Medical Update

Mark’s surgery has been scheduled for next Thursday. This is The Big Surgery. The fact that his forehead skin is now opened up is the reason that they pushed to schedule the surgery for as soon as possible. With three of their top surgeons involved, one of whom had to have a completely cleared schedule because Mark will be his only patient of the day, this is the fastest they could go. The fact that Mark broke his neck is not a limiting factor for moving forward with the surgery.

I don’t know, folks. This is … just … Oye. So much.

Mark currently is doing a good job of keeping his neck brace on. He seems down. He won’t talk about it. He watched TV the entire day today.

Watching Mark’s quality of life be shaved down to an even finer point is very, very difficult. He started to look forward to some simple things. He had started to have things he hoped to do. To shop for tomato plants. To plant them. To play poker with his friends once in May. To go the driving range with his friends.

I know there is no option except to move forward.

And still.

This. Sucks.

Super Aggravating Dumb-Bad Medical Development

Yesterday was TERRIBLE and you know I am not one for hyperbole or negativity.

“Mark broke his neck,” I texted a friend. Then when I called her, she was crying. “Why are you crying?” I blurted out. “I’m so worried about you,” she choked out. I on the other hand was completely emotionally shut down, so, you know, fine. That’s how I get through trauma. I go deep into my brain bunker until the bullets stop flying, and then I emerge and deal with the dust and carnage.

There will be a lot of dust and carnage from this one.

The night before, Mark went to use the bathroom. I heard a crash and found him lying on the tile, facial abrasions bleeding, nose bleeding. He struggled to stand. I had to use all my strength to pull him up and help him onto the toilet and then back to bed. This is not why I took him into the ER, although any head injury would be a fair reason to get Mark checked. The next morning, he was at his cognitive baseline so I felt he was okay. We went to the ER because after a spat of morning vomiting, the skin inside his forehead burr hole opened up and started bleeding. This being an outside-world breach into the intracranial world of Mark, I freaked. Internally. Externally, I calmly said we should get this checked out. In turn, he calmly insisted on eating ramen before going to the ER.

The ER. Normally, I can handle the ER just fine. I settle in, knowing it will be a long haul. I had remembered snacks and a phone charger. We drove in during morning rush hour. I had formulated a plan for efficient delivery of information to the first medical people we encountered. I thought I did a good job. And they did a good job of relatively quickly giving Mark an EKG, CT, chest x-ray, bloodwork. The attending was attentive and kind when she came in and said, “I have some bad news.” Mark had fractured his C3 in the fall. They needed to put him in a neck brace and make a plan.

Mark and I were shocked. There’s a lot on my list of worries and things to watch with Mark. Paralysis was not one of them. As Mark settled into bed with his new neck brace, I googled C3 fractures. Aka “Hangman’s Fracture” as these are the bones that snap during a hanging execution. I shut down my phone and looked away from the Google.

Our ER experience was all downhill from there. 15 hours later, they never did make a plan. We didn’t see any doctors for hours and hours. They did more tests, and more tests, and more tests. Many CT scans. An MRI. More x-rays. All day, I had gotten inconsistent tiny snippets from the nurses. “They” think he’ll be discharged. They think he can be in bed without the neck brace. Oh now they think he has to have it on! He can eat. Oh now he can’t eat! He can walk to the bathroom. Don’t let him get out of bed! Mark was quite patient, as was I. For the first 12 hours. After that, not so much. He pulled off monitoring equipment. He asked me repeatedly to leave.

What’s that movie from the 70s or 80s where the mom freaks out at the nurses because her daughter with cancer isn’t getting the treatment she needs? That’s me. That’s what I became. It started slow. I ramped up requests. Specifically asking to see the ER doctor, the attending, the resident, the neurosurgery residents. It ended up with me in the hallway, staring at the residents in the fishbowl, and imploring them to find someone to talk to us about what was happening. Was he going to be admitted? Why were they ordering all the tests? What were the results? How do I take care of him. What is the plan.

I could read the test results on the hospital system app as they were uploaded to Mark’s medical record. I can’t understand all the jargon, but I could glean that his fracture was stable. No blood vessel involvement, no spinal cord involvement. Bloodwork consistent with last week’s. CT and MRI unchanged from last week’s.

