Cosmogony II

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the light switch on makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the wonders of belief, the wonders of blood, the white and the red. One day, long before we knew Mark has cancer, something happened–his DNA and his environment meet, pressed, bang!–and, lo, he has leukemia.

Maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still here? How much of me is memory now too?

Home

(was Grounded)

He says, “Home,” and we don’t know what it means. He says it when we are at home. He says it when we are all together, my son, husband, me, sitting on the sofa, around the TV. He says it when his grandparents visit and it confounds them. “Home.” We say, “We are home, honey.” It’s not the answer he wants. “Home.” “Yes, we are staying home,” we say, thinking maybe he doesn’t want to go anywhere. It is a Saturday so no school, no therapy sessions, no sitter. He can’t say those words, so maybe this is efficient shorthand for his desire. We could go shopping, we could go to the park, or to an event for special needs kids, which are almost always on Saturdays mornings, but we don’t because the weeks are jam-packed and maybe we all just need a break from trying so hard. Maybe that’s all he means: “Home.”

Maybe he is talking to me when he says, “Home.” I rarely am. After I drop him off at school—his still-small hand in mine, his weighty backpack stuffed with his feeding pump and supplies, some extra pull-ups, some lunch he won’t eat, slung over my shoulder as it’s too heavy for him with his weak torso and stumbly gait to carry—I drive to work and spend nine hours there, sometimes more, doing what needs to be done. After, I go to the gym, or to play tennis. Often I stop at the grocery store, run an errand, meet a friend. Sometimes I have a drink or two on Fridays. My husband or the sitters have cared for him since the end of the school day, 2:30. I am rarely home before 7:30 and his bedtime is at eight.

At 8 pm, I once again I wrap my hand around his, support him as he unfolds his stiff legs from his usual cross-legged position on the couch, walk with him to the bedroom. A nighttime pull-up—thank god he hasn’t yet outgrown the XL children’s size yet—, some warm clothes as his figure is so slight he is always cold, melatonin to help him fall asleep or he’d be up for hours like he has been his whole life, his brain waves misbehaving since the beginning, and he curls up with his favorite blanket, now almost thirteen years loved, and descends hesitantly into sleep. I realize I’m little more than a token mother by normal standards. But I will spend the next ten hours with him and with luck he won’t wake to know I’m there.

I climb into bed next to him because I still don’t trust that his seizures are truly under control. Even his most recent tests show the atypical activity is still happening and happens most obviously when he sleeps. The shark is in the water. It’s been almost three years since his last one but I am well-conditioned to believe it’s only a matter of time. Seizures do that to you, create an environment of unsafeness, a standard of alertness, not unlike expecting a bomb to go off. My therapist called it PTSD, but that seemed somehow like I was appropriating someone else’s holy terror. Yes, he’s had a seizure on a plane, causing it to turn around mid-flight and return to the airport. He’s had one in a hotel in a strange city and an emergency team stormed our room and rushed him to a strange hospital we struggled to locate. He’s had ones that turn him blue, ones that wouldn’t end despite medication, some ending in a call to 911 and the lights from a first-responder fire truck and the following ambulance lit our street and woke our neighbors in the middle of the night. “Those poor people,” I imagine they said to one another. “There by the grace of God go I,” I imagine they meant.

We stopped trying to vacation. We didn’t even trust a day trip to an unexplored town, or a nearby water park. It became hard to leave the house if we didn’t really have to. At least at home, the curtains hid the worst, and our brave smiles did the rest. But at the same time, it became harder for me to stay in it. The walls closed in. The doorways shrank. The air grew heavy. Being unable to help my child, to ensure his safety, did something to my pride, did something to me. I began looking sideways at life, never wanting to catch its eye in case it noticed me and lashed out again, master to servant, wolf to lamb.

For the first 17 years of my life, I lived in the same house on land that my father’s family had owned for 3 generations. From as early as I can remember, I wanted to be anywhere but there. Not that my home was unsafe; just that it wasn’t ever me. I’ve been restless when it comes to houses ever since.

