
In other cases, clusters aren’t definitive or useful, particularly in diseases that are not communicable or widespread. Groupings of disease can be present, but making direct and confirmed connections to cause is rare and difficult. Nonetheless, the Dept of Veterans Affairs testified that Gulf War Veterans were much more likely to be afflicted by amyotrophic lateral sclerosis (ALS) than the general population.[3] Epidemiologists don’t make conclusions unless data is definitive, but what’s clear is that ALS struck a number of these vets atypically and quickly. Yet the pathogenesis of this and other ALS clusters, such as in the Chamorro people of Guam, has been difficult to determine, though theories abound.
ALS onset (and that of other motor neuron diseases) is likely precipitated by exposure to toxins, particularly neurotoxins, combined with a genetic predisposition. In the case of military personnel, possible toxins include biological agents used in warfare. Or, in the case of the Gulf Wars, maybe poisons released in oil fires that bloomed in the desert sands. A number of soldiers in the Gulf wore flea collars around wrists and ankles—actual flea collars used for cats and dogs—to combat the pernicious sand fleas in the desert. These contain neurotoxins like those found in home flea treatments or those sprayed on flowers and plants in public places or residences. There are also pesticides and herbicides and fungicides and fertilizers used to saturate farmlands, chemicals that run off into public water systems. Many of these have neurotoxic capacity. These chemicals can be found in waterways and also drainage systems that are serviced and maintained by public employees, such as surveyors for the city of Los Angeles, surveyors such as my father. Yet my father’s work in the water systems of Los Angeles preceded his illness by nearly two decades.
Not all exposure to neurotoxins leads to a motor neuron disease. While a case of ALS may be linked to genetic predisposition, combined with this exposure, this is distinct from a hereditary variant of ALS, which is only responsible for 5-10% of all cases. My father had a slice of muscle removed from his thigh for biopsy and analysis to identify this traceable variant. Thankfully, it was negative.
***
When they are not flowering, rhododendron and camellia bushes have some similarities. Both have fairly large, glossy, darkish green leaves. Blooming, both have full flowers with overlapping petals. Both are of the same taxonomic rank: Ericales. I have both in my front yard, next to one another. The leaves mingle. Rhododendrons naturally contain toxins called grayanotoxins, which act as a natural pesticide. Ingestion of rhododendrons can cause illness in humans and animals, and can be fatal. Camellias are not poisonous; some varieties are even used for tea.
In a photograph taken three years before his death, my father stands in the garden, in a broad-brimmed hat, shovel in hand. He worked in the garden often on the weekends, often taking on the grunt tasks easily: shoveling, mowing, spraying flowers, trimming. He enjoyed being outdoors and liked to muck around in the garden. I find myself doing the same: pruning bushes, clipping herbs, raking leaves. Bouncing from one task to the next, without a plan. To be outdoors and without an agenda feels like a meditation.
Before he knew anything was wrong with his body, my father stopped mowing and shoveling. It tired him, he said. By the time he was diagnosed, which was just a year after my brother’s wedding, his left arm had begun to weaken. In the space of a month it went from muscled and healthy to shriveled. It was this rapid, pronounced wasting that led him to the doctor and to the diagnosis of ALS. By that time, the disease was in full flower, the progression fast, and he was finally able to give in to the exhaustion that had plagued him for the prior two years. He stopped working, stayed home. Weakness that had been localized and minor, spread. His left arm and hand grew useless. Walking became increasingly difficult as foot drop worsened and his legs lost muscle tone. We rearranged rooms and brought in various medical equipment. For a while he used a walker, but as his upper body strength declined, he began using a wheelchair. In just a few months, rising from the bed became a challenge.
***
Bloom: A flower, especially one cultivated for its beauty. Bloom is also a noun to describe rapid algal or cyanobacterial growth in water, a growth that produces a visible scum.
In the great river deltas of our country, from the Sacramento to the Mississippi, fertilizers run downstream from farmland, rain and runoff making chemical rivulets that shiver into bodies of water. The nutrients from fertilizer create the fuel for bacterial blooms, which flourish particularly in warm weather, especially where saltwater meets fresh. The bacteria can spread fast, like weeds after a spring storm. These blooms often become visible, the colors ranging from blue-green to a bright lime green to dun brown. Sometimes they smell. Sometimes they are invisible and odorless.
