I’m lying next to Mark in bed. It’s the middle of a hot summer afternoon. Mark’s shirt is off, and I’m considering his stubborn body, the body that has taken so much and keeps going. There are various portals, now sealed. The small puncture in his abdomen where the feeding tube brought him back from the grip of death in the winter of 2020. The scar on his throat where a trach brought oxygen to his lungs and removed pressure from his skull graft in the summer of 2020. There is the scar draped across his head, ear to ear; the line they drew once and then used as their guide for multiple returns into his skull and brain. The scars on his leg and scalp from drains. The 18-inch scar on his leg from the harvested quad muscle in the spring of 2021.
“You didn’t really say too much about your feelings,” Kim told me after reading my last post. “But that makes sense,” she quickly added, “you had a lot of information to convey.”
She’s right. I’m not living in my emotional life right now. Sometimes I can, and at those times I do. Sometimes my emotions are a safe space, a gentle summer air current keeping a butterfly aloft. Sometimes they are as rough as the velcro strips holding Mark’s leg brace firmly in place. Any tug could cause a dislodging that feels like it would be a catastrophe.
My Mark is gone again, and as usual it happened suddenly, without warning. Now he lives in a state that is seemingly a combination of brain damage and drug haze, and the line between the two is dashed and wonky. A weaving of brain tissue, electricity and chemicals that feels more soup than solid.
My Mark is gone again, and it happened in a flash.
I feel alone.
I have decisions to make, the worst kind of decisions, while taking care of a Mark that can turn on a dime, wake up on a lark, forget that he uses a wheelchair again, and head down the steps. “Where are you going?” I ask. He doesn’t know. He can’t answer. He doesn’t answer.
I have no idea how to make these decisions. They are: keep Mark on the medications and therefore keep the seizures as controlled as possible; take him off the sledgehammer medications so that he’s more alert in his life; consider surgery to treat the epilepsy.
When I do the math, which I am doing in an endless mental loop everyday, I always come up with this: No Good Decision.
Mark does not have a terminal diagnosis. He is alive and living with a complement of disorders, diseases, syndromes.
“Do you know what ‘chronic small vessel ischemic disease’ is?” my friend Tory asked. I had sent Tory screenshots of a scan report from after Mark’s seizure and fall two weeks ago. I did know, but only because I had looked it up. Has any doctor told me Mark had this chronic disease? Nope. Not one, ever. Did I dwell on this for a second? Nope. I moved on. What did I need to understand about it? It’s a precursor to dementia and strokes. Info received; move on, Diane, move on.
As I said, I’m not living in my emotions. Which is clearly a short-term strategy that will not hold up long-term. There’s a lot to feel about the current reality. Is the Mark I’ve had for the last nine months, quite mentally recovered, present, funny, connected, kind, loving, gone for good this time? Are there ways to uncover the layers of medication fog safely, to see what Mark is under there? Who can help me answer those questions? Who can help me figure it out?
See, I’ve gone from emotion to labor, once again. Task, task, task.
I’m sad. I can tell you that. I’m tired, at three years into this. “I wish so very much for a dollop of joy to land in your lap,” Kim texted me yesterday. Very unlikely, I replied. I can’t even envision what form joy could take. What would joy even look like right now?
Luckily the work is ample. I simply navigate through my days moving in tandem with Mark’s whims. He’ll suddenly put on his baseball cap and shoes. “What’s next?” I’ll ask. He may or may not answer me, and then I just follow him wherever he rolls.
Someday I may be the driver in my own life again. I sure hope so. For now, I navigate the ribboned stream of leading and following, not quite sure where we are going or who is actually in charge. The line, the path, extends to the horizon.
“What time is it?” Mark asked this afternoon, waking up from a nap. Two hours earlier, we had come home from a long morning at the hospital, where Mark had a Functional MRI scan.
“It’s two o’clock,” I said, glancing at the living room clock fully within his view.
“In the morning or afternoon?” he asked. The midday sun was hazy behind summer storm clouds.
“Afternoon,” I replied. “What time does it feel like to you?”
“7:30 in the afternoon.” He eyes were steadily holding mine.
“Ummm…there is no 7:30 in the afternoon,” I said, “There’s morning or evening.”
“There is a 7:30 in the afternoon,” he insisted.
“Okay. 7:30 is when you go to bed. Do you feel like it’s bedtime?”
“Okay,” I said. “Do you want to go to bed?”
Mark shifted his weight and climbed into his wheelchair. He slowly pivoted and headed down the hallway. I waited until he passed the thermostat, then went back to check it. Mark is now changing the thermostat many times a day – every time he passes it – and always in a way that makes no sense. It was over 90℉ outside, and I had the air conditioning set to 78℉. He reset the thermostat to 71℉ and switched it from air conditioning to heat. After I adjusted it back, I followed him to our bedroom where he took off his sweatshirt because he was too warm.
“Good night,” he said.
“Night night,” I said. “You look handsome.”
“I am handsome,” he said, placing his hand on my arm and falling immediately asleep.
This is what life has been like – the wheelchair, increased confusion, disorientation – since a spate of seizures and a fall 10 days ago.
Weeks ago – three? Four? – Mark’s seizures ramped up, particularly while sleeping. I only recognized that he was having seizures because during his stay in the Epilepsy Monitoring Unit in March, I learned their particular clinical presentation. The kind of sleepytime twitches you and I might have – the startle of your arm or leg muscles, a quiver of the chin, the licking of your lips, a snorty snore – all can be evidence of Mark actively seizing. He started showing these signs frequently during naps and in the night. Sometimes they were fleeting but more so they started to persist, lasting 10, 20, 30 minutes.
If you have experience with seizures, you know that when a seizure lasts longer than five minutes, it can be considered a medical emergency. But what I also have learned is that Mark’s seizures are fairly out of control, and running to the ER everytime is useless. And we can’t live at the hospital. Mark is now considered to have status epilepticus. That’s when you have drug-resistant seizures that come and stay too long for their visit: a firework explosion of electricity in the brain that can create a chain reaction of other explosions. In Mark’s case, the seizures tend to start at a focal point in his left or right (but mostly left) frontal lobe. Where they go from there, and their severity and impact, can vary. The origin of the seizures is the radiation scarring (mostly) which, as Mark’s neurosurgeon said, is “fuel for seizures.”
