by Jason Good
“Hey Jace! My boy!” he slurred. “I just wanted you to see what your Dad looks like when he’s reaaaaallly fucked up.”
“Oh, okay,” I said. “What’s that stuff all over your face?”
“Bag Balm, Buddy! You wanna try some? Feels good to just smear it around.”
“No, thanks.”
“Suit yourself, sport,” he said and closed his eyes.
I imagine him like that now, only this time, yelling into an iPad and laughing uncontrollably. I head off to bed, happy.
Roadside Distractions
The next morning, Mom and I sit at the breakfast bar in the apartment drinking coffee. “You heard from Dad yet this morning?” I ask.
“Oh yes! He’s been texting me since seven, asking when we were coming today.”
“Does he expect us to be there all day every day?”
“Oh, I don’t know. He probably does. It’s just so boring. You know he doesn’t like being alone. Even when he’s in his den, he talks to the TV like it’s a person.”
“You mean he yells at it?”
“Yes, there’s that. But he also carries on a dialogue sometimes.”
“A dialogue?”
“If he’s watching a show on MSNBC, he’ll talk as if he’s one of the panelists.”
“There’s something very sad and hilarious about that. We should probably head over soon, right?”
“I’m ready when you are.”
On our way out, I rear back and jack Bozo in his fat red nose. He falls, and then pops right up again. Just like depression. Just like cancer. What a dick.
When we arrive in Dad’s room, Mom and I learn why he’d been rushing us. The night before, while floating in his pleasant morphine haze, Dad’s brother, Clement, had copied him on an email thread. Dad had yet to tell his siblings that he’d relapsed and the transplant was off.
“You should read this,” Dad says, turning his laptop around so we could see the screen. “I don’t know if he sent this to me on purpose or not, but it’s not good.”
Paul, Dad’s youngest brother and bone marrow match, wrote:
When it’s said that Mick is scheduled for his transplant, I realize I’m just a pawn in Stanford’s game. I also realize that Mick is the main character in this drama and is compelled by the sovereign instinct to choose life at any cost.
I think, “what about my life?”
Then I think, “my life” isn’t on the line.
None of the above, however, addresses the real question, which is whether or not a bone marrow transplant should even be on the table.
Gayle, as you might imagine, is struggling with it. She’s asked if Jason’s blood’s been tested, if cord blood was collected when his two children were born, if Mick would be willing to go ahead if any of them were involved. Perhaps these are also questions that need to be asked.
I’m confused, furious, and unhinged by my aunt’s dismissiveness. “Is Gayle really suggesting that Dad would ask Paul to donate but not me or Silas or Arlo? Does she think Dad has some list of people who might be eligible donors that he color-coded based on how important each of them is to him, and Paul’s at the bottom?”
Mom and Dad are giving me a long leash. They can tell I need to stretch my legs. “I don’t understand,” I continue. “This is what people do for each other. Aren’t there anonymous donors out there, too? Those people are willing to do it for anyone, but Gayle doesn’t want Paul to do it for his fucking brother? Don’t they understand if it were plausible that the boys or I were matches that we would have been tested? And if, by random chance, we were matches, that I would insist on donating?”
“Of course you would.” Mom is always on my side, even when I’m being a lunatic. “They are both just so backward about all this,” she says. “It’s crazy.” Finding it cathartic, Mom and I take this opportunity to focus our anger on people rather than on a nebulous disease. It feels quite therapeutic.
“I bet there are more emails,” I say, as if researching a crime.
Mom plays along. “You think?”
“Yeah, there have to be. No way did the conversation end there.” I’m eager to dig into the mysterious, possibly scheming, minds of my aunt and uncle. So much so that I lose sight of what’s important: Dad. This is another drama for me to focus on—a fire escape.
Dad calls Clement that afternoon, and he admits to sending the email accidentally. “I guess I’m so used to sending stuff to all of you that I did it out of habit,” he says. “I was thinking you should have been in the loop about all this, anyway. I was praying either Libby or I would be a match. I knew it would be complicated with Paul.”
Paul’s deep mistrust of Western medicine percolated while he waited for Dad’s decision. Agreeing to donate must have been easy for Paul when it seemed so far in the future, but as the dates came into focus, and Stanford called him to schedule preliminary tests, Paul balked.
A few minutes later, Clement forwards Dad another email. This one from Gayle. The three of us read it together.
Libby and Clement,
I am starting this with you because I know Mick and Jody have their hands full right now. I am not on board right now with Paul being a donor. The process has health risks for him and NO ONE is answering the questions we have been asking for months. He has never had a complete physical or any health tests and we do not prescribe to general western medicine practices. You all know this about us and yet no one is acknowledging it.
Paul has spent his life preventing illness by attention to wellness, good diet and exercise. To just assume he would subject himself to this and all the possible side effects and risks is uncaring. We also currently have no health insurance and are reluctant to get involved with a system we don’t like and can’t afford . . .
So unless somebody starts to acknowledge our concern, there could be great disappointment on many levels.