There are ALS clusters around several lakes in the northeast US, such as in New Hampshire. Japan and France, too, have clusters around certain lakes. Some current scientific thinking is that ALS can likely be triggered by exposure to toxic algal blooms, or cyanobacteria that occur in bodies of water, such as these lakes.[4]
I search for exposures in my father’s past. During summer vacations, we swam in lakes all over California and Oregon and Washington, in Mexico and Canada. A family vacation to Clear Lake, California is one. It was a wonderful week of swimming, boating, fishing in the lake, which, ironically, is not so clear. Scientists estimate that Clear Lake has experienced outbreaks of cyanobacteria for centuries,[5] that is, as a naturally occurring phenomena, often cyclical.
Cyanobacteria can be communicated through direct contact with the source, in the water, or in the ground surrounding, in the fish, in the birds who eat the fish. Is “communicated” the right word? Or perhaps: transmitted, shared, spread, broadcast. In the garden, I broadcast seeds that benefit from dispersal. I spread them on and into the ground with a prayer for growth, bloom. Water and sun and soil and organic matter provide nourishment, but in some contexts, can destroy.
Bodies of water heavily infected with such cyanobacteria are described as eutrophic when the increase of organic nutrients has reduced the dissolved oxygen, producing an environment that favors plant over animal life. Eutrophication leads to widespread suffocation of fauna, even as flora propagates. In the ocean, this can be a red tide, a phenomenon I’ve seen—and smelled—a few times. The etymological root, from the Greek, is Eutrophos, meaning “well-nourished.”
***
Keeping an ALS patient well-fed becomes a challenge as the disease progresses and the muscles involved in the digestive process gradually weaken and then fail. The lips, tongue and jaw gradually become unable to bite and chew. Esophageal muscles can no longer funnel food. Choking becomes a hazard as food gets stuck in the throat on the way down as the musculature fails. Eventually, the only therapeutic resolution to nutrition is a feeding tube.
My father wanted to avoid this. He loved to eat and wanted to continue eating solid foods. So he ate, but less and less. He drank a little wine. Spicy, fibrous foods were out; soft and smooth were in. We catered to his urges and whims. When he asked for ravioli, my best friend and I arranged a dinner for just the three of us: good dishes, wine, candlelight. Though he could only manage tiny bites of the pasta, and sips of red wine, his delight in the evening was immense.
As his dysphagia worsened and incidents of choking became more frequent, we had to watch him closely when eating; he lost weight, of course. Every ALS patient loses weight along with muscle mass. Hunger will lessen by the day as the body slowly, inexorably, disappears.
Respiratory failure is often the cause of an ALS patient’s demise. The muscles that work to provide breathing fail as every muscle of the diaphragm, the chest, stops their work. A tipping point ensues; often a trach tube and/or breathing machine is implemented. My father chose not to have interventions for breathing, and implemented a DNR and medical directive.
There were a number of moments when he felt unable to breathe, whether it was from choking on food or saliva, or simply trying to move air into his lungs. We would calm him, give him transnasal oxygen, tranquilizers, sit him upright.
One early morning in May, nothing worked. I wasn’t there. All I know is that he began to bang the sides of his hospital bed, in panic. An ambulance was not called. My sister-in-law put the baby into my father’s arms, and with my brother and mother, prayed as my father slipped into unconsciousness, and then death.
***
Last year there was a death close to me: early, tragic, shocking. The flowers came to the home of the grieving family in arrangements that ranged in size from medium to massive. Most were artistic, stunning. There were gladioli, chrysanthemums, lilies, roses. Beautiful names for beautiful blooms. I went through the house one day, plucking out dead blossoms, consolidating arrangements, cleaning and counting the vases. At one point, there were at least sixty; walking in the front door that day, the day of the sixty vases, I had the unwelcome and tiresome thought that the house “smelled like a funeral parlor,” words I clenched between my teeth lest they come out. There were sneezing and dripping noses; even the most flower-loving person bowed under the weight of all that scent, all that pollen, all that grief.