In May, the medical board determined that Mark was not a candidate for brain surgery to scoop out the bad brain real estate. I was not disappointed to hear this. That surgery was a scary prospect, and I was not looking forward to the responsibility of deciding whether to proceed. Calling to give me that news, the epileptologist added a nighttime sedative to try to reduce Mark’s seizures. She said maybe there would be “a miracle,” and it would help.
I don’t know about you, but I am not a big fan of doctors talking about miracles.
The sedative did, actually, reduce Mark’s seizures for about a week. Then his seizures-while-sleeping resumed, and with a vengeance. Three, four nights a week, and often during his naps, I would watch and wonder what I should or could even do. I emailed the doctor for more ideas, more help. I picked up the prescription I had avoided buying – the epilepsy rescue nasal spray that costs $564 for a one month supply. This is a benzodiazepine, a tranquilizer and a scheduled drug. Essentially, if Mark’s brain was a raging fire, this was a bigger bucket of water to put it out. Mark was already on another benzo, and the pharmacist would not release the nasal spray to me until I explained why I was picking up a second one. (“Ask his doctor!” is what I wanted to say, but didn’t.)
When I got it home and read the teeny, tiny print on the medication, I found that the maximum you can give it is once every three days for a maximum of five doses per month.
My reaction was to laugh at the absurdity of this. The expense. The infrequency with which I could even give it to Mark.
Still, I waited until there was a night where I felt very, very confident that I was observing seizures, and then I sprayed it up Mark’s nose. Sure enough, the seizures stopped.
The problem was, the next night he had them again. So the medicine helped, but just for that single instance. Therefore, most days the seizures would keep propagating on their merry way while I could do nothing. How was that worth $564/month?
Ten days ago, I woke up at 1am to a thump and found Mark seizing on the floor in the dark hallway. He had gone through a good spell of making it through the night in bed, but had recently restarted his nighttime ramblings from bed to couch. He must have been making that journey when the seizure hit. He was conscious and was trying to stand up but his legs swayed like a landlubber at sea. I guided him down to the floor. After a few minutes, he wanted to try to stand, and again could not. After a while, we eventually made it to the couch.
The next morning, Mark’s left knee was the size of a cantaloupe and he could barely walk. A triangle of upper arm skin was hanging off. He was confused in a post-seizure way. He had fallen harder than I realized. Still, I decided to wait and see what was needed.
24 hours later, I decided it was the ER.
It was a zoo at Presby. The ER was full. The hospital was full. The waiting room was full. Gurneys lined the hallways. We were brought back for an assessment. “Mark had a seizure and fell and is not making sense and he doesn’t have all his skull,” was my run-on sentence that did the trick and got him an ER room. All true, of course, and yet I somehow still felt guilty.
Seven hours and xrays, CT scans, blood work and one cervical color later, everything came back okay. Nothing catastrophic had caused the seizure. No hidden brain tumor, no frightening blood levels. Nothing terrible resulted. No broken bones, they said, and no cerebral hemorrhage. Follow up with neuro and the PCP.
I began chasing the next steps. For the knee situation, I contacted Mark’s PT. “Which knee?” Phil asked. Of course, as things go, it’s the one that provided the tissue for his skull graft last year. Phil said based on Mark’s unique leg situation, to start with the plastic surgeon who performed that part of surgery. I contacted the plastic surgeon, who told me to start with an orthopaedic surgeon. The orthopaedic surgeon said to get an MRI. Which showed, contradictory to the x-ray, that Mark had fractured his kneecap. Fortunately, it was non-displaced. No surgery needed. Four to six weeks of no weight on it and keeping it straight in a brace, the ortho said.
For the brain problem, I contacted the epileptologist. She added a second dose of the sedative. “He’ll be more sleepy, but maybe that’s for the best.”
Since then, Mark has been what I’d call “out to lunch.” Maybe out to dinner and breakfast, too. This is either because the additional sedative is taxing him that much more, or because these seizures are taking, as his neurosurgeon said happens with seizures, “a cumulative toll.” The only way to discern which it is would be to reduce his seizure meds and see if his cognition improves, but that is a zero-sum game. It’s not worth the risk.
And thus, here we are. Over the course of a day or two, Mark changed in ways significant to his life and to ours. Matthew, who had gone to a national speech and debate competition in Louisville and missed this eventful week, came home to his dad back in a wheelchair, sleeping even more, and making very little sense. As usual, he and his brother took it in quietly. I continue to not really know how they integrate all this.
Mark now has very little short term memory. I can tell him three times between 7-8am what the morning holds, and by the time he’s in the car with me headed to an appointment or daycare, it’s gone. “Where are we going?” he asks. “The hospital,” I might say. “Why are we going there?” he responds.
Mark is being compliant about using his wheelchair, until he forgets why he is using it. I speak slowly, clearly, and loudly. “YOU BROKE YOUR KNEE CAP. YOU NEED TO NOT WALK FOR A MONTH SO THAT THE PIECES OF YOUR KNEE CAP STAY TOGETHER TO HEAL.” He looks at me blankly. “But I want to walk.” I explain again. “I’m going to walk,” he replies, hobbling to a standing position.
All I can do is hover in case disaster happens – another fall, which could hurt him in a myriad of ways including displacing that knee cap which would require surgery.
This is for sure a setback. Mark’s been working to recover use of this particular leg for an entire year. And while I was always fond of the safety the wheelchair provided amid the utterly chaotic feeling of everything being unsafe related to Mark, him riding around in it means he’s moving towards weakness rather than strength.
As Mark hates to hear me say, it is what it is.
