Real talk here from the widow-who-shall-not-be-judged-because-grief-is-an-individual-thing: tomorrow I bury Mark.
Well, the part of him I’m going to bury, anyway, as the boys want to spread some of his ashes where their mom is spread. Which means that today, I had to do the task I’d been putting off: dividing the ashes. I had gotten stuck on the idea of closed and open systems. (Career problem.) Once that bag was opened, there would be no chance of not having wastage. Some of Mark would drift away, lost in the floorboards of the house or wherever the wind would take him. I forced myself to do it anyway. I took the plastic bag filled with Mark outside, cut off the zip tie, and started scooping out Mark ash, Mark bone, and either what is part of his knee replacement or part of the crematory machinery that fell onto his body (I think the former). I filled two empty pill containers for absolutely no reason (rainy day mentality?), one gallon-size ziplock bag for the future spreading activity with the kids, and then resealed the original bag with a new zip tie and put it in my car so I don’t forget to take it to the cemetery tomorrow (widow-brain is no joke.).
There was wastage; how could there not be? I wiped my hands off on my kale plants and the sweatshirt of Mark’s that I am wearing. I’m letting the little table I worked on, now covered in DNA-infused Mark powder, to sit in a sunny, windy spot to let nature move him wherever she will. (Bob has decided to guard it.)
The day is stunningly beautiful, the Steelers must be losing judging from the neighbors screaming on their patios, and I feel sad but I am okay. Mark’s not in that ash, anyway. He’s with me, in my heart and mind. Just like before, I am carrying him. Love. Isn’t it amazing?
I think about it on average about every minute of every day. Sometimes it hits me with surprise, and sometimes I am just turning it in my head like an unfamiliar object I am exploring with my hands. It’s been 44 days, and his death feels like it was both yesterday and long ago. It’s shocking, still, that it will be true later today, and tomorrow, and forever.
At 53 years old, I’m fortunate to say that I’ve never had someone close to me die. Because of that, nothing about this experience is expected. Heck, Mark dying was not expected. (I’ll write more about that at some point. I am not ready.) For the first few weeks after he died, I took to my bed, climbing out just to do the necessary things, like going to work, interacting with the kids, and dealing with the depressing paperwork that death brings. I’ve slowly been regaining energy, but I am still finding my center in the simple act of resting. Looking in the rear view mirror, I can see that for the three years of Mark’s illness, I never truly rested. Every moment of every day was shaped by taking care of his every need. I woke when he woke. I slept when he slept, the kind of terrible sleep a new parent has while keeping one ear attuned to the breathing of their baby. Now my body relishes the simple act of laying in bed for as long as I need, as many times a day as is needed, the dogs nestled next to me, my bedroom chilly and the blankets piled high. None of those things in the last sentence were happening before. I am living in loss and in peace.
Grief is exhausting work. My brain is constantly shifting around the facts and feelings. I feel deeply respectful and protective of the process, like I am parenting my brain-child. Does she need sleep? Let her sleep. Does she want to take a walk? Yes, let’s do that. My brain-child likes lattes, Netflix, and quiet. She is sad, of course, and that makes complete sense. Sometimes she feels content, and that’s surprising. She is living in the moment, still, having been highly trained to stay in the present with Mark.
I came to this place of Mark leaving the earth with exactly no construct around death. Thoughts, opinions, considerations, yes. But arriving here, in a painfully non-theoretical place, has opened up thought processes that I have never explored. The most immediate has been, of course, where is Mark? He was here, and now he’s not. When Mark died at hospice, my friends and family stayed with me, with him, until I felt a separation between Mark’s body and spirit. I was sitting next to his body; that’s all that was there anymore. I could leave that room, leave that body, because Mark had left it, too.
Weeks later, my living room a sanctuary decorated in dried flowers and twinkle lights strung up with sympathy cards, I continued to consider this: where is Mark? Before he died, I always knew exactly where he was: on the couch, in bed, at memory care. He was gathered in one place. Was he now fully absent? Or with no body, was he more fully present than he ever could have been? Then any of us can be, bound to our flesh and bones?
My therapist encouraged me to go out for a hike. I returned to the park I’d so often walked when I was getting breaks from watching Mark. The day was overcast, the wind tossing the treetops, the wetland water rippling, the geese and ducks bobbing and feeding. I down sat on a bench amidst the swirl of energy of life all around me, and I wept. Where was Mark? Looking across the landscape, something came flying towards me, landing under my legs. Peering down, I watched as a large praying mantis swiveled its creepy little head to look up at me. My tears turned to laughter. Mark was an engineer and worked in numbers. He made exactly one sketch for me, ever, years before when we were dating: a praying mantis. If Mark was going to send me a little message from the spirit world, this seemed like a Mark-way to do it. I watched the praying mantis for a long time, finally saying goodbye to it, carrying a dose of happiness and peace with me as I walked out of the park.