I finally reached the point where I decided that his case must be boring enough that it didn’t matter. That’s how bad our experience was, that I got to a place where I decided to take the guy with the broken neck home rather than continue with this ER debacle. I grabbed his hand, at 12:20am, and said, let’s go home. I put him in a wheelchair. I tapped on the window of the unit fishbowl to get the resident’s attention. He came rushing out. “They’re thinking about admitting him now, did someone tell you?” For god’s sake. NO. No one had told us. I don’t even know if that is true. I rolled Mark to the foyer and went to get the car out of valet. When I came back, the resident was there. “Does he still have his IV in?” Oh yes, whoops. We had totally forgotten. A nurse came out and removed it.

When we got home at 1am, Mark sat on the couch and immediately took off his brace. I lost my mind. I said all the things that you’d expect after a day of next-level stress. I told him he was being selfish, and stubborn, and risking paralysis. As unproductive as it can be to argue with Mark, thankfully something I said took root and he put the brace back on.

I texted my nurse friend Carolyn this morning, and she came over to give Mark a good nurse talking-to. He sat silently and listened to her explanations of how to take care of his abrasions, his burr hole wound, his fractured neck. Keep the brace on, 24/7, and possibly for many weeks, she urged. Who knows where he sorted it all into his brain. It at least helped me to know what to do. Hopefully it helped Mark know what to do. And not do.

I’ve followed up today with the PCP (already had a telehealth visit) and neurosurgery (crickets). I put a call into the patient advocate line at the hospital to discuss what happened in the ER yesterday. Mark is on the couch, neck brace on, and I am now watching him like a hawk. Like a better hawk. Is that an eagle? He CANNOT fall again.

My back is killing me. My fall down the steps, trying to get Mark off the bathroom floor, sitting in an ER folding chair for 15 hours, the stress of it all.

Where is the balance for this? Friends, I will find it. I will. For now, I am fried.

Stone Soup

Wednesday, Part 1: Mark would not stay awake. He made it from the bed to the couch and fell back asleep. I woke him up to see if he’d have some breakfast. His right eye was ever-so-slightly not focused. His processing was slow and at times non-existent. I brought him his medicine and left him to sleep. I checked on him after my class. Same. I could wake him up, he knew the year and month, but he went right back to sleep. I taught another class. At noon, I woke him again. Did he want lunch? No. I made him lunch and woke him again. I watched patiently as he slowly struggled to get his feet into his loafers. I held onto him and guided him to the table. He ate. “I’m going to try to get him to the ER,” I told Michael. Mark just stared at me when I said we needed to go to the hospital. He also didn’t move. I tried choices, like you would with a child. This, or that? “Do you want to bring your water or leave it?” “Do you want Michael to drive you or me?” “Do you want me to bring the rest of your sandwich in the car or put it in the frig for later?”

Michael helped me get him into the car. When we got to the ER, Mark accepted a wheelchair.

The usual tests. Bloodwork, CT. The ER doctor pointed to her glasses. “What are these?” “Glasses,” Mark said. She pointed to her wrist. “What’s this?” she asked. “Wristwatch,” he said. “What does it do?” she continued. “Tells time,” Mark responded. She plucked a white board marker off a holder on the wall. “What’s this?” He stared. And stared. And stared. She pulled the cap off. “What does it do?” she tried. “It highlights things,” Mark finally said.


Did you ever sit in your car in the rain, wipers off, and watch the water flow down your windshield? Pathways are formed. The drops land into them and follow the channels created by their predecessors. And then occasionally, one veers off and starts its own channel. Sometimes it’s because it has started to rain harder: a variable has changed, and the channels have to change, too. Sometimes it’s unclear why one drop goes another way. Once it does, though, other drops will follow. Suddenly there’s a new pathway.

This is what Mark’s brain can remind me of. There are pathways that his thoughts know to go down. They’ve gone down them for many years. Sometimes, a variable changes. Some electrical storm in his brain? Something. His cognition veers off onto an unexpected path. Or the paths are wiped away. Something that used to connect now doesn’t. We wait to see if his mind rivulets will refill.

The ER doctor and neurology resident think that most likely, Mark had another subclinical seizure and was in a long postictal period. Really it’s just a guess. Seizures don’t leave a trail, and the breadcrumbs are tough to follow. “It would be great if he had bit his tongue or urinated on himself. Then we’d really know,” the resident said. He’ll learn not to say that someday, I thought.

As the hours passed, Mark slowly returned to almost-baseline. He made it about seven hours before the AMA pathway opened up in his brain. “Well,” he said as we watched Andy Griffith lying together in the ER bed (that Ronnie Howard really was adorable), “you about ready to leave?” Between the nurse and me, we succeeded in keeping him another hour. He did get the chest X-ray, but did not get seen by neurosurgery and did not get the MRI they ordered to rule out a stroke. Eventually, he stood up. I held his hand, and we walked out. While waiting in valet, I got a call from a neurosurgery resident. “So, you decided that he was postictal and didn’t need to be seen by neurosurgery?”