Back to Mark’s brain for a moment. In the phone call where the epileptologist told me that brain surgery was off the table and that “a miracle” would be helpful, she said we were at a deadend for options. No medicines could stop the seizures, and this surgery was a no-go. We hung up. I had a very few minutes to process this news before she called me back, perky-voiced and with another idea. “You know, there’s a device that’s relatively new that can be implanted in the brain to detect and short circuit seizures. It’s sort of a pacemaker, but for the brain. Maybe that is a possibility.” She wondered if I was interested in exploring this.
It was about 5 o’clock, and I was talking to her from my back patio while watching a rose-breasted grosbeak at my feeder – my first time seeing one in my backyard. My elation at seeing the grosbeak collided with being flummoxed by her sudden change of plans. I mean, this was her field. Could she have thought about all the options before that first “there are no options” phone call? Having been through so much with Mark, though, this struck me as somehow predictably hilarious. “Sure!” I said, suppressing a gulp of laughter.
At some point, we will exhaust the options. For now, I continue to not be satisfied with letting Mark seize his way through the rest of his life. Not if there’s still a solution to consider. Mark is now in the queue to meet with an epilepsy neurosurgeon. That appointment is next week. Mark’s gotten all the scans needed for the doctor to make an informed decision about whether Mark is a surgical candidate. Meanwhile, I’ve done my homework. I’ve read copiously about radiation scarring, cluster seizures, drug resistant seizures, long term effects of seizures and long term effects of medications. I’ve watched educational videos, including one forty-minute surgical instruction video for the exact surgery for which Mark is being assessed. I do not recommend this video unless you are curious as to why I was really confused as to whether the instructor was using an actual severed head for his lesson. The modeling was very good. The drilling of boreholes was disturbing. The offhanded suggestion to the surgical residents to be careful not to tear the dura made a lot of sense.
I know, everyone. This is a lot. It is upsetting. I’m doing my best. I understood that we were in a nice run of time where things were stable. Stable-ish. I assumed they could not stay that way; that just does not seem to be the way Mark works, or the human body, or life. I’m taking it a day at a time, and I’m intimately familiar with that strategy. My world had grown a tiny bit for quite a few months, and I lived the heck out of that. Well, as much as I could. I could sit on the porch sometimes and trust Mark was okay inside. I did a little gardening. I had a few dinners out with friends. I took a lot of hikes and bike rides. Now I’m back to hovering, trusting the boys less with this big job (which is to keep the stress off them, not that they couldn’t do this) of caring for Mark. To compound things, this change in his status comes at the point at which I’m preparing to go back to work in a couple months, making planning all that more challenging. Let alone the emotional component.
I’ve been writing this in bed next to Mark. It’s now 5:30pm, and Mark still has his hand on my arm. He’s been showing signs of seizures for a while now, and I just made the decision to give him the last dose of the seizure rescue medicine that he can have this month. I don’t know whether it makes sense to buy it again. I don’t know whether Mark will sleep through the night or get up in an hour or two or five, unsteady and confused, needing support.
At this very moment, I promise that I feel okay even though things are really not okay. It is not easy, and that is not new. Is there a cumulative effect of all this on me? For sure. Somedays I feel it, and somewhere down the road I will reflect on it all more deeply. For now, I keep in mind Eckhart Tolle: “The present moment is all you ever have.” And I continue to navigate this path. I am thinking of an Ani DiFranco song:
…. both hands
Now use both hands
Oh, no don’t close your eyes
I am writing
Graffiti on your body
I am drawing the story of
How hard we tried
We keep going. I am holding onto tight. To me, and to Mark. With both hands.
Mathew, the baby of the family, turned seventeen last week. The day before his birthday, I reminded Mark that we still needed to buy Matthew a card. “Oh yes!” he replied enthusiastically, “Let’s do it tomorrow.”
At noon the next day, I carefully said this: “Would you like to go shopping for Matthew’s birthday card before lunch or after lunch?” Every parent will recognize this sentence construction, as will every caregiver to someone with dementia. These two things are happening. The freedom offered is limited to the order of events. This strategy works with Mark quite often.
Not this day.
“You can go,” he said, glancing up from the Sunday Times. He had been reading for hours, sustaining attention at a level that indicated more perseveration than interest.
The boys were not home to watch Mark, so the only option was to run the errand together. “Well, I don’t want to leave you home alone because of your seizures.” I kept my tone friendly and even.
“It doesn’t matter.” Mark turned back to the newspaper. I knew better than to pursue it. Whatever circuitry normally keeps Mark’s fatherly love intact was temporarily disconnected. Matthew’s card would remain unpurchased.
Despite all I’ve learned about Mark’s medical conditions over the past three years, if a doctor scheduled a dry two hour long public PowerPoint lecture on his case, I’d still feel the driving need to attend. In other words, I get it and I don’t. Brain circuits turn on and off, terrifying problems wane and then evolve into new potentially catastrophic concerns. My friend Janet’s voice from three years ago echoes in my head: “Once you get on the conveyor belt, you never get off.” She was so right. That conveyor belt continues to the vanishing point on the horizon.
For the past few months I’ve had writer’s block. What was there to say that hadn’t been said? This journey would go on, it would have ups and downs, the details would shift and anyway, did the details even matter? Overall, Mark was happy. “Every day I exceed my life expectancy,” he mused. No one could argue with that.
Pleased with his happiness and a miraculous timespan when the medical world took a backseat, my head grew tired of the mining for understanding and meaning. I turned off the microscope and lived within the daily realities rather than continually manipulating the lens to try to clarify the view. I relished solitary winter hikes, endless hours of staring at gray skies and even grayer trees, the ebb and flow of kids coming and going for holidays, napping at all hours with Mark curled up asleep next to me.
Nothing was wrong.
Nothing was really quite right, either.
Eventually, I started pouring my documentarian urges into social media. It required less energy than writing, and I appreciated exploring visual story-telling. I began posting in earnest to the big two, Instagram and Facebook. I realized that recording elements of my days felt like bringing people along with me. I posted photos and videos of taking Mark out to lunch, to PT, to hospital appointments. I documented plants and muskrats and meditations on flowing water. I felt less alone in my love for and worry about Mark. Others bore witness. Our family. My kids. Old friends. New friends. Strangers.
