Coping and Carrying

“Dad said it wouldn’t matter if Matthew died,” Michael told me a few weeks ago. “In front of Matthew?!” I asked. “Yes,” he said.

I had been talking to Michael about damage to the frontal lobe and hard truths of life with Mark. We were discussing some not-great things Mark has said recently. To whit and per the speech therapist’s recommendation, I had been quizzing Mark about his progress with the Alex Trebek autobiography. “I was reading about contestants Alex met on Jeopardy who he felt were significant,” Mark said. “If you were writing your autobiography, what significant people would you include?” I asked. Mark named some people from work. “What about friends or family?” I tried. He couldn’t think of any. “What about any of your wives? Like me?” I joked, probing for which parts of Mark were alert in there. The one that would understand the humor? The one who could volley that one back?

“Time will tell,” he replied.

I thought that was a good response.

Mark is three months out from the big May surgery. When people ask me how he’s doing, sometimes I’ll say “stable terrible,” but mostly I say “stable.” Which is how I perceive it. But also, the above story is included in what stable looks like here. It can’t actually be described as good. Apathy is difficult to cope with, and empathy is critical to live with. Walking would be nice, too. And obviously, no measure of intelligence and maturity in the boys can fix what must break inside them when Mark fails to care about their feelings. Or in Michael’s example, even their life.

We have three more months to wait before the surgeons officially determine if the surgery worked, from a purely technical standpoint. So stable means that, too. The life or death question is unanswered. We don’t know if Mark will continue to heal, or whether things will fall apart again.

Not one to adhere to the stay-off-Google mentality, I continue my quest to understand. Mark’s brain damage is in the locale that created the famous case of Phineas Gage, whose railroad rod-through-the-head accident in the mid 19th century taught neuroscience about the heavy lifting of the frontal lobe. In Phineas’s case, it changed him from a nice, hardworking guy with whom you could happily talk, to a rough dude you’d rather avoid. The frontal lobe is “…vital to the sense of self and others … necessary for healthy interpersonal relationships and decision making …” In other words, the crux of what makes you you.

Mark’s social-emotional-cognitive self needs intervention (speech and occupational therapy, and active engagement with people and the world around him), with the first six months post-surgery the most critical for making improvements. This has been true every time he’s had a medical procedure to his head, but the frequent trips to the OR mean that we haven’t been able to settle into a place of understanding who Mark will be after all this. And to be more conservative, it could take a full year for his brain to find its landing strip, assuming the medical plane does not take off again and reset the clock. In the meantime, I try not to put too much weight on any individual thing Mark says, or how he behaves one day to the next. Here’s how it’s trending right now: Mark’s increasingly removed, living inside his head. His world, small for quite a long time now, seems even smaller. Functional goals the speech therapist and I came up with, alongside Mark, include helping the family keep on schedule and feeding/watering the dogs. Watching the clock is easy for him to do, because he is excellent at perseverating on time. “I’m going to refill the hummingbird feeder in five minutes,” I say. “Keep me honest.” He dutifully gives me updates. “Three minutes to go…two minutes…one minute…” As a bonus, when I return he tells me how long I took to complete the task (four minutes).

He keeps forgetting to feed and water the dogs. And I keep forgetting to remind him.

It’s difficult to find tasks to help Mark feel purposeful in the household. Paying the bills is out, for example. The other day, Mark told me he wants to grow his hair long. How long? “Until I might trip on it.” “How long would that take?” I asked, proving that a teacher can never resist the teachable moment. He shrugged. I persisted. “Hair grows roughly a 1/2 inch per month. You are six feet tall. How long would it take?” “A year and a half,” he said. I tried again. “So, if it grows 1/2 inch a month, it can grow 6 inches in a year. You are six feet tall.”

Mark: “A half year.”

Me: “Are you joking?”

Mark: “I don’t do math anymore.”

When I relay stories like this, inevitably some people insist he must be joking. There’s no way, in their minds, that he can’t be. And sometimes I am not sure, either. In this case, Mark was not joking. His brain was not up to the task. If I asked again the next day, maybe he would be. Maybe not. Sometimes the electrochemical pathways inside his head work, and sometimes they do not.

Mark’s perseveration is on a serious uptick. He obsessively watches the bird feeders. From his position on the couch, he leans forward and looks left to watch the hummingbird feeder out front, sits back for a moment, and then leans forward again and looks right to watch the hummingbird and thistle feeders out back. “Hummingbird,” he exclaims to the room, staring intently at the feeder. Last night at dinner, he kept tally of the day’s hummingbirds as Ben and I talked about mask mandates for college.”27,” he stated. 28…29. Ben and I periodically stopped and affirmed we were listening to his count. Mark passes huge chunks of his day observing the birds, contentedly. At least he’s not Phineas Gage, screaming obscenities at people.

