Battling Cancer, Living with ALS

My beloved friend Charlene was recently diagnosed with aggressive breast cancer. A number of years ago she underwent a double mastectomy and a hysterectomy because she had the BRCA gene. These operations are known to radically reduce the chances of developing breast cancer when the BRCA gene is present. Yet Char turned out to be in that tiny percentage for whom such preventive measures didn’t work.

Her friends were all stunned and mad — how could this happen when she had taken all the recommended preventive measures?! Between rounds of chemo she had a birthday, and she felt well enough to host a party. We wore costumes, danced, ate and drank, and toasted her resilience, as well as her continuing enthusiasm for celebration. There were party favors too: temporary tattoos that said FUCK CANCER in bold black letters. They suited everyone’s mood. I affixed mine near my clavicle, very visible with most of the shirts I wear. Char showed me a delicate bracelet she wears that says fuck cancer in Morse Code. She is fully armed and ready to vanquish; if anyone is equipped with the gumption to beat cancer, Char, a rugged outdoorswoman who doesn’t shrink from a challenge, is that person.

Char is one of at least eight people in my circle of friends and acquaintances who have been diagnosed with cancer in the last few years. It isn’t surprising, I suppose, as advancing age brings on the greater likelihood of disease, nevertheless it is always surprising. No! Why? It can’t be! Not her!

I had a dentist appointment a few days after the birthday party. My tattoo, still emblazoned on my chest, had not eroded at all. My dentist, who I love and have written about before, is a gentle, woman, and it suddenly occurred to me that I didn’t want to expose her and her hygienist to the anger radiating from the words on my chest. I scrubbed and scrubbed until they were gone.

This is the language of cancer, the language of war. Stories about people with cancer commonly refer to them as having battled with cancer, having put up a brave fight, having been heroic. The terminology is understandable. Cancer treatments — surgery, chemo, radiation — are notoriously hellish. And they may or may not succeed. The cancer is often depicted as a dark force that the patient is pitted against, and either the patient wins or the cancer does. It’s a zero-sum game.

This is a stark contrast to the language of ALS. The day I was diagnosed I thought the diagnosis was a death sentence. But very quickly, as I came to know the extremely supportive ALS community, I realized that the preferred terminology is not that we are “dying of ALS” but we are “living with ALS.” This is a disease that, so far, cannot be cured. There are treatments that can slow the disease’s progress, but nothing can banish it altogether. As a result, there is no battle to fight, there is only the challenge of finding a way to negotiate the slow walk to death.

To say that I am happy to have ALS is not exactly right, but I am happy that ALS does not entail a battle, the rollercoaster of triumphs and disappointments, the winning and losing, as well as the rage that can accompany such a battle. Rage can be useful in galvanizing strength, but it’s also exhausting and takes a toll. I have wondered how much pressure that language exerts on cancer patients. What if they don’t feel like fighting when everyone is expecting them to display a warrior spirit? I’ve also wondered whether, when a cure for ALS becomes available, if the language of the disease will shift and the battle metaphor will prevail for ALS patients too. I suspect it will.

I have become friends with a man at the infusion center who has ALS and is not only “living with ALS,” but does so in the most admirable way. His name is John Giacomazzi, and he’s a former professional snowboarder in his early forties. You can find YouTube videos of him gliding down snowy slopes with the ease and grace of a dancer then jetting off jumps, turning, twisting, landing and continuing downhill with equanimity. You can see that this is a person who inhabits his body fully, understands the nuances of balance, and is in supreme command of his muscles.

Now John spends his days in a motorized wheelchair he controls with is thumb and forefinger — his pincers, he calls them. The rest of his body is immobile, except for his head, and he speaks without any problem. John and I were both diagnosed around the same time, a little over a year ago, but the disease has affected us both differently. For him it has been very aggressive, robbing him of his most prized skill, that of movement.

The reason I mention John — other than the fact that I have become so fond of him — is because of his remarkable acceptance of his condition. Unable to raise his arms, he needs people to feed and dress him, to turn him over at night and wipe his butt. He has come to accept such indignities, while radiating immense good humor and a sense of well-being. He is open to discussing his condition; he laughs and even cries about it. And he’s curious, interested in knowing about my experience with ALS too. We talk about how unbelievable it still feels, a year out from our diagnoses, to have been stricken by this relatively rare disease. We talk about what it’s like to feel a particular muscle giving up when we never knew it was there in the first place. We talk about our openness to invoking Death with Dignity if and when the time comes. John spends many hours a day in the parking lot of his residence watching the clouds and sky. Everyone there and at the infusion center loves him. He seems to know something the rest of us don’t. I don’t know if he ever felt anger about the disease, but he certainly doesn’t now. He has written a memoir called A Peacock’s Gotta Fly, in which he talks about his career and his diagnosis, and includes a stunning shot of himself high in the air and upside down. His quote from Seneca is particularly relevant: “A life well-lived is a life long enough.” Also striking are his own words: “Do Epic Shit! Go forth and be a force of the awesome!” I have no problem picturing John in his gung-ho snowboarding days. And now, more than anyone I’ve ever met, he is living with full acceptance of negative capability, the state Keats lauded and described as “being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.”

John recently learned from his pulmonologist that his lung capacity is rapidly reaching a low point that would necessitate getting a trach tube to assist with his breathing. This could extend his life, but it might also diminish his quality of life. He’s had a good life, he tells me, he doesn’t mind going. I understand what he means — I feel the same way — but, selfishly, I don’t want to see him go. I haven’t known him long, but our connection is strong. He promises he’ll tell me if he makes the decision to leave.

Char and John are both doing exactly what is necessary for them to be doing right now: Char fighting like hell for a while and John accepting whatever comes in the months ahead. The famous lines from Ecclesiastes 3 come to mind.

“There is a time for everything,
and a season for every activity under the heavens:

a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,

a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.

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Cai Emmons is the author of 5 books of fiction, most recently the novel, SINKING ISLANDS. Two more of her novels will be published in 2022.

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Cai Emmons

Cai Emmons

Cai Emmons is the author of 5 books of fiction, most recently the novel, SINKING ISLANDS. Two more of her novels will be published in 2022.

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