I know that meaning-making is part of the deal of being human. And I believe that the creation of personal narratives is just that – personal. I am experiencing Mark’s death as a creative process unlike any I’ve ever explored. Mixing all the things of my life into the soup of my electrochemical brain – nature and art and religion and science – and the most beautiful thing has merged as my personal truth: I get to make sense of my world, and if my construct helps me, and if it doesn’t hurt others, then I believe it is good. It is GOOD. In that moment with the wind whipping and the smell of autumn leaves decaying, staring at that praying mantis, I chose to believe that Mark was, indeed, everywhere now. He’s with me as I write this early in the morning laying in bed. He’s with me on my commute to work. He’s with me when I go to the movies, or out to dinner, or sit by the fire on my patio.
Mark’s body is not here anymore, and in that I miss him all the moments of my days. If I could choose, I’d still be taking care of Mark everyday, keeping him safe and feeling loved. But have I really lost Mark? I think no. The gifts Mark gave to me through our long, difficult, love-filled journey stay with me. I can still talk to him, still be with him, in ways I don’t really understand. And I’m okay with that. I can continue to turn it in my hands, heart and mind, this new experience with life, these burgeoning thoughts and explorations. I can also just let it be. Either way, I will be okay.
My loving, kind, quiet, funny, positive, gentle, confident, and smart husband, Mark Joseph Hrehocik, crossed over the threshold of this world to the next on August 25, 2022, at age 59 from dementia caused by sinonasal undifferentiated carcinoma and treatment. Born in and faithful to his Mon Valley roots, Mark was the epitomized Pittsburgher, holding only two jobs in his life: working a game booth at Kennywood Amusement Park and enjoying a 36-year career as a mechanical engineer at Bechtel Bettis Atomic Power Laboratory. A proud Slovak and the youngest of seven raised in Glassport, PA, Mark believed in both the simple joys of life and in working hard while pacing oneself. Mark loved mentoring younger engineers, spending time with his three children (Michael, Ben, and Matthew) and two step children (Anya and Alma), a solid round of golf, a lunchtime run on a hot day, and a poker game with friends. He could identify which play a Shakespeare quote was from and sing every lyric to songs from Bob Dylan to Bob Marley to REO Speedwagon. His two favorite books were Les Miserables and Ball Four.
Predeceased by his first wife Kristen, stillborn daughter Kayleigh, parents Michael and Pauline (Terek) Hrehocik, and sister Tish, Mark knew sorrow. He drew from this deep well, practicing compassion for others, a seize-the-day zeal for life, and the wisdom of knowing that sitting outside enjoying a sunset has just as much value as accomplishing any task. We learned from each other the depths of love in the hardest of times. We were grateful for the good days and found joy tucked into the folds of the bad days. We felt fortunate for the time we had together.
Mark and I knew each other through nearly equal years of sickness and health. Mark was always insistent that he was going to live forever. He would have given anything for one more day with Michael, Ben, and Matthew, and to get that—just like their mom did—Mark gave everything. I wish he had been right, but Lord, did he fight a good fight.
My Mark now sails through time and space, launched into the unknown and unknowable, a brilliant soul and spirit untethered from the confines of our small and beautiful world. In addition to me (his wife, Diane Reckless), Mark is survived by many who loved him: his three sons, Michael, Ben, and Matthew; two step-children Anya and Alma; four sisters, Paula Roche (John, dec.), Teena Culbert (Roy), Jane Clampitt (Henry), and Marcia Uziel (Don, dec.); a brother, Michael Hrehocik (Vickie); nieces, nephews, friends, and a huge and immensely generous community that rallied to support our family for the past three years. Please join us for a celebration of Mark’s life at East Liberty Presbyterian Church, 116 S. Highland Avenue, Pittsburgh, on Saturday, September 10, at 10:30am. Reception to follow in the church social hall. Please feel free to send all the flowers; Mark loved them. Memorial donations in Mark’s memory may be made to the Light of Life Rescue Mission, 913 Western Avenue, Pittsburgh, PA 15233. Please visit the funeral home website (www.dalessandroltd.com) to leave a personal message of condolence for Mark’s family.