Gayle
I pace Dad’s hospital room, stepping over cords, and weaving my way past various beeping things on wheels. I want to knock them over, just clear the room like fed-up people on TV. “If Paul and Gayle had so many concerns, why didn’t they come to us for answers? I could have told them that Dad’s insurance covers all of the donor’s medical costs.”
“Is that right, Michael?” Mom asks.
Dad looks away. “Yes, I believe it is.”
“So they think you should go ahead and die?” I ask. “And what’s this shit about you assuming he would do this? You asked him and he already agreed! Do they have any idea how hard it was for you to even ask them to get their blood tested? You’re also uncaring? What the fuck is going on?”
Dad is quiet. I figure he’s disappointed or has perhaps given up.
I take a few deep inhales from my e-cig, which calms me a bit. Dad finally provides his thoughts. “Look, the last thing I heard directly from Paul is that he’d do anything to increase the quality and quantity of my life. He and Gayle have every right to express their doubts to whomever they like in any way they like. Unless he tells me himself that he’s not willing to donate, I’m going to assume he still is.”
How is it possible, that among the three of us, Dad is the rational one? He thinks it’s best not to become secretly involved in other people’s business. Even when their business is you. Of course, he’s right, but it’s difficult to find satisfying things to talk about when the private lives of others are off the menu.
Though Dad and I are in a period of confluence, the biological hierarchy of wisdom remains intact. Beyond our understanding, friendship, and camaraderie, he’s still my father. We love Paul and Gayle, and respect how they’ve chosen to live their lives, but we also know it hasn’t always been a choice. Unable to afford health insurance, perhaps they had merely embraced (maybe a bit too tightly) the options within their budget. An outsider might consider all of us brainwashed—Paul and Gayle by the holistic culture, and us by the Western Medicine Industrial Complex. Then again, as astrophysicist Neil deGrasse Tyson says, “The great th
ing about science is that it’s true whether or not you believe in it.”
Because Mom and I are high school girls, we convince Dad to send out a feeler to Paul, like passing him a note in class. We don’t know if he knows that we know how he feels or if he knows that we’ve seen these emails. We would be better off not knowing any of this is going on. I guess this is what happens when people over the age of sixty-five use computers.
Dad emails Paul a short update about his condition. “Had another round of chemo. The strong stuff this time. Tired and bald. Look like G. Gordon Liddy, but feeling better every day.” Paul responds quickly (for him), saying he’s happy that Dad is “on the mend” and that he will send him “a ball cap.”
I imagine Paul is still hoping the transplant won’t happen. Of course, he knows if it doesn’t, Dad will die, and he obviously doesn’t want that. I think he’s stuck in a paradox similar to that of climate change. “What do we have to do to reverse it?” “Really? No, I’m sorry. I can’t do that. I’ll take my chances that something else will solve it.”
I can’t help but imagine Silas and Arlo in a similar situation: one of them terminally ill and in need of a transplant from the other. As much as they fight now over the ownership of swings, trampolines, and random pieces of plastic, I like to think each, when old enough, would agree to help the other without question.
In an effort to understand Paul’s position, I consider how I might react if the situation were reversed—if I were on Paul’s end of what I consider a bizarre, risky, and overzealous treatment. I’m just as afraid of alternative medicine as he is of its Western foil. The mere thought of an enema makes me nauseated and panicked. The few times I’ve taken echinacea, I’m fairly certain it made me sicker. If I get malaria, I’m taking all available pharmaceuticals even if local mythology suggests that the bark of a cinchona tree is equally effective and less toxic.
A cure for Dad’s condition can only come from science, and I am completely committed to it. But I must consider how I might feel if one of my cousins moved to a distant island to join a bizarre cult and sent a letter telling me that he was sick and that my participation in concocting a lifesaving witch’s brew was crucial.
Sad and strange, but how could I not read on?
Down the page, I read that the main ingredient in this potion is the middle toe of a relative, and of all seventeen cousins, only mine will suffice because none of the others has a purple aura.
It’s awkward now, and though I’d likely write back, tentatively agreeing, I would do so only because I like my cousin and hope that more reasonable options might come along between now and the ceremony. Maybe he’ll come to his senses, or his tribe will source a more local toe.
Then, some months later, after I’ve vanquished the thoughts of my toe being used in a stew, I receive a new letter: “Greetings! It was so nice of you to offer your toe. I need it in three weeks. You will have to come here, so our leader can cut it off with a boar’s tooth. I hope that’s not too much trouble.”
Panicked that somehow my bluff of support has been called, I might email the other cousins to see what they think about this plan, whether they know anything about boars, and specifically if their teeth are an effective tool for toe removal. I would pay this request its due diligence. It’s what we do for our families.
This absurd fantasy isn’t even close to being a fair comparison, but it helps me not be angry anymore. I need that more than I need accuracy. To reinforce my commitment to a modern, Western cure for Dad, I have to marginalize the alternatives as best I can, cast them as silly witchcraft.
But there’s another, more appropriate, aspect to this allegory. What if I felt deep in my bones that my cousin was being led astray by his tribe and this toe stew would hurt him rather than help him?