Like any other 20-something, there were numerous apartments, but I’m always a little shocked to say aloud to someone that I’ve owned four houses. We bought our first when I got tired of living in other people’s properties. Duplex owners had worn me out. We had no savings, but started circling houses for sale in the local paper, before, I hate to say, the Internet was anything more than AOL dial-up. I had heard about a neighborhood where all the gays had moved: cheap and ripe for reinvention. I got pregnant while we lived in our starter house, painted baby-poop brown, which featured a tiny shed in the back yard that once housed the previous owners rideable train engine. I was sure we needed a bigger house since this one had two bedrooms on two different levels. We were starting a family: we were going to need space. Lucky for us the neighborhood had boomed and we sold the house for double what we’d bought it for.

The problem with selling a house in an in-demand neighborhood was that it sold quick, and we struggled to find the next house, the house my son would be born in. We bought a four-square on a busy street that had pocket doors and a dramatic stair-case up to the second floor. The backyard was expansive. I should have loved the house, but it felt dark with its deep mahogany woodwork, high ceilings, four bedrooms, and the start of the seizures.

In less than two years, we were walking around the neighborhood and saw a for-sale sign. Mark ran up the stairs and peaked into the house, while I waited on the sidewalk with Noah’s stroller. “You’re going to love this house,” he said. And we bought it, selling our cavernous turn of the century house for a small loss. Our new house was my dream house. A 1020s California bungalow gussied up by a previous owner who had also been a carpenter. Classic stained glass windows, built-ins, light woodwork, plus a high-end kitchen with granite countertops and a Bosch dishwasher. I was in love. But our needs outweighed what the house had to offer. The stairs made the house unsafe for Noah; cancer made the house a hospital. So again, we moved.

Last year we moved into a new house. It’s big, too big for a family of three. But there is space, in the rooms and in the halls. Space between us and the neighboring houses. Space between us and each other. Space akin to breath akin to hope. For the time being, we’ve left the memory of his many seizures behind, and they have yet to darken this doorstep. Cancer too, for that matter, though there is now room for a lodger. I fear they both will catch up with us before long so I keep moving, superstitious of getting too comfortable, of safety denied. Maybe if we don’t stay too long, they’ll lose our scent. Maybe if I don’t stay still too long, I can dodge weight of my choices.

“Home,” he says, but I don’t know what that means.

Taking Control of Your Health, a Q&A

Leslie Michelson’s terrific book on navigating the healthcare system, The Patient’s Playbook, is coming out in paperback later this month.

Navigating the realities of the system due to a family medical emergency at the time when the book was released, I found the advice and guidance Michelson offered so helpful that I requested a copy for everyone in my office. At that time, I wrote:

“Within every conversation about healthcare is also a conversation about our mortality. While none of us want to go through chemotherapy or surgery or chronic disease maintenance, one thing is true: if you don’t act as a defender of your health, who will? And with The Patient’s Playbook on your bookshelf, you will have a game plan for turning defense into offense in order to take control of your own healthcare.”

Handing a book on healthcare to someone, and saying “you’ll need this someday” is what you might call a tough sell. People don’t want to think about. But the conversation is important, and with the paperback coming out this month, we thought we’d revisit it.

I sent Leslie some questions, and he was kind enough to answer. This interview was originally posted on 800-CEO-READ’s In the Books site. Below is an abbreviated version of our conversation; please click over to read more of my Q&A with Leslie Michelson.

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Sally Haldorson: It seems as though in writing this book you’ve a strong commitment to insuring that people realize doctors are human, with as many presuppositions and influences and biases as any professional. In your introduction, you write in regards to the demands on primary care physicians: “No matter how charismatic, empathetic, and effective a doctor is, he or she cannot care for a human being in fifteen minutes.” Yikes! I think most of us can think back to our last doctor’s visit, whether 15 minutes or longer, and wonder just what was missed. How does planting this seed of doubt in the process (dictated by insurance companies) help empower patients? And do you think it is key that you aren’t an MD, so you can raise such questions?