I followed posts of other caregivers managing loved ones with dementia, traumatic brain injury, cancer, etc. The Meta-verse swelled to a net positive for me, this virtual world that understandably is often demonized as life-sucking. But in my world of near complete isolation, social media provided me with figurative windows that became literal doorways. The common language developed through unique experiences was connecting, in a life that felt completely disconnected from anything I had ever understood as “normal.” The words of these strangers made sense.
I love her more today than I ever have before.
I don’t know how to get through today.
Every bit of exhaustion is worth it to have these memories together.
My sitter called off and I’m going to lose my mind.
I wouldn’t choose it any other way.
I miss my husband.
There are good things about this life.
I miss me.
The caregiving crowd deeply understands “one day at a time,” bravely sharing the utter exhaustion, chaos, fear, loneliness, worry, and melancholy that accompanies every little good thing we somehow manage to snatch from the very thin air.
Early in 2022, while I was busy watching snow fall between naps, the medical focus on Mark slowly transitioned from cancer and tippiness to his propensity to be seizurey. While no one uses the word remission yet and he’s still tippy (but much less so), Mark’s seizures have ramped up. In fact, he’s had seizures every day for the past three days. The past two nights, I laid awake and watched his sleeping body, his face, hands, arms and legs twitching for many minutes at a time as the seizures came in clusters. This morning while reading the paper, Mark started spewing random words. I sat next to him. “Are you okay?” He smiled back at me and nodded. “I’m making you eggs,” I said, apropos of nothing. He nodded again and went back to reading.
It’s easy when talking about disease and treatment to tack on “the worst!” Cancer is the worst! Chemo is the worst! Radiation is the worst! Dementia is the worst! I’m not into competitive suffering; I think each and every one of these things are THE WORST. So to give seizures their due, I declare them to be THE WORST and will address them directly.
First, Seizures, a little warning would be nice. Or maybe a schedule. You can come between 4-5pm on Mondays and Fridays, and never in the middle of the night.
Second, a sense of what causes you would be welcomed. You know, so we can make informed choices. Is one cup of coffee okay with you, but not two? How do you feel about crowded waiting rooms? Watching TV?
Finally, if you could choose a singular demonstration of your power, that would be cool. You have choices: muscle spasms, word scrambles, staring without responding. Grand mals are a nonstarter, obviously. And I would like to remove from the table the option of dead falls when standing. Those are always inconvenient.
A dead fall most recently happened in February, announced by a thud from above while I was downstairs. Running up from the basement, I found Mark on the bathroom floor, his nose a bloody new shape.
“Hey buddy, you broke your nose,” I frowned, crouching down next to him and grabbing a towel. “We’re going to have to go to the hospital. Do you want me to drive you, or do you want to take an ambulance?”
“You,” he said.
“Let’s try to get to the couch,” I said, grasping his elbow. Mark struggled to stand, then struggled to make his legs walk. I ended up holding him around his waist from behind, propelling his body forward with mine. I slid onto the couch and pulled Mark down on top of me. After I skittered out from under him, Mark remained where he was – slumped, dazed, bleeding. He had fallen directly on his face, and I realized he also had a deep gash over his right eye. Living without his full skull, I worried about his brain, his grafts, the reconstruction of his sinuses. I called 911.
As happens, the police arrived first. “Have you been here before?”I asked the young officer. In other words, how much do I have to explain to you? No, he replied. I told him about Mark and what happened. He checked out the bathroom like it was a potential crime scene.
“Did his head look like that before?” he nodded at Mark’s forehead.
Umm yeah buddy, AS IF I’d calmly tell you my husband has a broken nose after a seizure, but leave out that his head was also newly caved in.
The ambulance came, the EMS folks scolded me for not having Mark’s med list on the frig, which for sure I should, and off we went for another long day in the ER.
In March, Mark returned to the Epilepsy Monitoring Unit (EMU) for another attempt at intentionally inducing a seizure while on continuous EEG and video surveillance. During his August EMU stay, Mark lasted eight days with no seizures before we gave up. This time, Mark had four seizures within 24 hours of being off his meds. Two were focal, one progressed to grand mal, one happened while Mark’s cousin Drew and I were talking to him. Drew and I had no idea Mark was even having a seizure. Mid-conversation, a tech and doctor came running in, peppering Mark with orientation questions and examining the EEG monitor. “Is the crash cart outside?” I heard the doctor whisper to a nurse.
Mark answered all their questions correctly despite his heart rate hitting almost 150 and his brain waves going bonkers. They injected him with a radioactive tracer that would light up his brain in a scan to show where things were going haywire, which was the point of this whole exercise. Then they injected him with a seizure rescue medicine. That afternoon, the doctor restarted his meds and two days later, I drove Mark home.
Mark’s medical journey was first captained by an oncologist, then ENT and neurosurgeons, and now the epileptologist, Dr. F, has the command. It’s her position, as an epilepsy doctor, that seizures are 1) bad for the brain, and 2) bad for Mark, what with the partial skull situation and the incredibly high risk for falls. She’s exhausted medications for controlling Mark’s epilepsy, and therefore the only other option to pursue is surgery. On Monday, Dr. F will present Mark’s case to a medical board composed of eight epileptologists and a sprinkling of other -ologists, who will determine whether Mark has the potential to be a candidate for surgery. If so, they may move Mark to a next step along the path of data collection around his brain activity and structure. Phase Two, they will call it. And after Phase 2, they will give a final determination on the feasibility of surgery.
Or, on Monday, the board may determine surgery is not an option, closing the book on another chapter in this story.
Don’t worry, everyone. I am clear-headed about another surgery. I hope they don’t recommend it, because once again I do not want to have to make a decision. And I certainly don’t relish the idea of another surgery. In fact, I hate it. It makes me want to lay down in the forest, wait for autumn, and let the leaves cover me. Only if there is a high potential for an improvement in Mark’s quality of life, or further danger to his brain by not doing it, would I remotely consider a surgery. “I’m okay with continuing with the data collection,” I told our PCP during a recent visit that was supposed to be for me. “But Dr. K, what do I do if they decide surgery benefits outweigh the risk? How will I know what to choose?”
