Mark: From A to Z

When I arrived on Friday morning, Mark was locked inside his bed-cage, naked except for underwear, wild-eyed and yelling at the sitter who he was convinced was employed by his former company to keep him entrapped. “Diane!” he yelled, his voice ripped with anger. “How are you doing, Mark?” I asked calmly. “I’M BEING KEPT HERE BY THIS IDIOT RPCO JERK,” he yelled, pointing at the quiet young woman sitting in a chair. RPCO was a department at Bettis that he worked in. “Can I let him out?” I asked the sitter. She said yes. I unzipped the side of the bed tent. He was naked because he was refusing to wear hospital clothes. The sitter and I helped him get into street clothes I had brought, all the while with him protesting our help. I could see that his leg drains were still intact, thankfully. Overnight, he had pulled out the top four staples from his neck. There’s nine more still in place.

Within a couple minutes, the occupational therapist, accompanied by two support people, arrived for Mark’s first therapy of the day. He was having none of it.

“What’s your name?” the OT asked him.


“Okay,” she said calmly. “Who is this with you?” she pointed at me.


“How many kids do you have,” she tried.

“COULD BE ANYTHING FROM 0 TO 500!” he roared.

I looked at the OT. This is a new one, I said, bewildered. He’s never done these extremes.

He did an excellent job of continuing to refuse treatment by creatively using words that began with an A and a Z. The sitter’s name could have been Aardvark or Zebra. The road we live on could be Annapolis or Zelopolopolis. “Drive,” he added to that one after a beat.

He did the same routine with speech therapy.

By the time PT came in, he had worn himself out enough that while still being belligerent, he at least complied with taking a walk. This took three staff people: two PTs on either side, and the sitter following right behind with a wheelchair in case Mark collapsed. I trailed along to watch. Mark is basically relearning how to walk.

After the therapies, I asked Mark if he wanted to look out his window with me. He paddled his wheelchair over. Mercy Hospital sits high on a hill. Mark’s corner room faces east/southeast and has a spectacular view of the Mon River, the Southside Flats and the Southside Slopes. There’s a lot to watch. Road traffic, coal barges, and kayakers. Freight trains and plane contrails. The mountainside is lush, the bridges are beautiful. If it was a hotel room, it would be thrilling.

We talked about the things we were seeing. We talked about Kennywood. He persisted in thinking he was being trapped at work, and specifically in a two year placement in Newport News, Virginia, which he really had taken in the early 2000’s. He kept asking me who was in the office. He referred to the rehab staff as “upper level administration.” I’m writing this on Sunday morning, and Mark still thinks I’m commuting five hours back and forth from Pittsburgh everyday to see him. It took me a whole day to figure out that part of his confusion about where he is is that the second window in his room overlooks construction of a new hospital building. He thinks it’s the shipyard. He points out where new fuel cell equipment is being built. Sometimes, if it feels like he is not as agitated, I remind him we are in Pittsburgh in a rehab hospital. “I keep getting confused,” he says. It’s okay, I reply. You’ll get better.

And then without warning, he will switch back to the shipyard. Back to agitation. “Where are my shoes?! Give me my shoes! These idiots are keeping them from me!”

This is the nature of Mark’s frontal lobe injury. His personality swings, he is impulsive, he is not himself. And then he is. And then again gone. He’s refusing to take meds from the nurse, because “I’m not taking anything from Newport News!” I can calmly say, hey Mark, it’s time for me to give you your meds. He will take them from me. Sometimes only after I verify that I did not get the meds from Newport News.

It’s all very disturbing, and I mean to him and to me. I can see, in his state, how he is feeling like he’s been tricked. Why he feels trapped. He is constantly being watched. He is being given tests and he can’t fully understand why or the results. He is in a locked unit and cannot get out.

At the heart of it, he is deeply confused. He is deeply afraid. And he just wants to go home.

I have no news on when that will be. The rehab staff are still getting to know him and working on a treatment plan. Everyday I go in not knowing what it will be like. I am not confused. I am a little afraid. And I am deeply exhausted.

Intermittent Agitation

This is how Mark’s behavior is categorized at the change of any shift. To the new nurse, the new sitter, the new nurse’s aide. “He has intermittent agitation.” This reminds me of teacher-speak for when you try to carefully explain to a parent that a kid is having a hard time. For Mark, it’s code for “keep your eyes on this one. It can come out of nowhere and be intense.”