Leslie Michelson: Physicians work very hard to do the best that they can in a world of constraints. They’re under enormous pressures to see more patients, more efficiently, while meeting enormous regulatory and reporting responsibilities. They’re very aware of their constraints, and part of my goal is to make sure that the patients who are the beneficiaries of their services have the same kind of knowledge of the constraints in which the doctors work, so they can better partner with the doctors.

My view is that our system doesn’t have the resources to provide everybody the quality of care that they aspire toward, so we should tap into this tremendous reservoir of 320 million Americans who have the energy and the ability to act as effective consumers, just as they do across the rest of the economy. So, it’s not so much sowing a seed of doubt. It’s informing patients so that they can use their intellect, their energy, their experience, and their intuition to team with their doctors to get better outcomes.

And you see that happening in other spheres. For example, at virtually every school in the country, parents are helping teachers by providing additional resources so they can spend more time teaching students. A lot of people are now do-it-yourself folks for home repairs, so they go to centers around the country, they get online videos, and they figure out how to do home repairs. In the medical profession, patients will get better outcomes if they become more engaged consumers.

SH: You advise that “[f]orging a strong partnership with a caring and committed primary care physician is one of the most important first steps you can take in protecting your health.” Isn’t that easier said, than done? Many of us are forced to see nurse practitioners or physician’s assistants instead of ever getting to see a doctor. I know that my son hasn’t seen his primary neurologist for years now, and while we very much like his physician’s assistant, it certainly has done nothing to strengthen our relationship with his neurologist, and if something traumatic were to happen, that doctor wouldn’t know, hands on, much about my son’s past few years. How do we go about asserting our need for an attention-giving PCP when the system seems to be moving further and further away from enabling such a relationship?

LM: I am an enormous believer in the value of advanced practice clinicians. Nurses, physician assistants, nurse practitioners—they all have high levels of clinical training. They are under-utilized and can be extremely important participants in a properly configured healthcare delivery system in the future. If you’re generally well, and you’re regularly seeing a capable advanced practice clinician, you can get excellent care, because those professionals are trained to identify significant clinical issues and refer them to physicians and specialists.

Our experience has actually been very positive with them. My experience with other similar professionals is also very also positive. Every major law firm in the country has a cadre of talented paralegals. There is no dentist’s office that functions without effective dental hygienists. I’m a big fan of it because I’ve seen it really work. For example, in my personal experience, as I related in The Patient’s Playbook, I had a surgery by the Chairman of Surgery at Yale New Haven, Dr. Rob Udelsman, who had, at every step of the way, Patricia Donovan, RN, who has been his right hand in doing these things for 15 or 20 years. They are a team working together; that enables them together to provide people with the highest quality care. I had a very complex surgery, and although the surgery was done by Dr. Udelsman, the entire experience could not have been as good without Patricia Donovan being at his side. I don’t think that moves us away from having an enduring relationship with a clinician; I think it moves us forward.

SH: My husband, who was diagnosed with leukemia mid-summer last year, was mis-diagnosed with three different issues over 3 months, before taking himself to the ER where he was admitted to the ICU and it was immediately apparent that he had an astronomical white blood cell count. A friend, upon hearing this, said that it’s not unusual for that to happen because doctors don’t look for cancer in an otherwise healthy, moderately young person. But in some cases, it seems, that the new “Google-fication” of self-diagnosing is bringing about a public of paranoids, so if my husband had gone into the doctor asking them to check for cancer because he was feeling rundown, would they have done so? He certainly felt like he was taking charge of his illness by making appointments with his neighborhood clinic, but he never thought it was cancer, so he didn’t push for that diagnosis. Shouldn’t we be able to trust in the expertise of our medical providers to see what we can’t see?