No, dude. Why do I have to explain what Mark’s brain injury is like to YOU of all people.


Wednesday, Part 2: While the EEG crew took Mark through their paces, I slipped out to the cafeteria for a break. A sandwich, a Diet Pepsi. Reached into my purse at the register: no wallet. Pulled out a tangle of phone chargers (I had accidentally brought two), crushed receipts, Covid vax cards. No cash. No credit cards. An empty checkbook. No wallet. I had no idea where it could be. Slight panic. In my fluster, I was verbally vomiting my situation. Husband in the ER, oh Lord I hope I did not lose my wallet, okay well do you want me to put this food back then? The cashier pulled out her purse. I’ll buy your dinner, she said. “Wow. Thank you. I have some gift cards! Pick one!” I held out Dick’s, Panera, Target. No idea the value on any of them. “My granddaughter likes Panera, and I have her tomorrow,” she said, plucking one from my hand. I think — and hope — that it worked out in her favor.

I was wearing my happiest overalls, bright waves of the rainbow from top to bottom. When I got back to ER security, the guard waved me through, saying, “I remember you!” The EEG technicians were still working. My wallet anxiety was raging, and I decided to retrieve my car from valet, check for the wallet, and then repark the car. While waiting for valet, a tall, masked, blond-haired woman walked by me. It took me a second to process her familiar features, and I yelled at her back, “Amy?” She turned. It was Alma’s former therapist, the one that held both of our hands and guided Alma through adolescence with a stunning blend of skill and compassion that is unparalleled in my experience. “I’m double vacced!” we said simultaneously and then embraced.

A hug, from a great person, right when I needed it.

And my wallet was in the car. I didn’t want to be the jagoff that takes their car out of valet and then instantly gives it back to them to repark. I remembered that I had driven to the ER on an empty tank. There was a gas station not far away. Filling the tank now would relieve my run-out-of-gas anxiety in getting Mark home.

I guess this is what Mark means when he says I could be more pessimistic. I could try harder. My back hurts because I slipped and fell down the steps the other day. I’m pretty sure I need a root canal but I can’t figure out when to schedule that while waiting to hear when Mark will have surgery.

But seriously, I met a nice cashier today, ran into an old “friend,”and got time to refill the tank. Mark and I stayed up, after getting home from the ER. We were both totally exhausted. But his brain was fully back online. We talked to the boys. We talked about how much he wants to drive again. “I just want to be able to go to Target if I want to,” he said. We talked about his experience with his illness, and my experience of his illness. He had left and come back, all in one day, and it was like a resurrection. You don’t go to bed after a resurrection. You stay up late and visit.

“Does this stuff really balance out?” a friend asked about my day, and my placing tiny goodnesses next to giant badnesses.

“It does,” I said. Listen, I know this is not a recipe. It’s what I have found that I can do to make my own life stone soup. Each time it works, it’s a victory. And a celebration.

Last night, laying in bed, I decided to go to the beach. It took me a while to choose between Lake Michigan and St. John’s. I wanted to lay my beach blanket in the shade but still be close to the water. I took turns going to each, in my mind, feeling the sand, listening to the water and people laughing. The wind was gentle, and water soothing. I fell asleep.


I’m piloting new names for my blog.

The bowls in my house are missing. This morning, Michael came into the kitchen to get his daily and unchanging breakfast of choice: a heaping bowl of Cinnamon Toast Crunch. There should be roughly 10 bowls in the cupboard. “Where are all the bowls?” he asked me. The cupboard was empty. There were two dirty bowls in the sink. I remembered that Mark had emptied the drying rack yesterday. Michael and I searched all the cupboards. The oven. The pantry. The refrigerator. Nothing. No idea where he put them.

It’s been that kind of week.

Young Matthew thinks he might keep his new middle name, Christpher. I think this is a brave and adventurous choice. I laughed for hours about this birth certificate gaffe. I recognized my delight for what it was; I am at the level of exhaustion and stress where I’m a little loopy and can easily plunge into the kind of hysteria that can morph quickly from laughing to crying, depending on how I take my next breath.

Part of it was how the whole post office scene unfolded. Mark was not in a good brain space when we arrived. He had pulled up the ladder to his mind attic and wasn’t speaking. The clerk was kind. I’m sure it’s confusing to have me, technically not legally anything to Matthew while being operationally everything to Matthew, speaking for Matthew. And for Matthew’s dad. Mark was dressed as he often is when we go out, which to me looks like some version of spy, fugitive, and old guy. He had on a baseball cap, blackout sunglasses, a mask, and his 30 year old yellowed silk softball team jacket. Even on the best of days, Mark doesn’t expend much energy on facial expressions. In this getup, in this headspace, he’s unknowable.

