The Forest and the Trees

The day of Mark’s latest MRI, we drove home from the hospital in silence. His norm. My choice for this particular drive. It was rush hour and we were both hungry, exhausted, and frustrated. A recipe for a fruitless discussion. After a day that had dragged on too long for Mark’s brain to tolerate, culminating in him yelling at a nurse and me crying in a hallway, I was utterly fried. He had had a good scan, but it had been a bad day. And if that doesn’t make sense to you, that I’m glossing over learning that at this milemarker, Mark’s cancer has not reappeared, then I have failed to adequately communicate what my life is like. To be fair, oftentimes I don’t understand my life. The math almost never works in any significant way in our favor. It’s like how science tells us the climate is changing, but given a warm day in November, we all perk up. “At least it’s a nice day!” as the planet melts and burns. Mark’s mobility and cognition are slowly trending up but also vary unexpectedly hour to hour, minute to minute, in critical ways that keep our lives structured completely around his care. Yesterday, for example, Mark suddenly started speaking nonsense sentences to me. Right before that, he had been blowing his nose super hard, and with his tissue-graft-not-skull situation, perhaps he squished his brain a bit from the pressure, I thought. I gave him an Ativan, adjusted my expectations for the day, and kept a closer eye on him.

The good scan/bad day was supposed to go like this: 11:30am MRI, 2:00pm neurosurgeon, 3:15pm ENT surgeon. These two surgeons, rather than an oncologist, continue to lead Mark’s care and would give us the critical information of the day: cancer back in session, or cancer still out. Brain stable, brain going south. Not an easy day to go into for me, for sure. Mark, on the other hand, was fine; he had no idea what the stakes were for this particular trip to the hospital. In the whirlwind of being the patient, this was just another whip around the inside of the funnel.

The MRI went fine, but it was immediately clear from the size and general temperament of the neurosurgery waiting room crowd that we were IN FOR IT. Again. The neurosurgeon operates four days a week (FOUR DAYS A WEEK. On brains. I have a lot to say about that, but I’ll leave it for another day), leaving one office day for him to see every patient under his care. That means that this office is always, always a complete nightmare. We’d never make the ENT appointment. To me, it was critical to make it to both appointments. To Mark, these appointments were just an obstacle to what he wanted: to be back home on the couch. “Let’s just leave,” he said, causing a little pit to form in my stomach. When you have your kite strings tied to highly specialized surgeons who are in charge of keeping you alive, you try to see them at the schedule they suggest. Or maybe that’s just me. I tried to distract Mark. I made conversation with other people in the waiting room. I rolled Mark up to the ENT office to see if they could squeeze him in early, which they could and did. The scan looked good: no sign of cancer, and the free flap (tissue graft) looked healthy. Whew. Then they cleaned out his sinuses — which really I should stop watching — and sent us back to the neurosurgery waiting room, which by then was almost entirely empty. It was 4pm. I was hopeful. They quickly put us into an examination room, where Mark laid down and fell asleep. Forty five minutes later, a resident came and did a quick evaluation. Then we were alone again, left in the kind eerie quiet that in a hospital setting is unsettling. It was after 5pm. “We’ve waited long enough. Let’s go,” Mark said as he climbed off the table and got back in his wheelchair. “Let me try to find someone,” I said and went to look for anyone to help us. A staff area was filled with clinicians working on computers and phones. I lurked around, waiting for an opening to engage that never came. I went back to Mark. I went out and lurked some more. I went back to Mark. Finally, he said forcefully, again, that he was leaving. “Okay,” I said, giving in, too exhausted to fight to stay any longer. As I pushed him down the hallway, Lois, the kind older nurse who has helped us many times, appeared. “Lois, we are leaving. I can’t keep him here any longer,” I said. “Stay,” she said, “The doctor wants to see him.” “I DON’T WANT TO SEE HIM,” Mark yelled. I looked at her for a long moment.”Have at it if you think you can help,” I said, taking a step back from his wheelchair. Lois, God bless her, tried making small talk. She offered Mark a snack. She did a little jig. Literally. Mark, having dipped into a dark and angry place, stayed laser focused on his goal. To leave. “The doctor will see you in a minute,” Lois told Mark. “A MINUTE?” he roared. “UNLIKELY!” She glanced at me. I was tearing up, sniffling under my mask, the stress of the day breaking through. “It will be five or ten minutes, tops” Lois responded. “Yeah RIGHT!” Mark sneered as she strode away. We waited, frozen in our hallway standoff. I was done saying any words to Mark or anyone else. Mark, who usually plays that role, was not done. “IT’S BEEN 10 MINUTES!” Mark yelled into the air three minutes later. Finally, the surgeon appeared before us. He didn’t bother taking Mark into an exam room. He talked quickly. The scan looked good, but he didn’t understand why Mark can’t walk. He looked at me. I shrugged. I LIVE WITH THAT REALITY EVERYDAY, I thought. Maybe there’s arthritis in his neck, he said. Maybe another surgery could help with that? He ordered a skull base/cervical spine MRI and said he’d call us with those results. I let this wash right on over me as I finally pushed Mark towards the exit.