LM: First I have to say, I’m so sorry that your husband had to deal with a misdiagnosis. Sadly, we know that misdiagnoses, delayed diagnoses, incomplete diagnoses—these are major challenges across the healthcare delivery system. The studies that have looked at this problem find that between 40,000 and 80,000 people a year lose their lives because of diagnostic errors. So, I have to say, I’m really so sorry that this happened to your husband. As we discuss this though, what I’m concerned about is the appointments at the neighborhood clinic.

There are two ways to reduce the probability of getting a misdiagnosis. One is to trust your instincts. We all are in touch with our bodies, and we know when something seems to be more significantly wrong than it’s ever been before. Maybe it’s a level of fatigue that you haven’t experienced before, an abdominal pain that maybe you’ve experienced before but is stronger now and has been going on longer. Or headaches that are happening more frequently, and have greater pain, in ways you haven’t felt before. If you have those things, what you need to do is trust your instincts, listen to your body, and take action on it. If the physicians you’re seeing are telling you, “It’s all between your ears, there’s nothing to worry about,” or “Your gut is wrong,”—then go to additional physicians in a timely fashion until you get a diagnosis that sounds right to you.

The second thing to be discussed here is the notion of a neighborhood clinic. Particularly when it comes to primary care, I believe very deeply that you need to have a strong and enduring relationship with an individual physician. That person can see you over time and have the benefit of observing changes in who you are and how you’re functioning. They’ll be looking at you, and they’ll say, “You were here 12 months ago, and it looks to me like you’ve put on some weight,” or “you look particularly pale right now,” or “you’re generally energetic, and you’re looking down and depressed, what’s going on? Talk to me.” Those kinds of observations about who you are holistically can make a difference. They can enable a primary care physician to exercise his or her clinical intuition and identify potentially serious issues earlier.

If in fact your husband had such highly elevated white blood cell counts, he probably had some symptoms. If he had a strong and enduring relationship with a primary care physician, that physician likely would have recognized those symptoms and/or those lab results as being aberrant, and she or he would have perhaps ordered additional blood work, and made the referral to a hematologist, which is what the first person who saw your husband should have done.

You should believe in the capability and the competence of your physicians, but if you don’t—if you have reservations about them—you need to change physicians. But, even if you believe in your physicians, you need to respect your perceptions of your health and your intuition. So, if you’re feeling off, even in a vague way, and the physicians that you’re seeing are incapable of giving you a diagnosis or developing a treatment that addresses it, I suggest you take yourself to a higher level of expertise. Get in touch with an academic medical center, figure out which therapeutic area might be most appropriate, and make an appointment. Bring your medical records and have someone with fresh eyes look at what’s going on.

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ABOUT THE AUTHOR

Leslie D. Michelson is the founder, chairman and CEO of Private Health Management, a unique patient-focused company dedicated to helping individuals and corporate clients obtain exceptional medical care. You can learn more about Leslie, The Patient’s Playbook, and “The No-Mistake Zone with Leslie Michelson” podcast at www.patientsplaybook.com.

Something We Ought to Do

It began to snow, and I thought we should do something that people do when it snows. So we laced up stiff boots, leashed up our dogs, and made for the mounds of white that had already turned our neighborhood into a movie set, like Jimmy Stewart might come shooshing down the sidewalk (in a parka and cross-country skis instead) and we will sing, “Buffalo Gals, won’t you come out tonight, come out tonight, come out…” Or maybe you are Jimmy and I am Donna Reed, and if you were romantic, you’d promise to lasso the moon, but instead, you are quiet and maybe just following along.

The fresh snow–white and silver glitter flickered in the streetlights, layered on the dogs’ backs like inadequate sweaters–, ahead of us was still untouched, ready for our pack to leave tracks, evidence we’d come out into the world, rather boldly into the cold, because sometimes life becomes a movie scene when you venture out into it.