I led the conversation. At the point when I had to explain that Matthew’s bio momma had died, I handed over her death certificate. “I’m very sorry for your family’s loss,” the clerk said solemnly, looking carefully at each of us. I was confused. Did he think she just died? Was this some social rule I didn’t know, that you still offer fresh condolences eight and a half years after a death? Mark and Matthew sat in stoney silence. I awkwardly accepted the condolences on their behalf. Then the clerk pointed out the misspelling of Matthew’s middle name on his birth certificate. I believe I snorted. “Did you know that, Mark?” I asked. He didn’t answer. Finally it was time to pay. I had brought Mark’s checkbook. I filled in the information and passed it over to him. “Where do I sign?” Mark asked, breaking his silence. I was startled. Even though I have been taking care of all the finances since the onset of Mark’s illness, I didn’t think he wouldn’t know where to sign a check. I held my finger on the line while he signed. “Again,” the clerk said, standing as we left, “my condolences on the loss in your family.” We stood as I thanked him again. I put out my hand for Mark to hold. On good days, this can feel like what any normal married couple does. Every day, I am aware that I’m providing Mark protection, stability and guidance. This day, instead of grabbing my hand with his left hand, Mark took my hand with his right hand, like we were shaking hands. He held on as I led him out of the post-office and to the car.


I went to a Dutch Christian Reformed college, and the students had some clever ways of not cursing in practice but cursing in spirit. So for the benefit of my dear parent’s, here’s how I feel about how this whole situation went down.

Jeezum Crow.

A few hours later, dinner was cooked, eaten, and cleaned up. The boys were back on their computers and Mark and I were parked on the couch for our evening TV cycle. Mark got up and went into the bathroom. A few minutes later I heard a crash. I went running, beating Michael and Matthew by a few seconds. Mark was laying half in, half out of the shower with the shower rod and curtain pulled down over his head. When the rod fell, it hit the faucet and the showerhead was raining down on him. Mark looked confused. I turned off the water, pulled the rod and curtain off Mark and pulled him up. “It’s okay! It’s okay!” I said to no one and to all of us. I guided Mark back to the couch, where he sat quietly in his wet sweatshirt until Wheel of Fortune ended and it was time for bed.

Jiminy Crickets.

So this morning, when the mystery of the bowls happened, I ranked it right up there with learning that Matthew is Matthew Christpher. Of some consequence, but in the scope of things, not much. Michael and I did the only thing we can do. We laughed, and moved on.

No Spoons

We took our youngest grasshopper to the USPS today at apply for a new passport. Where the clerk pointed out this tiny problem. See, this is an example of the usefulness of spoon theory. Do you know how many spoons I have to deal with this? None. Zero spoons for this. “This is your name now, Matthew,” I told him.


Look how innocent Mark looks in this morning’s photo. In reality, he has been rough for the past 24 hours. He’s been perseverative, something that can happen with his wildly unpredictable brain.

I noticed it yesterday when we went to Aldi, which he loves doing. He pushed the cart throughout the store, as usual. He unloaded the groceries onto the belt and paid, as he likes to do. Off baseline, though, with my endless observation of him, he simply watched me bag up the groceries rather than helped. Then when he pushed the cart out towards the car, he didn’t seem to remember which way to go. I pointed. He adjusted a bit, but still aimed for the front of the car rather than the lane behind the car. I tried adjusting him, but he ignored me and kept going.

It wasn’t clear to me that the cart would fit between our car and the vehicles on either side. He aimed for the side with a huge SUV. With a young mom in the driver’s seat. I tried to grab the cart to guide it. Mark ignored me and kept going. He started to line it up to go between our car and the SUV. The woman looked confused. I pointed to my head, and Mark’s. “Brain injury!” I mouthed. But that’s not a universal motion, like the sign for choking. Young Mom looked confused. I quickly squeezed between our car and her SUV and grabbed the cart to keep it within the slim margin between. We navigated the gauntlet. Mark stood silently as I unloaded the groceries into our open hatchback. “I’ll take the cart back, and you can rest,” I said. “Yeah yeah,” he said, looking at me, unmoving. “YOU SIT IN THE CAR AND I WILL RETURN THE CART,” I tried again. He got into the car. I raced the cart back to its bay.