Still, over the last couple days, they’ve been able to remove Mark’s mitts (the ones that look like boxing gloves) while keeping the “soft restraints” on. These include a vest which is strapped to the bed and canvas ties that are on 3/4 of his limbs (the doctors would not allow his incised leg to be tied down, for obvious reasons). He’s had greater periods of calm and rest. And then sometimes, something switches in his brain and the fight or flight response kicks in.

Last night, Mark was moved to what is actually the third hospital he’s be in since his surgery. His surgery was at Presby, his ICU step-down unit was in Montefiore (attached by sky bridge to Presby), and last night he was moved to a traumatic brain injury rehab unit at Mercy Hospital. Each one of these changes, for the delirium-minded patient like Mark, creates a resurgence of confusion and agitation. He will need a few days, most likely, to return to the baseline he left behind at Montefiore. And then hopefully he will climb up from there. Because as he is, there’s no way I could handle him at home.

I tried to go visit Mark at Mercy last night, but the ambulance transport turned out to be three hours late. That landed him at the new hospital after visiting hours. I drove home. A couple hours laters, we talked by phone. He was, I would say in teacher-speak, “activated.” “These people are morons!” he yelled. “They are making me stay at Bettis all night!” “I’m leaving at 3am!” You’ll have PT tomorrow, I said, to help you get stronger so you can be safe when you come home. “I’m not doing it!” he roared.

The nurse called me an hour later. They already had called security to come talk to him once. They legally cannot restrain him in the same way they can outside of a rehab unit. So now, he is in no direct restraints. Instead, they have him in the completely-ridiculously-named “canopy bed.” This is like a mesh tent they put over and attach to the bed. So, like a cloth cage. He’s unrestrained in there, but he at least can’t get out of bed which at this point with his tiny legs and buckling knees, would be devastating. I told the nurse that the chance he’ll pull out his leg drains is probably about 100%. “He’s already been going after them,” she said.

He did get one staple out of his neck already.

Last night I had a dream that I was driving a car in the dark. All of a sudden it felt like the car was driving on Vaseline. I couldn’t see anything as I slid and slid. I could hear the car going off the road, hitting brush, before finally coming to a stop in the woods.

I was not injured.

I was also not fine.

Running on Empty

We are at rock bottom. Mark is delirious. Not the funny kind, although his wry wit still pops out from time to time. He’s hallucinating. He’s disoriented. He’s agitated. He’s worse than I have ever seen him. It’s utterly fatiguing and extremely sad.

The surgeons insist on not sedating Mark unless absolutely necessary, as they continue to manage the precarious healing from this surgery. Even with a 24/7 room sitter, Mark is battling for escape. He is wired. Perseverating on getting everything off of him. Yesterday, it took two to four of us to manage him, trying to distract him and prevent him from hurting himself. He is surprisingly fast, flexible, and strong. He was physically fighting us 90% of time that I was visiting. For all that he sleeps at home, I can not believe he is not sleeping more. For all that he sits at home, I can not believe that he can find this kind of power. As he was struggling to sit up for the nth time, the aide said, “You must have a six pack, Mark, with all this abs work you’re doing!” Mark, mishearing, replied, “I have so many odds, I’m even!” And kept fighting her to get up. Earlier in the day, he kicked an aide in the head, leading to his last free body parts, his legs, to be restrained. He tried to bite his mitts off. He wrapped his legs together and managed to pop off a drain bulb, spraying the aide with blood. She was incredibly steady and said, “You got your blood on me, Mark, that’s not nice.” He looked at her, wild-eyed, and said, “Hehehehehe!” I said, “Use your power for good, Mark,” and he cried back, “Evil!” He was out of his freakin’ mind. He kept calling out for help. He kept telling nurses he was being picked on. He told us that he was going to take us to court, and that the judge would put us in jail for six months for what we were doing to him.

I am numb and feel like I am running a daily physical marathon. My muscles are tired. I have only one focus, and that’s to keep going. It’s ugly right now. Keep going…keep going…keep going….