Driving home from the hospital as the daylight drained from the sky, stunned by how badly the day had ended, I let the silence blanket me. It’s exhausting to manage Mark’s entire life, and it’s exhausting to manage him. It was horrifying to watch Mark yell at Lois and to feel like there was nothing I could do. He needed to stay; he didn’t want to. His brain’s best at that moment was pretty darn bad, and it showed. Lois needed him to stay (who knows the pressures on her to keep patients from bailing); she was willing to throw herself into his line of fire to make it happen. I was grateful and ashamed. I felt like I had failed.

On that long drive home, a memory popped into my head of Anya, my oldest, as a child. On the seesaw of childhood, her oversized intellect was balanced by extreme sensitivity to sounds, crowds, and expectations. She was the child who hid under a chair during circle time in preschool. Who hated fireworks and parades. For whom the softer parts of elementary school, like recess, gym, and lunch, were painful parts. She did not fit in, and she expressed that, and that did not make her life easy. I have two favorite photos of Anya from her childhood. In one, she has walked out to the middle of a Wisconsin cornfield, alone, and is standing looking pensively at the summer sky. In the other, she is standing on top of an Indiana campground picnic table under the gloam of a late fall day, solemnly looking at the woods. This is my kid. This is who she has always been, and the fierceness of my love for her aligns with the fierceness of her uniqueness.

I have a lot of specific memories of young Anya being fully herself, but a particularly poignant one is from when she was around eight years old. One of her bottom front adult teeth came in with not enough accompanying gum to keep it safely in place. Gum surgery was ordered. Her dad and I selected the cadaver gum from the limited menu of choices and dutifully filled the prescription for a mellowing pre-surgery medication to be given at home. By the time we arrived at the periodontist office, the medicine had kicked in and Anya was loopy. On the crushed velvet chairs in the waiting room, Anya sat pushing the fabric one direction, then the other. One direction made the fabric color lighter; the other, darker. She started using the colors to write, and we watched as she carefully spelled out “HELP ME” on the fabric. This was not going to go well. Given the choice of flight or fight, when the burly mobile anesthesiologist came for her, Anya chose fight. We listened from the waiting room as he tried to soothe, then explain, then negotiate. I had recently shown the kids the the original Pippi Longstocking movie from 1969, and to our horror, we heard Anya slur out a quote from the movie. “SHUT YOUR DAMN COTTONPICKIN’ MOUTH!” Followed by a salivary wind up, the guttural gathering of the only weapon this little kid had. “DON’T DO IT!” the anesthesiologist warned. “THWOOOT,” we heard as her spit sailed at her target.

I was horrified, listening to my kid flail and fight and suffer. I was also horrified listening to my kid be most likely their worst patient of the week, or month, or year. Definitely of the day.

A week or so later, I brought Anya back for a check up. I was chock full of anxiety about how Anya would behave and what the periodontist would think or say or do. He was, however, relaxed and circumspect. Clearly sensing my tension, he nodded at Anya and said to me, “Enjoy it. It goes by quickly.” While I understood his good intention, I actually felt like he was adding another thing to my parental to-do list. Keep your kid healthy and safe, make sure they behave appropriately in all settings, definitely make sure they don’t spit on doctors, and oh — enjoy the journey! Not this day, doctor. No. Too. Much. If the goal is always to see the forest for the trees, it is not always possible at every moment. And when you can’t see the forest, telling someone to see it doesn’t help them see it. Acknowledging the trees? Much better. Because Lord knows, they are RIGHT THERE.

Driving Mark home from a good scan/bad day, I gave myself the grace to recognize just that. It had been a Very Bad Day. It didn’t matter, in that moment, that Mark’s cancer has not returned. It mattered a lot that I was exhausted, that if I tried to discuss it with Mark he probably wouldn’t remember it anyway, that when we got home I’d have to make him some dinner and do all the other things I do. The trees were thick. It made sense that they were what I could see.

“None of us thought Mark would have made it this far!” the neuropsych doctor told me cheerfully last month. Clearly he thought this would be a shared forest moment. But I didn’t know this. I saw the trees. “Wait, THIS is what your office thought? All the times I asked for and did not get any prognostication, you all HAD ONE?” Tree. Mark yelling at the nurse? Tree. Anya spitting at the anesthesiologist? Tree.

Forest. Trees. Forest. Trees. A little more whiplash in the funnel. Give me a minute to find a way to fly high above and see that forest again.

2 thoughts on “The Forest and the Trees

  1. God, Diane. This struck home with me so hard. You perfectly captured the dichotomy of raising my kid with high-functioning autism. The teachers who judged and lectured me for consistently being late because my child had to try on all his pants to see which smelled just right, the embarrassment of watching while my son turn around in a line at the book fair to chastise another small child for burping (he hated burps and thought the smell of them would stick to him) in front of his mother who glared at me and scolded him for me, the agony of realizing he was no longer invited to birthday parties or play dates or much of anything. On and on. I wish people could see what I see, a sweet, loving child who tries as hard as his neurology will allow. Yesterday, he was accepted to Pitt. He gave me a hug when he got the email. Today I am reaping the benefits of all my fierce work to advocate for him, but the journey here was long and hard and often painful and there were times when I hated what was on my plate and I resented the parents who had the football star, the social butterfly, the over-achiever and I especially hated when people told me “I’m sure they have their problems too, you just can’t see them”. No I couldn’t see them, thank you very much, and that was the problem for me because lots of people could see mine. Anyway, thank you for allowing me this insight. It was a gift.

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