So it’s surprising, and not, when last night, Mark tried to get the car keys out of Michael’s hands. “You aren’t allowed to drive, Dad. You don’t have a license and you could have a seizure.” God bless Michael and his endless patience and rationality. I can’t imagine playing this role with your dad, when you are 20 years old.

Mark doesn’t often get like this, in recent months. And when I have to assert, NO YOU CANNOT, I feel like I’m kicking a puppy. I know it’s the right thing to do. It’s not that. It’s that I can imagine how it could feel to be told YOU CANNOT when he must feel like, OF COURSE I CAN.

It would be terrible.

I know, being Mark’s caregiver, that I am in a tiny box that is unimaginable to most. Mark is in an even tinier box. That I cannot imagine. And yet, I must keep him there.

This morning, after I told him he couldn’t take the car out for “a spin around the block,” as he posited, he laid down on the couch to go back to sleep. It was 8:15am. At 7:30am, we had talked about my schedule and us going out to lunch together.

Later, after teaching my first class, I checked in with him about lunch. “So at 12:30,” I reminded him, “I’ll be ready to go out to lunch.” “We’re not doing that,” he said. “Why not?” I asked. “Because you changed the plan,” he said. “How did I change the plan?” I asked. “By saying I couldn’t drive there,” he said.

Nevermind that that’s not actually what he had proposed. I had to go teach another class. “Let’s see how you feel in an hour,” I said.

In an hour, Mark still did not want to go out to lunch. But he had chilled out, after napping and snuggling with Robert. Pandemic puppy for the win. Who I would never kick, also for the record.

I would think anyone who’s dealt with a loved one with a dementia diagnosis can relate to this. The absolute pain of the confusion. Of saying, “No,” to something that to your loved one seems like a reasonable request, a simple pleasure.

To be the agent of denial.

I do not like it.

This is not cancer.

This is not cancer.

I just want to make that clear, because someone asked. This is the aftermath of cancer and cancer treatment. Mark is currently stamped the glorious NED (No Evidence of Disease). The aftermath of cancer without treatment would have been no Mark. Instead, we have Mark and a lot of chronic problems. And acute problems. We have problems.

On Friday, we drove the well-worn path back down to Presby and met with Mark’s newest ENT surgeon. While we waited together in the exam room, I said something positive, like, “This is the best doctor’s office! They are always on time!” Mark looked at me with a rare look. One of fatigue. At me. I gave it a guess. “Do you get tired of me being positive all the time?” “Occasionally,” he said. “Should I try to be more pessimistic?” I said, perkily. “Yes,” he said.

We were quiet for a while.

“Am I allowed to be fake-pessimistic about things?” No, he said, I can only be genuinely pessimistic. “That’s going to be hard for me,” I said.

The PA came in and shot numbing agents up Mark’s nose. This was to get Mark ready to be scoped, which is an extremely uncomfortable procedure that he literally never complains about. She checked his ears and left.

“You could complain more,” I said. “You never complain.”

Above his mask, Mark’s eyes lit up a smidge.

“No!” he said. “I refuse!”

“I bet you can’t!” I retorted.

We both laughed. Then we went back to quietly waiting.

The surgeon came in and introduced himself. “Who do we have here?” he asked Mark, pointing to me. I wondered if this was a quick cognitive check. Which would be fair, I am constantly giving Mark little cognitive tests. Yet I also have come to learn that any one data point is pretty meaningless. In that moment, Mark could say who I am to him. Also, though, a few minutes earlier, Mark had turned to me and said, “I wonder why they shot something up my nose but then looked in my ears.” On a scale of 1-10 for that remark’s indication of his cognition, in that moment, I’d give him a 3.

The surgeon palpated Mark’s head like he was shopping for a melon at the grocery store. He felt Mark’s forehead, temples and cheeks. He pressed on Mark’s forearms and watched the blood move. He had Mark drop his pants and felt his thighs.

The short of it: the surgery likely will include taking tissue and muscle from Mark’s thigh, as well as veins and arteries from his forearms, in order to fill in Mark’s no-skull “dead space” with living tissue. “We’re going to pack it,” Dr. S said, “because there’s always a chance that the tissue will separate again. He’ll have a lump on his forehead, but it will likely go down.”

I nodded. Okay. Nothing like being told during the surgical consult that the surgery may not work. Or that your upcoming trauma will be a visual reverse of the previous post-surgical trauma of seeing the skin sag between Mark’s eyebrows and his brain pulsing beneath.

“So Mark,” I said loudly and probably a little too brightly for Mark’s mood, “You’re going to go from having a valley to a mountain.”