It ended the way most things end. No matter the splendor, my toes got cold, and I got tired of the fleet wind on my face, before we’d even crossed halfway into the park. No doubt you had more stamina for the weather; nature never seemed to dismay you like it does me. So I posed a plan as I so often do: Let’s take the dogs home, I suggested, and walk a few more blocks to that Italian restaurant on the corner. We’ll walk there, like people do in movies, like people who have a watering hole. God knows, we live in Milwaukee; it’s a shame not to have a corner bar to call our own.

The restaurant was warm and warmly lit. Amber lamps glowed on polished glasses lined up on the bar. My wine was red and your pasta thick. It made the walk through the snow and the park in our early-winter stiff boots all the more idyllic, like there might be movie music soon swelling, and the speed of the action would slow just enough to draw out the moment before the two love interests kiss. Eating eased your irritation with me for pulling you out of the house, like a dog on a leash, to fulfill these ideas I have of things we should do, because it’s what people do, and not always because I long to do them.

Things change as they so often change. Those dogs are long dead, and our black and white mutt hates to get cold or wet so there is little point in going on a leisurely walk in the snow with a dog that prefers dry paws. But I suppose he isn’t too unlike me. I only make myself go out if it seems like something I should do. And sometimes it’s worth it because of moments and memories: that night, that snow.

Now, you can’t be out in the snow, well, the cold, and no sun for you either, which makes going out in March in Milwaukee nearly impossible. Maybe in summer you can walk through our park before dawn, before the sun is up. Photo-sensitivity from the chemo is a danger, but so is everything, it seems.

I shouldn’t have been worried that we’d run out of scenes. Sure, we don’t amble about the neighborhood much any more. But when the doctor told me you had leukemia, I wondered what my next lines should be. And when I told your parents, who had already lost a son, that their son had leukemia, I don’t think I was speaking, but my idea of speaking the words was doing the miserable work for me. So many moments these days, when it is easier to become the watcher and the watched.

All through this past year, I’ve put myself in widow’s dress time and again, but it seems as though you’re going to make it and it’s funny how I know less about this old role of being your wife than the one for which I’d been practicing unwritten lines. We have a man from Europe to thank for his stem cells, for your survival. And maybe someday we will meet him–A handshake? A hug?–just like in a movie. It’s definitely something we ought to do.

This Too Has Merit

In graduate school, I wrote a short story about a old man with colitis. The only reason why was my professor challenged me to stop writing about love. She found my work cliché. (Though she was the same woman who wore a t-shirt that read, “Would you like fries with that?” to my Master’s defense, as cliché a joke about English degrees as there is.) But I didn’t love ugly truths then, so of course the story was about love, about an old man who rejected love because he couldn’t control his bowels. But I did give the man a dog, because otherwise he’d have had no one to commune with. Dogs think nothing of shit. In fact they seem to have an appreciation for all the meaning to be found in a pile dropped on the curbside. There is a lot of who’s, why’s and when’s to be learned from what is left behind. I thought I was edgy when I wrote about shit, but now that I know how it represents the very mundanity of life, not the extreme, it seems ridiculous to bring elimination to the page. And that’s the irony, certainly. I have a husband with blood cancer; chemo and a stem cell transplant aren’t terribly kind to his insides. I have a disabled son who is afraid of the toilet at age 10. So here is what I wonder: Is it my responsibility now to write here about loose stools and “BMs” and colonoscopies and Miralax and pull-ups in size Large and the guilt I feel when my friend takes my dog for a walk and he’s eaten something that doesn’t agree with him and they must wipe up the liquidy mess from the neighborhood lawns or park sidewalks? Will there be a reader who says, yes, my life is shitty too, in a similar way that you write it? Maybe. Now I think I wrote that story about the old man all wrong. Ridiculously, love is revealed when we agree to clean up after another living being’s literal or figurative shit, especially when you think you cannot bear it even one more time. Even when you gag and wonder what your life has come to, and how maybe you wanted a more elevated life, not one that reminds you, without consideration of your own desires, of the most base element of humanity besides death. Maybe Rosa, the old man’s love interest, had once been a nurse or a doctor, a mother, a veterinarian, and she wouldn’t have batted one of her false eyelashes at his trouble. But no, I didn’t even given her the chance to say yes to a man neurotic about his own shit. Instead, I’d wanted him lonely, alone except for his beagle. So he (or I?) couldn’t even ask someone to love him. Because I couldn’t imagine someone loving him, not if they had to discuss shit. But that is an obvious difference between true life and fiction: we are not asked about what we are willing to deal with, or what kind of life we will accept. We are presented with a thoroughly messy life, and the only choice we have is to keep picking up after ourselves and the ones we love with a fierce determination and a very short memory.