When my father died, there were flowers, too. They came to the door, delivered by strangers, carried by friends, these clusters and bunches of blooms. Such offerings say, “I am thinking of you,” and therefore when flowers are brought to me now, I stop myself from throwing them out right away. It is hard for me to look at a floral arrangement without thinking of the possible pesticides or fungicides glazing the petals and leaves. It makes me feel short of breath.
I’ve researched the many chemicals that were commonly used in California during my father’s lifetime and have been making lists of both the chemical names and the names that are used for marketing. Chemicals with floral-sounding, pretty names, mellifluous and sweet to the ear; names that could be perfumes, or flowers: pyrethrin, aldicarb, malathion, parathion.
Another list of beautiful names: cyanobacteria, diatom, dinoflagellate, cylindrospermopsin, anatoxin. Lovely words for poisons.
***
I’ve been considering a flower-knot for a particular patch in my backyard, an organized plan to showcase plants. With colored pencils, I draw a design to show off foliage and flowers, staggering heights, and coordinating colors. Zinnias, which entranced me this year in my neighbor’s garden, are featured. They grow easily into the fall, and contribute stunning color.
Nourishing the soil in this spot confounds me, though. The difficulty is that the plot where I want to put the flowers has never been successful. I’ve grown mint there—mint grows like a weed anywhere—but everything else starts to grow, and then stops, and withers. A landscaper told us that he believed a sumac behind our fence was an allelopathic plant, one that renders the soil inhospitable to competing plant life, not unlike the way the grayanotoxin works as a weed and pest retardant for the rhododendron. What can I do? Each year as spring approaches, I step outside into the yard, into the world, to cultivate the soil, plant the seeds, water and tend this small patch of earth as best I can.
I also wonder what else resides in the ground that I cannot see. When we first moved into this house there was a gas station behind us, not far from that plot where I’ve planned the flower knot, and I imagine in the slight downhill slope from there all manner of known and unknown toxins sliding into the soil, washing downward in the rain, coming up to rest against the sides of my home where my children slept and played and ate and drank. Benzene and toluene and xylene. More beautiful names.
I will never know what killed my father—that is, what initiated the disease deep in his spine, where the cells began their sclerosis. I can only wonder if that same process might begin in my own body, if my own neurons will begin to fail in their communication to the spinal cord, if the muscles will start their atrophy. If some poison will jump-start a response deep inside of me. It is in the not-knowing that I reside.
In one of the photos of that long-ago day in Golden Gate Park, I notice not just a rhododendron in the background but a red hibiscus, just like the bush from my childhood home, blooms that I held once in my hand. We had two bushes side-by-side in our backyard; one bore white blooms, the other, blooms of blood red. Inside, the red pistils pointed up, coated with dusty yellow pollen, culminating in little boluses. Ants crawled inside sometimes, and sometimes a bee or other insect. The center of those flowers held all the makings of next year’s flowers and food for the bugs and the hummingbirds who also visited. When I was a small child, I would lean into those flowers, set my eye inside the blossom glimpsing a whole world inside, miniscule and magnificent.
I was never fearful of those insects, those bees. My father, ambling about the garden, relished everything, as did I: the dandelions, which we plucked for Mr. Turtle, my beloved tortoise; the spiders, which I carefully removed and protected from the dangers of bush trimming or mowing; the cats, always underfoot; and the roly-poly bugs and worms, all good for the soil. The fleas, though, we all hated. One summer when we returned from a family vacation, thousands of fleas had hatched out in the carpet. Hungry for blood, they covered the four of us up to our ankles when we came inside, making our feet appear spotted. My father set to work putting flea-killing foggers throughout our home. First, though, he sent my mother, brother, and me to my aunt’s house for the night. He waved goodbye as we drove off, and then turned around and went back inside.
Adrienne Pilon is a writer and educator. Recent and forthcoming work appears in Tendon, The Linden Review, The Tiger Moth Review, and elsewhere. She currently serves as a poetry reader at Kitchen Table Quarterly. She lives with her family in North Carolina and California.