Yes, the surgeon concurred.

“It will be a cranial approach,” he continued. Ten minutes into the appointment, I already was beginning to go down the sinkhole of mental overload. An ear to ear, incision. Again. “I think in Mark’s case, I will not be able to connect the blood vessels into his cheek, so I will need to drape them down and connect them into his neck.”

This took me a minute to process. I pictured exactly what the surgeon said. Blood vessels draped down Mark’s face. Inside, I mentally corrected myself. INSIDE his face. How do you get blood vessels from a forehead to a neck, I thought? Remove his whole face and then stick it back on?

“I’ll try to save his forehead skin, but if not, I’ll replace it with thigh skin. “

I pictured that. Hairy man-thigh-skin stuck to Mark’s forehead.

I noticed I was listing in my chair. I straightened up. I turned my focus to Mark. How was he receiving this? “Is there anything else you wanted to ask, Mark?” He looked at me blankly. “Did you want to ask when the surgery would be?” I prompted. Mark faced the surgeon. ‘When will the surgery be?” he asked.

That part remains unclear. Dr. S is deferring to Mark’s other ENT surgeon and the neurosurgeon to decide the immediacy. “Getting three surgeons together is like herding cats,” Dr. S laughed. Within a month or two, he thought possibly. Or if Mark’s skin starts to deteriorate faster, sooner.

On the drive home, snippets of Dr. S’s sentences and the images they conjured clicked through my mind like slides on a Viewmaster. Five percent chance of blood clots. A week of inpatient monitoring. Drains. Sutures. All the stuff.


When we got home, Mark laid down to nap. I called my parents to explain the situation. I had a moment. “WHO DOES THIS? Harvests and drapes veins? Psychopaths? Serial killers?”

Surgeons. Surgeons do this. And I’m grateful. And freaked out. Reasonably.

“There shouldn’t be impact on his brain from this surgery,” the neurosurgeon explained to me last week, “because we won’t be cutting into his skull.” Okay, sure. Per Mark’s request, I am willing to be pessimistic about this. I think his brain may react. Based on experience, I think that’s fair to assume.

“How did the doctor appointment go, Dad?” Michael asked later. “They’re going to attach tissue to my forehead to cover this red spot so it doesn’t get infected,” Mark responded. Michael glanced over to me for confirmation. I shook my head, yes, close enough. “Is that a big surgery?” Michael asked Mark. “Oh, it doesn’t seem like they think it will be too hard,” Mark said. Michael glanced at me. No, I shook my head.

On Saturday, I forced myself to have some me-time. I spent a couple hours with my friend Hilary. I fought a feeling of guilt, knowing that by leaving Mark home with the boys, I was negotiating some balance between my own wellbeing and Mark’s, which of course are intertwined. But I knew I needed more spoons, to use a concept Alma taught me. A “spoon” is like a mental unit representing your capacity to cope with what life is throwing at you in the moment. As I was listing in the surgeon’s office, I had thought, dang, this is going to take a LOT of my spoons. The way to get more spoons is to do some darn good self-care, whatever that looks like for you.

Driving to Hilary’s, I thought, Mark’s going to have some bad crap happen soon. I need a big dollop of love and friendship and sunlight and laughter. If ever there was a need for me to build a bunker of emotional resources, it’s now. Because whatever is ahead, it’s gonna be rough.

Filling in the Dead Space

“I’m not unhappy,” I told a friend the other day.

Most days, that is true.

Today is not one of the those days. I am messy. I am terrified, and sad, and angry, and depressed, and trying, trying to find some footholds along this path. There’s too much rattling through my head. I ask Michael and Matthew to tag-team in watching Mark for a couple hours, and I set off for the park. I need to clear my head.

I stick in my earbuds and turn on my Spotify playlist. For the first mile, the things I love — the trail and wetlands and plants and birds — don’t come into focus. My mind churns. Everything is a blur.

The neurosurgeon’s phrase keeps playing in my head: “fill in the dead space with something living.” He means it literally. I think about that for a while. The technical aspects of it. Mark’s brain and skull and skin.

Then I think about it figuratively. This is what we each have to do when we encounter difficulty, right? The dead space could be fear or sadness. The dead space can be loss. The dead space can be change. The dead space can be the pause we take at the fork in the road. Which is the next best step to take?