His eyes locked with mine, and then he spoke what I already knew. “There will be no good decision.”
Currently, I am simply waiting for whatever comes next while keeping an open mind, reading a lot about epilepsy and treatments, and trying not to let stress about it get the best of me.
Last night my dear childhood friend Dorothy called. I had helped her son with his college application essay. She wanted me to know he was accepted to his first choice school. We caught up about her life, and she told me about her upcoming vacation abroad.
Shortly after we hung up, a bing announced a text from her. Dorothy had watched my Instagram story in which I had explained that after a night of seizures, Mark had an accident. This had only happened once before. Both times, in the middle of the night, he rinsed his pants and underwear in the sink and then threw them down the laundry chute.
Everyone taking care of someone with dementia has these kinds of stories. Mostly, they are kept quiet. To protect the dignity of the person who is sick, obviously, but people, I am TIRED and we all live in a human body that ultimately cannot live forever. The reality is difficult. The body is beautiful and hard to care for. The person is loved despite it all. I need you to bear witness.
In her text, Dorothy apologized for sharing about her upcoming trip, kindly acknowledging that my life cannot include these things. I have had this experience before, someone sharing something good with me and then quickly apologizing for it.
It’s okay, I urge you. It. Is. Okay.
“You live big out there for me,” I responded. And I mean that. My world is tiny in every way, and Mark’s sickness creates an event horizon that tries to suck all the light and energy from me. If you are a safe distance from your own personal black hole, I am SO HAPPY FOR YOU. Tell me all about it! Let me remember, and let me dream. By and large, I am okay. I find my ways.
Last week, Mark developed a new problem of low sodium caused by one of his seizure meds. To take him off the seizure med is to risk more seizures. To keep him on the seizure med without addressing the sodium problem is to risk brain swelling. The epileptologist asked me to ask the PCP to manage it. The PCP said he wants a nephrologist to handle it. And on and on we go, barreling down a new avenue on this journey.
While waiting for the nephrology appointment in June, I’m trying to add more salt into Mark’s diet. Cooking all his meals from scratch, as I do, is not the best way to load up on sodium, so the other day I took Mark to the McDonald’s drive through. I ordered him a double quarter pounder with cheese with Big Mac fixings, and I asked for a Filet-O-Fish.
When I was growing up in Philadelphia, my family took summer trips to the Jersey shore. Crossing from the mainland to the island and entering Ocean City, we would often go through the McDonald’s drive-through, a special treat. I always ordered a Filet-O-Fish, the taste of it mingling with the salt air through the open station wagon windows, the promise of a day at the beach so close at hand.
Pulling out of the drive-through with Mark, I took a bite of my sandwich and allowed myself to picture that I was at the Jersey shore, the wind and water and waves nearby. I went there in my mind. It was good. It was enough.
It’s been steadily raining today. From my couch perch, I can watch Mark while gazing at the huge swaths of springtime green outside the front and back windows. Mark has the heat on, but I’ve discreetly opened a window so I can listen to the rain and birds. The clear, bold whistle of the white-throated sparrows, dominating the early morning soundscape for weeks now, has given way to the throaty trills of white-crowned sparrows tucked among the trees. Titmice call from the nearby hillside, and the occasional red-winged blackbird announces its presence at the feeder with loud shrieks. Mark sleeps. His muscles periodically twitch and jerk, the sides of his mouth pulling up in a smile that is not a smile. Bob the Pandemic Puppy is perched on the back of a chair, watching the world outside. It is quiet. “It all comes in waves,” a new Instagram friend, taking care of her mom with dementia, quoted her mom saying. “Ominous wisdom,” she tacked on.
Months ago, post-the school year starting back up without me as a faculty member and pre-autumn leaves turning, I was just shy of what I’d describe as a train wreck. Here’s the cycle I have experienced: Mark crashes, I go into survivor/manager mode. Mark slowly recovers: I stay in survivor/manager mode. Mark recovers: I wait for the next shoe to drop. The next shoe drops. Over and over again. For years.
This fall, I didn’t know it yet but the series of huge crises we’ve endured year after year were slowly quieting down. Around Thanksgiving, after six months primarily in a wheelchair and with a lot of physical therapy under his belt, Mark succeeded in relearning how to walk again. A new seizure medication had been started and was working, mostly, with periodic breakthrough seizures that could look like wobbling, or staring off into the void, or speaking random words about nothing. The latter kind were short and curious. I approached him gently, in a “hey little buddy, where are you in your head right now?” kind of way. And then I would give him an Ativan, and he would go into into a deep, safe sleep. His most recent MRI, performed in December, showed “evolving radiation necrosis,” according to the report which I unfortunately was able to read three weeks before I could finally discuss it with the neurosurgeon. He immediately relieved my anxiety. “Evolving” did not mean “progressing,” as I had fearfully interpreted it. It just meant changing, and the surgeon said it was normal. You know, as normal as “radiation necrosis” and “brain” can be. He gave Mark a luxurious six month window until another MRI, which is our first real break from major medical intervention since this all started in 2019. Well, except for his scheduled trip to the ENT next month to get his sinuses scoped and cleaned, during which anything could be revealed. And his trip back to the hospital’s epilepsy monitoring unit (EMU) in March for another stay, to once again see if they can induce seizures and figure out the geography of his brain glitches. But still, that’s nothing compared to what it’s been like.