Disaster Preparedness

We tell ourselves stories in order to live.
~Joan Didion

I almost lost my husband, somewhere
between here and home. It’s like I put
him in my pocket without realizing
there was a hole in the stitching. Really
he could be anywhere. I retread my steps,
scanning the ground left to right until
my vision blurred and I thought maybe
I was crying but instead I was tired.

It’s been hours but maybe days since
I last held his hand in my hand. Since
then I’ve bought a condo, a Mini, hired
a nanny. I’ve pre-paid a dog walker
so I’m never in demand. I’ve got people
aplenty, and I’m certain with enough
money we will be all right. It’s funny
now I am without him, it’s like he
was never here. So when I found him
waiting at the corner–we were to meet
here at half-past five!–I’m not sure
what to do with a husband. I’d gotten
accustomed to being a widow if only
for a moment or two. The abandonment
felt like a gust rushing the open door,
scattering my plans like stacked papers
turned to airplanes, to confetti.
The shock of cold air ran sharp along
my future and swept it clean.

But soon I shivered, wanting to lay down
behind him, pull up my shins against
his back, stoke the ember near-dormant between
the half-shells of our old bodies. I return
my purchases–no warranty for wishes–
and hand him the keys to our house
where I keep the needle and the thread.

Cosmogony

To see him lying there, bloated and nearly naked due to feverishness, tubes like exterior veins protruding out of his neck in a knot of grotesque jewelry, a patch of dark blood–had it gushed?–spread out and dried on his chest, a thrum thrust through my torso like when a plane breaks the sound barrier. He turned to me when I arrived, when I said, “Wow,” careful to keep a certain amount of lightness in my voice, like when you slip on the ice and fall hard but assure everyone concerned that you’re just fine, and he said, “I’m sorry, honey.”

I think at that point he probably knew it was bad since the machine those tubes attached him to was removing his blood, cleaning it, and returning it, in an effort to quickly reduce the number of white blood cells which had been replicating unchecked in his blood. A science teacher, a teacher of biology and chemistry, certainly he knew. But he is also a pragmatist with a healthy shot of optimism. In other words, he’ll face what he has to face, but he won’t think the worst until it’s absolutely proven to be happening. Then it’s a matter of science; luck hasn’t much to do with it.

The women from the blood center who worked the machine, who showed me the bags of his blood, both red and white, mentioned chemo to one another. I didn’t let on that I’d heard, but soon I went out into the hallway to find the hematologist and suggested they make an effort to talk to him about the chemo since he had not been told directly that he had anything that necessitated such treatment. I said all this without so much as a crack in my voice. She was unwilling to commit, to declare it was cancer, to say more than that they suspected a form of leukemia, because the lab results weren’t in yet. But she promised to have the resident stop by and explain what they’d learned as soon as she could track him down.

I went to his bedside, and asked if they’d told him they were going to start chemo, that it was likely leukemia. He said no. He stared up at the ceiling. Tears pooled in his eyes. And then they were gone. I told his parents when they arrived–they drove from Minnesota on a feeling that things were not all they appeared to be, parents who had already lost a son to cancer–, that it was likely leukemia. His mother shook her head, said it might not be, that the tests might reveal a less devastating diagnosis, but I was sure, just as I’d known there was something wrong with our son’s development before anyone else believed it could be true.