When I checked into the hospital today, the staff person put my visitor’s bracelet on my wrist and said, “This gets you half-off drinks during happy hour. All the rides are running, and the swimming pool is open.” It took me a minute to open up my thinking to process the quiet humor. “That’s good,” I replied, “I can go there in my mind.” “Good,” he said, and waved me through to live another day just like yesterday.

No Pressure

TW: Graphic photo

Mark is back to his post-surgery antics. Insisting on getting up despite every effort to distract and dissuade him. He’s got a torso restraint as well as mitts and hand restraints. He pulled out an IV line. That wasn’t a big deal. Then he pulled out one of two tubes in his nose, which are there to provide support to the graft. When his nurse saw that he had pulled it out, she closed her eyes and took deep breaths, placed an urgent call to neurosurgery, and started to cry. I told her it was okay and he’s a really hard patient. She told me that she’s never seen a patient on their unit with as many tubes and drains as he has.

Mark is defiant and also out of his mind. During the pre-op appointment with neurosurgery, I told the doctor that I was prepared for Mark to have delirium again. “Oh, without a doubt he will have delirium,: he replied. Yesterday Mark told me he had to get out of bed because it was time to pick up the boys. “Where are they?” I asked. “At Pizza Hut,” he said. “I’ll get them,” I said. “I want to get them,” he said, and continued to try to problem-solve his restraints. When I left, I told Mark to be good. “No,” he replied. “I’m going to be bad. BAAAAD.” You just have to laugh, or you’ll cry. (Also, they have a dedicated 24/7 one-on-one sitter with him now.)

I took a photo of Mark’s neck that provides an ironic lens for what it’s like to be taking care of Mark right now. This was an easy pick, this photo. What is not pictured is this: they incised nearly 3/4 of his head. Take your finger and trace from your throat to your left ear. Then take your finger and trace from below your right ear to where your right ear meets your temple. That is the only part of Mark’ head that they did not cut open. Everything else is sutured and stapled, drains sticking out, a tissue graft covered. He’s speckled with blood spatter. There are tiny blue threads sticking out of one cheek from sutures inside his mouth, where another incision was made. Then there’s the severely bruised right arm where the arterial line was placed. And his PICC line. And his incised thigh.

And he fights, and fights.

No pressure.

Medical Update

Read at your own risk.

All went well and according to plan. Mark was taken back for surgery at 5:00am, the surgery ended at 8pm, and I got to see him in the ICU at 9pm. I stayed for only about 15 minutes (it was past visiting hours). I’ll go back at 9am today.

Mark’s on a ventilator and sedated. They are going to keep him that way for a few days. He’s being monitored in every way possible, including some new things we haven’t experienced before such as an arterial doppler implanted in his neck to track the function of his blood vessels. The nurse and neurosurgery team are also using a hand-held doppler to check the blood vessels in his neck and head regularly. The doppler reminds me of being pregnant and marveling during ultrasounds at the sound of my baby’s heartbeat broadcast into the air, the comforting confirmation of the steady functioning of the hidden life within.

Mark’s face is quite swollen from the trauma of surgery, and in addition to that his forehead is an entirely different shape. It would not be completely inaccurate to say it looks like something Steven Spielberg might come up with. The muscle tissue they took from his thigh is tucked in there. However, imagine that you made an empanada and overstuffed it. The dough can only stretch so far as you try to close it. Mark’s skin, having been cut open so many times there and also having been radiated, doesn’t have the flexibility that would be optimal for this super-not-optimal situation. So they couldn’t fully close it. They took a little skin from his thigh to patch it a bit, and then left some of his incision not closed. It’s packed, and they haven’t decided what to do with that yet. They left his forehead skin intact, which means he still has that open burr hole. “It’ll be bleeding,” the neurosurgeon warned me in the post-op conversation, “but that’s good because it allows an escape point for blood that would otherwise pool.” The new patch of healthy muscle underneath should help the hole heal.

I’ll go back to the beginning. All went fine. I’m okay. One day at a time is reduced to one hour at a time, one minute at a time. His greatest risk is blood clots as the pieced-together blood vessels figure out how to heal. He’s exactly where he needs to be: in the secure world of the ICU.