And so with this easing up of appointments and immediate concerns, we relax. We relax a lot. Mark’s daily life looks like this: reading the New York Times, napping, eating, napping more, watching evening TV, sleeping for twelve hours. With a splash of white wine throughout. Basically, that sounds like living the dream, if you forget that the dream is built out of brokenness. But mostly, Mark is deeply content. The reality of his changed brain is most evident in his ability to sit on the couch for hours everyday, doing nothing. He has no hobbies, unless you count our silent daily battle of him raising the thermostat and me lowering it a hobby. If I suggest an activity, Mark almost always says no, or “maybe” followed by an eventual no. He did, in a rare willingness to leave the house, agree to what I deemed a “safe enough” Covid activity of going, masked and triple vaxxed, to a matinee showing of the new “West Side Story.” He gleefully, from our backrow handicapped seating, sang along, loudly, “Gee Officer Krupke, Krup you!” Occasionally he will agree to fold the laundry, and sometimes it occurs to him to ask if I’d like more coffee. Twice a week I take him to physical therapy, where he continues to work on his strength, balance, and flexibility. Twice a week I take him to adult daycare, which we call the “Activity Center,” for three hour stints. There he works crossword puzzles, colors, does chair aerobics, and eats lunch. The fact that he is tolerating this was a shock to my system. A good one, I mean, thank God he’s willing to do this. But it was also the “oh dang” kind of shock that he wasn’t fighting something that he would have before. My little feisty fighter is either not recognizing that this place is deeply uncool for a guy his age, or is perhaps just accepting that this is part of his “medicine” as I told him. Whatever his day holds, something to do or nothing at all, its flows smoothly. Every morning, he says “Yay!” when I retrieve the New York Times from the end of the driveway and hand it to him. Every night, he falls asleep wearing the beatific smile of a worriless child, his head pressed against my arm.
Back in the fall, I felt a driving need to practice, as my own “medicine,” active engagement in the practice of being alive. I pushed myself to say yes to more, including putting Mark into memory care for my own respite. I went to a couple concerts, hung out around my backyard campfire with friends, and took many, many hikes. I practiced being alive with Mark, too. I took him to Virginia Beach, the land of his happiest years with his former wife and young children. I practiced my family’s strongest streak, which is finding joy in struggle. It was not easy to take Mark away; there were innumerable worries as every activity included obstacles to overcome. But I learned that this was possible, to balance joy and struggle, and to squeeze out just enough of the former to have the trip be a net positive. All fall, I put intentional effort into acting alive, and found I that by doing so, I felt it. I could settle into this life. Into this being life. Which is good, because, you know, it is.
I’ve been taking a course in a type of organizational leadership called sociocracy. The sociocrats have a tenant similar to Voltaire’s “perfect is the enemy of good: “Good enough for now, safe enough to try.” The purpose of this is to allow forward movement on decision making, rather than getting bogged down in finding a “perfect” result. “Good enough” has long been my philosophy on some things in life, like cleaning. (Ask my kids.) But in most everything else, I aspire to better-than-good. (Ask my colleagues.) With Mark’s care, I’ve aimed to be the very best partner, friend, and caregiver. But I think one thing that has shifted in my thinking since the fall, which has helped to move me from lost in panic to rather content, is the realization that at this point, in Mark’s care, in my life, in middle age, everything is good enough. We have a good life. I am a good-enough caregiver. A good-enough partner. A good-enough friend. A good-enough stepmom. This is not a dialing down of effort, it’s an acceptance of what I can and cannot do, given the limits of my life. Really, it’s a circling back to my favorite understanding of humanity: that we are all doing our best.
And so, so what if lately, my best has mostly been about joining Mark where he is. He naps, I nap. He reads, I read. He goes to bed, I go to bed. It’s winter in the north, the days are short and with Covid, the options are limited anyway. Yes, I still do other things. I take hikes and revel in the cold burning my face. I watch the silver rivulets on the stream and study the shadows of bare trees set like dark clouds across the snow. I witness the life of the wetlands and woods, revealed in the tracks of animals big and small, human and muskrat, deer and raccoon.
I watch for opportunities to push my life into broader ways of living. Last week, a Facebook invite from a neighborhood mom led to me to a hill, facing down a slope in my pink-lipstick colored snowpants and jacket. Living up to my name, I decided against the wise advice of the crowd and threw myself headfirst down the hill. Snow in my face blinding me, I didn’t see whatever bump smashed my head to my sled, but I for sure saw the amount of blood, a likely broken nose, and a spectacularly colorful black eye over the next week. As my dad would say, “It’s a newie!” And I agree. It hurt, and it was gross, and I was sorry it happened on my first run. But all’s well that end’s well, and I’m fine. And I am for sure alive.
Now if you’ll please excuse me, Mark is laying down for a nap. I think I’ll join him.
2021. You were a year. You gave us continued Covid, which meant we stayed quite separate from the world and others. We were doing that anyway, as Mark continued to need time to rest and recover from a bunch of surgeries. (Perhaps groups of surgeries should have names like groups of animals. A flock of surgeries? A murder of surgeries?)
You gave us endless kindnesses from strangers, colleagues, friends and family. Monthly flower deliveries, texts and cards and emails and calls and Facebook messages. Hot tea on the front porch, laughter and a LOT of cheese shared around the backyard campfire. Moms in our community rallying over and over to bring meals, chocolate, and other crucial support during the rough times. Our neighbors basically adopting Matthew and taking him everywhere. Other neighbors filling in my many home maintenance skills gaps. On and on. So much kindness.
2021, you really put us through it. We’re glad we found a way to see the good where we could. An amazing trip for me to visit Alma and Adam in Massachusetts. Hikes and talks with Anya. Many meaningful phone calls with friends and family, some who have come out of the woodwork (and I’m so grateful). Far-flung and local friends and family breaking our isolation bubble by coming to visit. My parents keeping close during all the hard moments. A trip with Mark to Virginia Beach to tour the tromping grounds of his “good old days.” Michael killing it as a college senior. Ben’s good choice to take a break from the college rigmarole to spend time working on himself. Matthew earning his driver’s license and gaining independence as he gets himself to Speech and Debate and fencing practices. The hard times also were softened by amazing caregivers, doctors, nurses, physician’s assistants, physical therapists, occupational therapists, and speech therapists.
“It’s a great day to be alive!” Mark said this morning. Truly. We are fortunate, and we are thankful.