I’ve hit dead spaces in my life, over and over, I try reminding myself. We all do. At times, I seize up and become very, very still. Waiting for something ephemeral to brush past me, showing me the way. Sometimes, when a particularly rough patch occurs, I navigate through the turbulence by creating my own. I pick a physical goal. Something sizable and concrete. A test for my body, or at least a distraction, while my mind rassles down something else. How to adjust to reaching the ripe age of 50? I trained for and rode my bike from Pittsburgh to D.C. How to get through relationship hurdles in my 20’s? I trained for and ran a marathon. How to find my way out of a rather debilitating eating disorder in my teens? I walked 800 miles to benefit Habitat for Humanity.

The preparation is always equal in importance to the accomplishment of each goal. The training provides months of focus. The challenge provides adventure and a sense of achievement. With each of these endurance projects, I’ve been surrounded by massive support from family. My brother Scott, sister-in-law Karen, niece Allison and her wife Kelsey and their 3-month-old Ellie joined me for the bike ride to D.C. My brother Dale took on the marathon challenge with me as a long-distance running buddy. Dale also was my companion and support on the Habitat for Humanity walk that took us from Maine to North Carolina. My parents have supported me in every way, from trusting that their tiny little 19 year old daughter could survive walking an average of 25 calorie-gulping miles a day for a couple months, to coming to Point State Park to cheer on the start of our big bike ride.

Each of these events is a long story in and of itself. But my takeaway from my experiment with this life is this: challenges remind me that I can do hard things. I have to do it myself, but I never have to do it alone. All it takes to be an endurance athlete is to keep going. That, I can do.

This journey with Mark pushes me to be an endurance athlete of a different kind. Yes, I can occasionally get out and take a long hike or bike ride. This is very good for me. But mostly, the endurance being tested and exercised is that of maintaining my strength, hope, and focus on a journey with no clear destination, other than the very core of survival. His survival. My survival. And his kids, too. We need happiness as well. I think we have it, most days. I tease the boys. I find ways to be playful with Mark, which is usually verbal goofiness. We spent quite a bit of time playing with the word “twiddle” the other day, which is derived from “fiddle” and “twirl.” Mark would say, “twiddle” and I’d say “fiddle” and he’d say “twirl” and we’d loop back and start again. You’d be surprised how much of the day we can pass like this. Punctuated by naps on the couch.

I know I can get through whatever is next, but the memory of Mark’s medical trauma haunts me, cropping up in what feels like a muscle memory. The falls and seizures and ambulances and surgeries. The doctor asking me what his wishes are, should his heart stop. The surgeon saying, “It’s not an emergency, but we’d like to admit him right now.”

With last week’s call from the neurosurgeon, I am alert. I know that in the next few months, I again will experience trauma. The soft gauze covering my delicate psychological and emotional wounds will be ripped off, and I’ll have to see what needs to be done to patch me back up. It can’t be avoided, even if everything goes well with Mark from a surgical point of view. You can’t see your loved one be chopped up and reassembled without it being traumatic.

I’ve done this before, I thought on my hike. I can do it again. Breathe. Repeat.

It was around mile two that the trailside began to come into focus. The blanket of spring beauties and hepatica splashing the forest floor with pink and white. The single, fragile bloodroot blossom being hugged by its emergent leaves. Two trout lilies leading the pack in blooming along the creek. One red trillium heralding the arrival of the soon-to-be thousands that will join it in blooming over the next couple weeks. Blue cohosh rising high in the floodplain. A single mayapple leaf beginning to unfurl.

I kept going. Three miles, four miles, five miles, six miles, seven.

There’s really not much I can do to train for what is next in our lives. I am trying to rest. Rest my head, rest my heart, rest my body. Sometimes resting looks like being very still. Sometimes it looks like calling a friend, or sitting quietly on the porch holding Mark’s hand, or laying next to him listening to him breathe.

Something is coming. We will need to face it. I think we can.

TBS – Medical Update

The Big Surgery. That’s the shorthand I’ve been using for many months to describe this one. For almost a year, the neurosurgeon has been warning us that TBS might be in the cards. The craniotomy last August was not The Big Surgery. Neither was the one the August before. Or the one this past January.

“This is the ultimate fix,” the neurosurgeon has said repeatedly. “We know this will work, but it’s a very long surgery and has risks, so we want to try a different approach first.” That was last August. And then they unzipped Mark’s head and did the different approach first, in a surgery that lasted a dozen hours or so. And Mark has spent a year recovering from that.

So, this surgery is …. more complex? What’s more complex than unzipping someone’s head, removing their skull base, harvesting and installing in a tissue graft, ultimately adding some stomach fat to the graft, getting a CSF leak, and ending up with necrosis and part of your skull removed?

I mean, that seemed kinda big.