The resident explained to us what Acute Myeloid Leukemia was. He used simple pictures on a white board to illustrate what had happened in Mark’s body before we could know it was happening. My memory of these moments is solid–I see the room, his rough sketches, and hear the resident’s voice, a reassuring Indian sing-song, clearly–but I’ve turned the information around in my head so many times, trying to apply some sort of logic to the incredible, that I’m afraid each time I speak that I’m repeating some laughable interpretation of the facts like a game of telephone.

As I understand it, a chromosome went wrong and one rogue cell started birthing premature white blood cells which then replicated more premature white blood cells, ad infinitum, driving the platelets and red blood cells out of the neighborhood that was his bone marrow. And because immature cells can’t do the work that mature blood cells can, his immune system was an inadequate barrier against any kind of illness. The cause is a gene mutation, a mutinous enzyme, a scratch on the record, that caused his cellular production to go awry. If left untreated, the immature white blood cells would proliferate until he is dead. Because this new chromosomal error is uneditable, they must clean out his bone marrow and replace it with another person’s.

Some leukemia survivors regard their bone marrow transplant to be a rebirth. They take pictures of themselves celebrating their new birthday. Some report changes in their bodies–gluten intolerance, overly-sensitive skin, a lingering fatigue. Some make vague references to not feeling quite themselves. But I can’t help but fear, in a kind of wondrous disbelief that the best science fiction engenders, that the man I married, whom I have lived with for the past 20 years, will not, at the end of this odyssey, be the same. Is this the ultimate test of nature versus nurture? Creationism versus evolution?

Our son’s neurological disorder is undiagnosed. The closest we get is to say he has a seizure disorder, but there is no answer to the question: why him? There is no cause determined, no prognosis predicted. The geneticists and the neurologists and the epileptologists and the other specialists have looked at his test results, the scans of his brain, the vials of blood and spinal fluid, the space between his eyes, the shape of his fingernails, and found nothing to explain why he is as delayed as he is. Is he–are we?—just unlucky? Perhaps the world would be a friendlier place for him and for me if we had an explanation for the idiopathic symptoms that plague his development and his safety. Maybe we could put the questions to rest–Is it something I did?–but then what good has that done us in Mark’s case? Leukemia is something that makes sense to doctors; it is an affliction that has a rote protocol. But it doesn’t mean we don’t ask the same questions: why him? why us? what happened?

Life strikes. Bang. Mark’s cancer was like a car crash without the car. One day he was home, then the next he was beginning a month in the hospital, the start of a six month process toward getting cured, and maybe a two year process to become himself again. And yet, I took it in stride. Maybe it was shock. Maybe it was the Zoloft I’d been taking for a few years since my anxiety over my son’s health and special needs had turned into constant high wire walking. Maybe it was our son’s recent 3-week hospitalization over the previous Christmas and New Years that had prepared me for another long haul, another effort in compartmentalization, the practice of segmenting my strife from my life.

Because that’s what you do when you abruptly–is there any other way?–learn that your husband has cancer and treatment begins even before either of you has time to prepare. There was no choosing, no strategy, no warning that I would suddenly become a single parent of our special needs child, the primary money-earner, as well as the grateful, if begrudging, hostess to the constant stream of family members and friends and child caregivers and dog walkers and house cleaners who offered their assistance. Every one of the 25 days he was in the hospital, I kept it together. The gun had gone off, the race had begun, the ground moved beneath us, and we had no choice but to run, a marathon and a sprint both. Exertion and fear of stopping forward movement drove every decision, every action.

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the lightswitch makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the answers are so minor compared to the wonders of the world, the wonders of blood, the white and the red. One day, long before we knew Mark had cancer, something happened and suddenly? He had cancer.

And maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still there? How much of me is memory? And, maybe I wonder, how many times can a person be recreated before the pressure becomes smothering and the light just dies out.