Go to sleep now, 2021, it’s time to say goodnight. We are ready for 2022.
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.
On Thursday, I was sitting in my car in the high school parking lot, waiting to pick up Matthew from his Speech and Debate team practice. I had my window down, and a car pulled in next to me. “Are you Diane?” I heard a woman’s voice say. “I am!” I said brightly, turning to her. I recognized her face from Facebook, but I didn’t know her name. She introduced herself and said compassionate things about Mark’s and my situation. She mentioned that she understood my intellectualizing in my writing.
Afterwards, I thought about what she said. Intellectualizing. I do that. I know I do. I do it because it’s what my brain wants to do, and it’s also a survival mechanism. Because from time to time, when I allow myself to feel the scope of this tragedy, for Mark, for his kids, for my kids, for me, it’s like inviting the tsunami at the horizon to advance. That dark line, from allllll the way left to allllll the way right. “Ready or not,” I could say, staring it down, “Advance!” I don’t choose to say that. Because I saw that movie, and I know how it ends: chaos, swirling debris, massive trauma, and lives lost. I have to function, and that wave is too freaking big for me to handle. Instead, I carry a big rucksack. I fill it heavier and heavier, sharing it with those who are willing to take a turn, and otherwise bearing what I have to bear.
How does this feel? It feels really, really hard. It feels very, very sad. It’s very, very heavy. I’ve been doing great with my Alive Tour, previously named the “Not Dead Yet Tour.” I’ve been forcing myself to engage more, plan more, experience more. I went to the Rolling Stones concert, took Mark to the zoo, and have said yes to more social things than I have in the last two and a half years. Which may not be saying much. “I’m feeling worse, somehow, now that I’m doing more,” I told my therapist last week. She wrinkled her brow. “That sounds like grief,” she said. Oh! I didn’t realize. Like the good student I am, I recognized that I had something to grab hold of. Grief work! Work! I could do this. I ordered some books. “It’s hard to find books that are about grief but not about someone you love dying,” I said to a friend. “The grief is about YOU,” they said. “Oh, I’m the one that died?” I said. “Yes,” they said. I understood. Mark is the obvious grief. On top of that, I am grieving the loss of me.
Some days I feel that more than others. Today, capping off a not great week, was one of those days. Today, my dad had surgery to treat recently diagnosed bladder cancer. My dad, who is my rock, my source of wisdom, my coach, my companion, and my co-conspirator in many a too-long bike ride in questionable weather conditions. He’s got cancer. I am carrying that in my rucksack. A few days ago, I took a long bike ride. I didn’t feel like it. A caregiver was watching Mark, the weather was adequate, and so I did it anyway. I pushed through hard miles until I hit the point, earbuds in and my playlist blasting, to where it felt good. I pushed more, pedalling harder, music pounding, until I started to cry. I cried for a mile or two, until the tears dried up.
Today, I also read Mark’s recent neuropsychological evaluation report. I was waiting for this testing report, to give me a more objective assessment about Mark’s brain functioning. There were specifics on many metrics, none of them using any words above “average” and many of them using the word “impaired.” And then some hard hitting conclusions.
These are not surprises. I know these things, at some level. And yet reading them in print is a wallop, again. The consistency year to year means that how things are is how things can be expected to stay. Mark will never read these words, and he does not know the part that I already knew — that a recent scan is “worrisome” as the radiologist wrote. Could be something, could be nothing, and I know enough to know to control my emotions around the uncertainties. And yet it can’t not weigh me down. Getting through the days until we have more information is difficult. I haven’t told Mark; I don’t see the benefit in him knowing. I am carrying this burden for him.
“i carry your heart(i carry it in my heart)” E.E. cummings wrote. I remember plumbing that poem for its depths, as best in my complete earnestness as I could, as a young 20 year old. I understood then as much as I could, as much as anyone can before they start carrying anyone’s heart. Now I understand so much more. And I carry it. It’s a heavy, difficult, convoluted beauty and mess. Love.
Sometimes you don’t truly feel the heaviness of what you are carrying until you put it down. Driving away from Pittsburgh, into the Laurel Highlands, I was struck by a feeling of lightness. Perhaps this is how astronauts feel, I thought, driving deeper into the mountains and leaving Mark further and further behind. Having blasted through the thick edge of atmosphere to interplanetary space, friction, heat and gravity give way to silence and the simplicity of light, dark, inside, outside. Light as a feather.
Then I started crying. Deep sadness, frosted with a layer of the occasional kind of panic I remember from early parenting. The OH-MY-GOD-DID-I-LEAVE-THE-BABY-ON-THE-ROOF-OF-THE-CAR kind of panic, bred of exhaustion, responsibility, and fear of failure. I kept this up, vacillating between the wonder of freedom and the crushing weight of what I was leaving behind, periodically on the trip. But. But, but, but…
Do you know how beautiful it is out there, free of gravity? Blindingly, shockingly, stunningly, searingly beautiful. I drove an hour and a half that first day, until I reached the long gravel driveway of a friend-of-a-friend’s mountain home. The car wheels crunched past still-green trees, the asters and goldenrods betraying the season as they bent under the weight of white, purple and yellow blossoms. I found the key to the house, put the cushions out on the sunny deck, and checked my cell service. None. I laid down and fell asleep, waking an hour later to the crunch of my friend Lisa’s car rolling up the driveway.
Respite. From Latin, ‘Refuge; consideration.’
This was not a vacation, it was respite. A refuge from my personal years-long storm, a time to weave onto my rattled life a buffer of myriad blankets of things I love. I did this in a way that provides shape, texture, and warmth for who I know myself to be. When I left the mountain house, full of friendship and food, I headed directly for the ocean. Along the Connecticut coast, I ate a $33 lobster roll in an empty bar while talking to the young bartenders about their lives. I silently strolled the darkening streets of wealth during the softest hours of dusk. I watched monarchs alighting along the ocean’s edge and biked through quiet towns heavy with pumpkins and colonial blue doors. I spotted egrets hunting on the edges of honey rushes and cormorants diving into steely masses of silver fish. I drove many, many hours.