Free flap. That is the name of this procedure. The reason for it is this: the surgery in January did not actually do what they hoped. I’ve known that for a couple months now, in addition to knowing that at least one of the bad bacteria that Mark had to fight likely arrived through him being colonized in the hospital setting.

I found it too upsetting to talk about.

Since January’s surgery, I continue to visually monitor “the red spot” on Mark’s head. I email pictures to the neurosurgeon and write, “Should I worry now?” “How about now?” Not yet, he says. Keep monitoring. Keep sending pictures. Once, in early March, they brought him in for an MRI. The MRI did not show any new necrosis of his skull bone, which is GREAT NEWS, but it did show that the air pocket that they hoped would disappear from behind his forehead skin has not.

When you and I take a breath, the air goes into sinus pockets, which are surrounded by healthy bone tissue. When Mark takes a breath, the air goes up into his forehead and swirls around between the inside of his forehead skin and the repaired (and therefore “not normal” as the neurosurgeon says) lining of his brain. That’s how the bacteria established a front line up there in the first place. The goal of January’s surgery was to remove the dead tissue the bacteria was snacking on and have Mark’s forehead skin collapse against the lining of his brain. However, it didn’t collapse enough, despite the fact that if you look at Mark his forehead does look rather, you know, collapsed.

I thought I was only monitoring the red spot for fear of infection. Turns out, air isn’t too great, either.

“The path is clear… When you take a thin layer of skin and put air on both sides, it doesn’t survive…The tissue will eventually break down and there will be a draining area in the forehead…he will be left with a hole…nothing between the outside world and the lining of his brain…” These are my notes, scrawled on a piece of scrap paper during my phone call with the neurosurgeon.

“We need to fill in the dead space with something living,” he said.

He really is so very quotable.

The plan is to take vascularized tissue from Mark (thigh, perhaps) and sew it into place in “the dead space.” A plastics guy will meticulously sew all the blood vessels from the graft directly into blood supplies in Mark’s head. Then Mark’s forehead skin will have a nice place to rest right against a healthy piece of tissue being fed by a healthy blood supply, right next to Mark’s brain lining.

Like a life-sustaining tissue sandwich.

Mark doesn’t really know this yet. He knows that they want to discuss a surgery to solve the problem of the air pocket and the potential for infection. He doesn’t know it’s a 14 hour surgery, with multiple sites for wound repair, a recovery on some scale of those he’s had before, with all the risks inherent in any surgery let alone surgery on Mark. I think we have time to let this slowly unfold. The surgeon said he thinks we should do this within the next handful of months.

None of this is great news. We’ve just had the longest stretch of time since June 2019 without medical interventions being our primary hobby. Our days are comfortable. We spend a lot of time together. One day recently, I said, “We had a lot of adventures yesterday!” We had gone to Aldi and then stopped at Starbucks to pick up a coffee. “We sat on the front porch, too,” Mark said, without an ounce of irony.

Yes, yes we did. And that is much more than we typically do.

Last week, Mark and I went out to lunch. We both have had our vaccinations, and it felt okay to try. “You know,” I said, “I think you have become a different kind of partner to me. Not only a friend, not only a best friend, not only a husband. I feel more integrated with you. Like we are one.” “I feel the same,” he said. “When we are sitting on the couch together at night, there is nowhere I’d rather be.”

He was having a good brain day. The week before, he had tried to cook perogies in the cast iron skillet while they were still in their plastic bags.

I’m reluctant to give Mark back to the medical world. I have some sense of control right now. I know it’s an illusion.

Back in the day, in the long hallways at O’Hare Airport there was an otherworldly voice piped in above the people-mover conveyor belts. “Keep walking … Keep walking” the voice repeated. As I would reach the end of a stretch of conveyor belt, I would attempt to hop off while somewhat graciously maintaining my stride. Then I’d walked a bit to the next belt and leap on for another ride.

It’s the only way to keep going.

Not Poetry

Here’s my poem for today:

The neurosurgeon called me two minutes early

for a three minute phone call

to tell me Mark needs a fourth surgery

And now I want a fifth of vodka.

Here’s the thing. I don’t actually want a fifth of vodka. I liked the idea of finding something for a five. I couldn’t think of anything else.

Then I shared my poem with Alma, who told me that this would be Mark’s sixth surgery, in their counting.

Adam, Alma’s boyfriend, suggested the first lines could be, The neurosurgeon called me one day/two minutes early.

That’s a good suggestion, right there.

Perhaps this entire post can be one line at a time.

Like a breath in and out.

Today I had Mark at home.

Soon they will take him away from me again.





Breathe in.

And out.

And in.