Is his perseveration new-permanent? New-tranistory?

Time will tell.

Stable, adj. (Merriam-Webster): Not changing or fluctuating.

Stable, adj. (The Free Dictionary): Resistant to change of position or condition; not easily moved or disturbed.

Stable, adj. (OED): Fixed or steady; not likely to move, change or fail.

Hmm.. maybe I’m using the wrong adjective.

Predictable? Manageable? A few days ago, I thought Mark’s forehead looked kind of swollen. I grabbed my phone to document it, in case I need a photo for comparison down the road. Did it hurt, I asked. Mark touched his forehead. “How does it feel?” I asked. “Deformed,” he said. I gently felt the mound of quad muscle under his skin, tracing to where it dips down into his temple. Mark ramped up. “I’M NOT GOING TO THE ER! I AM NOT GOING TO THE ER TONIGHT!” I took it as a sign that he might need to go to the ER. I scrolled through my phone looking for a recent photo for comparison. He’s had his head wrapped for long enough that I couldn’t find a clear, straight shot of his forehead. I looked at the photo I had just taken again. Past the mask of belligerence, I thought his skin looked nice and healthy. I decided we could watch and wait. “It’s okay, Mark, I’m not taking you to the ER,” I repeated, until he finally accepted my words as truth.

I like Mark’s wheelchair. I like Mark in the wheelchair. It’s like when your 10 month old baby starts walking and you look at that vulnerable, lurching body with its big soft head and think, well that’s a dumb design. And then you rush to baby-proof the house because what’s in that head is not ready to control that squishy baby body. Mark is safer in the wheelchair. But of course we continue to work towards his return to the walking living. With physical therapy, his quad-that’s-now-a-tricep is getting stronger, but he is still not able to walk safely, unassisted.

And actually, he had been making progress until it all went in a the wrong direction on Wednesday. After a mid-day nap, he swung his legs over the edge of the bed, stood up on top of his shoes, and with a yell fell right over.

As usual, I was right there but couldn’t move fast enough to stop it.

The next morning, Mark couldn’t put any weight on that foot — the foot of his already compromised leg. If the knee being unsafe on a good day is Strike One for safety, the foot injury is Strike Two. He tried to fit his prosthetic that protects his knee from buckling over his ankle, and it won’t fit. Strike Three. Confined to the wheelchair it is, for now.

Mark scooted down the front steps. I loaded the wheelchair into the car, and we headed for speech therapy. After speech, he put up a respectable fight about going to Med Express for an X-ray, but finally caved when I told him the PT wanted it checked for a break. Which I made up, but seemed like something that could transpire. Fortunately, it is just a bad sprain.

Yesterday while the caregiver watched Mark, I pounded my energy into the park on a seven mile hike. As usual, I carried as little as possible. No water, no snack. No field guides or binoculars, even though I spend most of my hikes trying to identify plants and spot birds. The plants stretched toward the sky, and I looked up into the faces of green-headed coneflowers. Stinging nettles bit at my shins while the Sweet William brushed my shoulders. Shiny turtles slide silently into the creek at my passing, and a great egret hunted next to mallards in the wetlands. I picked up a lime-green walnut from the trail, rubbed it in my palm, and took in its citrusy scent. The smell takes me back to my childhood, to the walnut tree in front of the white barn anchoring the apartment complex near my house, my friend Dorothy and I playing in our childhood. A sweetness and sadness reached like late-day sunbeams straight into my heart, right into my belly. There was a twist and a flip. I slipped the walnut into my pocket to accompany me on my journey.

“It seems like all of life is about coping and carrying,” I said to Alma when they were home with Adam last week. We were talking about forks in the road, the choices that we make that carve a new path. Some of them may cause pain in the future, and hopefully we have the skills to cope and the strength to carry that pain. Life chisels away at us, and we work to find the beauty within what remains.

When I got home, I took the walnut out of my pocket and placed it on the kitchen windowsill. I said goodbye to the caregiver, and I asked Ben to watch his dad for five minutes so I could take a shower. Mark was looking out the window at the birds. He would surely be no trouble.

2 thoughts on “Coping and Carrying

  1. I read your posts faithfully… my mom had a brain tumor when I was 30… I help care for her. I just love the words you trail together in describing your experiences. I inevitably cry ever time. Sometimes because I relate and others hoping you have the strength to make today be the best day it can be. That’s one thing my mom’s experiences taught me, is to not let people steal your joy and do all you can to make today be the best it can be… sometime that’s asking a lot. I think of you and your family often… hope today was a good day

    1. Thank you so much for this, and I’m so sorry to hear about your mom. I appreciate you reaching out with encouragement and support! xoxo Diane

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