When I arrived at Alma and Adam’s doorstep in western Massachusetts, a gift of hot chai tea in hand, I was crying. “I made it,” I stuttered out. Alma laughed and opened their arms wide. I hadn’t allowed myself to believe I could be there until I actually was. For four days, we ate, hiked, explored, and talked. It had not occurred to me that I had not seen Alma’s world in three years. An eclectic, life-filled apartment exactly as I’d imagined. Their cat warm and friendly and then suddenly the fierce hunter. The short walk to the edge of the churning Connecticut River, where Alma spots bald eagles along the edge of the hydroelectric dam. Ominous black vultures spinning constantly in the sky overhead.
While I was in Connecticut, Alma had texted me. “How about this for a sentence? We can go to a bog and go to Vermont.” Alma knows me very well. This sentence was like giving me rocket fuel and telling me we were flying to the moon for a day. Thrilling. We drove winding roads amid changing trees to one of the endless unassuming trailhead signs dotting the region. The colors, the smell, the bog ecosystem with plants that I’d not seen in 30 years. Alma jumped on the boardwalk floating on a sea of crimson red sphagnum moss. The ground undulated like a waterbed. The silence permeated the air. I felt complete.
There are many other stories of the trip. Lunch and a long walk with my dear old friend from Chicago, Rebecca. The “Big E” regional fair, with fried everything, salmon-on-a-stick, ribbon-winning preserves and tatting, and the opportunity to for me to yell “Sooie!” over and over during the pig races (to Alma’s horror). Eating along the edge of the Connecticut River in Vermont, then driving into New Hampshire for a hike. Hiking the mushroom and pink lady slipper-ladened conservation area near their apartment that Alma and Adam each walk to for their own regular respites. My own solo hikes, bike rides, and moments of music and contentment while driving.
There is a lot coming up with Mark, and it’s been an eventful medical week since we’ve returned to the homefront. But I will leave that for another post. For now, I will rest in the memory of my respite. At the onset, I had titled this week away the “Not Dead Yet Caregiver Vacation.” Somewhere along the line, after the crash of emotions had hit the shore and I realized the beach of me was not fully eroded, I understood that I have been aiming too low. Like some kind of muscle-memory, it came back to me. I am alive. I remembered. I felt it. And it was sweet, and it was good.
“Someone wants to give you a gift, and they are asking me what to give you. If you could have anything that’s special and not a necessity, what would you want?” Alma asked me a few months ago. “Time,” I answered immediately. Time was the one thing I wanted, the one thing I needed, the one thing I could not readily give myself. I know me pretty well. We are on a first name basis. I know how to take care of myself. I know how to refill. Self-care, spontaneity, creativity, friendship, family, exercise, nature; I know. I just need the time to do it.
“People who haven’t walked in your shoes can’t understand,” said my mom, a cancer survivor. She knew. Lord knows, and she for sure does, I probably did not do enough when she was facing down the gauntlet of chemo rounds. At that point, I didn’t know. Nearly at the end of her rounds, she hit the wall and wanted to give up. My dad told me this. I don’t think I understood it. In my view, she had been handling the whole mess stoically. And so, you know, fine. But with some people, you have to read the edges of their words, watch the shifts of light and shadow and try to figure out what they need. My mother is one of those people. And so, I can be, too.
Except sometimes, I am not. Sometimes, I am the drowning swimmer who finds herself out beyond the surf. “She seems to be doggy-paddling. I think she’s fine,” some watchers say to each other. They turn back to their books, naps and cocktails. I begin to call out here and there. “I’m okay! I’m a little tired, but I’m okay!” Startled, they look up. “She’s okay,” they whisper, “She just said so.” Time passes. Miraculously, I’m still doggy-paddling. “Hey!” I cry out to the picnickers on the beach,”Hey!” Some keep eating. Maybe they didn’t hear me. Others carefully call out, “Are you okay?” “I think so!” I say. ‘You’ll let us know if you need something!” they say, returning to their distractions. The ones who are sensitive, the empaths, the ones who have also at some point doggy-paddled too long, the ones who are open and unafraid, the ones who understand that fears and insecurities are lifelong challenges to face, the ones who know that you never, ever leave someone who needs you alone in their terror, understand that maybe I’m not okay. Maybe I’m getting tired. They keep an eye on me. Eventually, fatigue catches up. I am deeply aware that I am not okay. I am tired, so tired. I see a gathering of lifeguards, and they are talking to each other on the beach. “Help!” I cry as loud as I can, “Help!” “We hear you!” one says. “We are calling a committee meeting to decide how to best help you!” “What?” I yell over the wind. I’m confused. Did they say to keep swimming? Are they coming? I keep swimming. Time passes. Days. Weeks. “Should I keep swimming? Can you please help me! I’m asking for help!” I gasp out. “Yes!” one yells, annoyance in their tone. “You don’t get to decide how we respond. We’ll get back to you when we have an update.”
I stay confused for a time.
Then I decide to save myself. But not alone. Never alone. I calm my mind. I paddle carefully until I find my footing. So focused on the lifeguards, I hadn’t seen them. They had been watching, listening. They had been waiting the whole time. A cadre of people reaching out to grab hold of me. They pull me in. Give me warm blankets. Feed me. Pat my head until I fall asleep. “Rest, rest,” they say encouragingly. I close my eyes. I feel light as a feather. Another swim will happen another day. “Shhhh,” they whisper.
This is my story. It is an epic story of love and loss and life , and I want it to matter. And I tell you this particular story for this reason: no matter how you are doing and what you think you have to give, someone in your life is probably out there doggy-paddling. They may or may not be calling out for help. They may or may not be calling out specifically to you. But if you see them, if you hear them, you know. Do not look away. Do not be afraid. You can help. There is always a way. You can put out your hand. You can swim out there with some food. You can skywrite them encouragement. There is ALWAYS a way.
Listen. Hear. Respond. Mr. Rogers taught us to look for the helpers. Be the help. Be the helper.