“Nine and a half hours,” Mark said on the drive home from his pre-op appointments on Wednesday, “that wasn’t so bad.” He had accepted using a wheelchair throughout his day of usual pre-op stuff: CT scan, bloodwork, meeting with anesthesiology and surgeons.

Here’s what I learned from the day: Mark’s surgery will be within a range of 5 and 24 hrs long, according to the anesthesiology PA, neurosurgery resident and neurosurgeon. The neuro resident said the piece of the muscle they’ll take from Mark’s thigh will be “like this,” holding his hands apart about the distance of a nice-sized pepperoni roll. “It will?!” I yelped. “Well,” he moved his hands closer together, “it will shrink down. Watch my hands, they’ll keep getting closer together.” I wasn’t sure if this was like a magician trying to distract you away from the trick, or this guy backpedalling fast so as not to alarm the tired crazy lady. The chance of blood clots after the surgery is in the range of 5-15%, according to the plastic surgeon and the neurosurgeon. “If the blood vessels fail,” the neurosurgery resident said, “The whole thing will die.” “This is a big one,” the neurosurgeon said to Mark, “but it’s got to be done.”

Mark heaved in several waiting rooms, tears running down his face as he tried to hold back from vomiting. I’m sure he was terrifying to the other patients waiting for their tests. Everytime he put pressure into his head by vomiting, the burr hole wound would fill up with some blood-like fluid. An hour later, like a tidal pool, it would receded.

Mark was quiet throughout the day. I had some good conversations. The anesthesiology nurse and his wife were robbed in NYC and now only wear rubber rings with various fun insignias. That was his explanation when I pointed out that he was married to both Jesus and the Steelers which I found kinda Pittsburgh-perfect. After waiting two hours in the neurosurgery waiting room, I approached the front desk. Mark had just said to me,”So you about ready to blow outta here?” I implored them to put him in a room. “If he can just lay down,” I said, “I think he’ll be okay.” They found an empty exam room and brought him a blanket. I turned off the lights so he could sleep. Later, when he’d woken up and we walked to the bathroom, we ran into Lois. Lois is the nurse that sat with us while Mark had his spinal tap months ago. After his ER visit last week, she called me to give me an update about the upcoming surgery. “I’ve been so worried about Mark,” she said. Which is both what you want to hear and don’t want to hear from the lady who’s been working in neurosurgery for her entire career. Lois leaned towards me in the hallway and whispered, “I moved you up” in the appt queue. The blessings of being a frequent flyer are not none. They may only be .001% above none, but they are there, nevertheless.

Last night, I had the hard conversations with Mark. “If you end up on a breathing machine, what do you want?” “Death,” he said. “If you end up paralyzed, what do you want?” “I hadn’t thought about that,” he said. “I can take it,” I said. “We can sit here together. I’ll take care of you, no matter what.” He said he had to think about it.

It wasn’t a bad day. It was a long day. We were both tired. He was unsteady on his feet. I held his hand, and we walked to our bedroom together.

The Thwack

I read and appreciate every text, every comment, every Facebook message, every email, every card. If our situation was a stewpot, we are at the place where the ladle can’t get one more full serving. We are scraping the bottom. I am both okay and not. I am calm and frenzied. I am sure of our path and actively pounding my internal brakes against it. I have stark facts I understand and complete uncertainty in most areas. I need, we need, a lot right now. I can put my finger on none of it.

This is what I know. Mark’s surgery will be Thursday at 7am. I keep checking and rechecking my math, but one stark fact is this: his surgery should be completed between10pm – 12am. Every two hours, I will be allowed to ask for an update. The update will be: everything is going according to plan. Unless something is wrong. Then I will get called in to talk to the surgeons in between the two hour vacuous check-ins. I will want to leave the hospital during the day, to get sun on my face and take a walk. I will be afraid that by doing that, I’ll miss some critical update from a surgeon. I will become very still and very isolated. It will feel like when I gave birth to each of my kids. I closed my eyes, went deep inside my brain, and rode the waves of contractions for hours.

If I was a pinball, I’d be entering the ramp down to the flipper. I’d have bounced and bounced and bounced against bumpers, racking up points in an unknowable game. Sliding down the chute, the strange hope is that I’ll get that solid thwack. To not get it is to lose it all.

I am not a metal pinball. I am flesh and consciousness. No matter the outcome, this is going to hurt.

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.