To Paul and Gayle, Western medicine is a corporate-driven enterprise that profits on people’s fear of death, all while ignoring, perhaps even covering up, the easier, safer, lifestyle-based ways to stay healthy. They don’t want Dad becoming a victim of it. Modern medicine can prolong life, but often at great cost and often at the expense of someone’s quality of life. This is what Paul meant when he questioned whether the transplant should be on the table at all. To him, there is quality in a natural death.
“Sure, but he’s not the one dying,” Dad says. “Believe me, it changes your whole perspective. I look at these beautiful little boys and just can’t imagine not doing everything I can to be around to watch them grow up.”
“And you get no similar feeling when looking at a picture of me?” I asked.
Dad smirks. “Nope, not a thing.”
In December, after I had been back in Minneapolis for a few weeks, Dad texts me about a message he received from his social worker, Susan.
Dad
Susan said she saw something on my chart about coordinating a call with Stanford. That has to be good news, right?
Jason
I don’t see how it couldn’t be. Why else would they be calling Stanford unless it was to tell them you were in remission and ready for the transplant?
Dad
That’s exactly what I was thinking.
Yet again, we are jumping the gun and reading too much into too little information. When Stanford calls the next day, it’s not what we expected. Nurse Herbach was thrilled to inform Dad that they’d found two anonymous donors: both perfect matches. After a little prying, they told him that Paul might have some complicating factors rendering him ineligible to donate. Dad didn’t ask for details.
Lacking real information about why Paul was now considered an ineligible donor, we fill the void with more speculation. Mom and I are powerless against the adrenaline-releasing drama of What Might Be Going On. Had Paul made up some condition to get himself off the hook? (That’s what I would have done in his position.) Or had he told them flat out he wouldn’t do it? Had the transplant coordinators at Stanford decided their lives would be easier if they found someone who actually wanted to be part of the Western Medicine Industrial Complex? Perhaps the complicating factor was simply that Paul is too old. But no, if that were true, Stanford would never have bothered testing him in the first place.
For weeks, perhaps a month, we waste our energy on this. Then again, I wonder what else we would have talked about instead. Normally, Dad and I would ponder a question, and Mom would Google the answer before we had any fun with it. “What was that movie Gene Hackman won an Oscar for?”
Thirty seconds later Mom would chirp, “I think you mean The French Connection. But he didn’t win. It says here on IMDB that . . .”
“Great! What the hell are we supposed to talk about now?” Dad would say.
I miss those conversations. Given how little time we have left together, I hate that we spent so much of it wondering what someone else is thinking. All the conjecture about doctor’s opinions, what Paul and Gayle think, and what Paul might decide, is a roadside distraction—a set of cognitive stimuli that only slows us down and takes our eyes off the road. It’s how we cope with our collective helplessness. We can’t solve anything, but feeling like we know stuff gives us peace of mind.
By the middle of December, we hadn’t heard from Paul in nearly a month. For much of that time, he was in New Zealand attending a buskers’ festival. Why is there a buskers’ festival, but more important, how do people afford to travel to New Zealand on a busker’s wages?
Finally, Dad receives an email from Paul that answers all of our questions:
Mick,
I want to apologize for being so out of touch lately. It doesn’t mean I haven’t been thinking of you. It’s quite the contrary actually. While I’ve been involved with my current travels and preparations for them, which have long been in the making, I have not forgotten that your life is consumed by your battle . . . and that you’ve entrusted yourself to the people at Stanford.
My communications with them began almost five months ago when I sent a letter to the hospital that I expect got lost in the shuffle. At any
rate, I didn’t get a reply. I later included the text of that letter in my first of several emails to Nurse Veronica Herbach. She had called me, as you said she would, to see if I had any questions. I told her I had a lot of questions and we agreed that email was an acceptable way to communicate.
Eventually, she arranged a phone call for me with Doctor Kutsami just before Christmas. Doctor Kutsami had read my previous communications with Nurse Herbach. I told her how my initial questions were about the procedure—how long would it take, how much of the drug would I get, what are the possible side effects and complications, what about my lack of health insurance—but since I had done some fairly extensive research of my own, with help from the Internet and several knowledgeable friends, my questions were about what other more viable and better options might be available to you.
I have felt from the very beginning that the age factor is significant. I know there are successful outcomes for patients even older than you are and that’s encouraging. Nonetheless, we are both at added risk because of our age. As my conversation with Doctor Kutsami unfolded, we talked openly about the age issue. Here is some of what she said . . .
“Historically, the age limit for donors was 50, but we’ve since moved forward from that . . . Older siblings, however, show a higher risk of co-morbidities and just because you’re a match it doesn’t make you a donor. . . . It’s not uncommon for a physician/advocate to decide, for a wide variety of reasons, that it’s not appropriate for a matching sibling to be a donor. . . . Nurse Herbach has already started an unrelated donor search. If a good donor is found in the database, it will be nearly as good. . . . We will aggressively pursue our search for another and much younger donor.”
Since that conversation, I’ve been in a kind of Limbo, waiting and hoping to hear some positive news from Stanford, and wondering what they might be telling you (hence my sad lack of communication). It was apparent that their MD had serious reservations about my being a donor. I can’t say I wasn’t relieved by the thought of being spared the procedure but it didn’t come without a sinking feeling of letting you down.