Apparently the Rainbow Bridge is for animals, not people, but I like to think that Mark passed over riding on a glorious spectrum of light energy, has found his mom, dad, sister, and first wife, Kristen, has met his baby daughter Kayleigh for the first time, and is petting their dog Seamus. I hope he is laughing, singing, and organizing a softball game. I hope those that went before him gave advance notice to the angels that Mark likes to do things his own way, is deeply compassionate and kind, and may not follow every heavenly rule to the exact letter. Mark Joseph Hrehocik passed away at 12:55am, August 25, 2022, eight hours shy of exactly 10 years since Kristen died. He was surrounded by love and laughter and tears. He was and will always be cherished. Service to be announced.
Dear Friends and Family near and far, neighbors, community members, and virtual strangers who have appeared and woven themselves into a cherished framework of online support: My beautiful Mark is leaving us. He was diagnosed in August 2019 with sinonasal undifferentiated carcinoma. He is cancer free, but the accumulated damage from tumor and treatment has become too much for Mark to endure. Ultimately, radiation causing encephalomalacia (brain damage), and the encephalomalacia causing seizures that are drug resistant, is the probable cause. His body is simply slowing down and stopping. He is comfortable and being cared for by a wonderful team. Everyday, I tell Mark over and over the best thing I know to say: he is good, and he is loved. Every person reading this has helped us in some way, even if just by joining us from afar on this journey. Thank you. There have been many terrible times and many joyous moments and so many peaceful hours of contentment and love. I am grateful for the three bonus years Mark and I had together. I will keep holding his hand until the time comes when his spirit is ready to soar. With love, Diane
I started a blog post in June that looked like this:
“Death by a Thousand Cuts”
What Mark can’t do:Regulate his eating. Have a conversation. Use a phone. Understand a clock. Track time. Understand his limitations. Remember conversations. Remember for 10 minutes what he’s done, where he’s been, what he’s eaten.
What Mark can do:Feed himself. Dress himself. (Kind of – got lost putting on his pants today. Forgot to put on a shirt.)Toileting.Grooming? (Not sure.) Bathe? (Not sure.) Mobility (in wheelchair).
Things had changed so dramatically and quickly with Mark over just a few weeks; I was simply trying to organize my observations. In May, Mark could go outside by himself, retrieve the newspaper, and read it. After his seizure and fall in June, resulting in a broken kneecap and a return to the wheelchair lifestyle, Mark never fully came back up to his previous cognitive baseline. He was unpredictable in new ways. Not all of them were bad: he started parking himself in front of the pantry and grazing on random foods. He decided against the container of nutritional yeast he opened, but happily polished off bags of Doritos and spoonfuls of peanut butter. His persistent aim of finding and consuming any alcohol in the house simply stopped. Non-alcohol calories were welcome, so I was happy with this change, except that it represented some kind of invisible shift that was out of character and therefore might not good. And then some of the changes were obviously not good: he wore dress pants one day because he “couldn’t find” his other pants. If I didn’t turn on Jeopardy, he didn’t remember our nightly habits. He stopped reading.
The “Death By a Thousand Cuts” blog draft title referred to both of us. I dug in and tried hard to keep up and interpret the painful and reductive changes. Mark was going deeper into himself, less able to answer simple questions or even finish a sentence that he might start. Lying next to him at night, I felt his small muscle spasms that indicated seizure activity. His many meds were not keeping up with the electrical storms flaring in his brain.
I read a lot about seizures and brain damage. I watched an excellent 90-minute-long video tutoring med students on the topic of seizures to prepare for their boards. I discussed what was happening with Mark’s doctors. The answer, in short, was we don’t exactly know, and we can never know. Scans showed no tumor growth or other emergent problems. The remaining causes for his decline — seizure meds dulling him out, or brain damage from the seizures — were equally possible, and completely unknowable. The only way to find out would be to reduce his meds, increasing the chance for seizures. And since his seizures are very dangerous, we cannot do that. Therefore, nothing could be done, other than the last ditch option of 50/50 success with the vagus nerve stimulation (VNS) surgery planned for late July.
In late June and at the point when Mark started unlocking the gate at the top of the foyer steps and announcing he was going out for a bit, I decided I needed a break from the 24/7 stress. As caregiver rhythms can align with the cared-for, I sensed my reserves rapidly declining at a rate commensurate with Mark’s changes. I booked him for a two-week stay, starting July 5, at the same senior living facility he had stayed in last September.
Early on July 4, the day before he was scheduled to start his respite stay, Mark again tried to leave the house. “Where are you going?” I asked. “For a walk.” He was hovering at the top of the stairs. “I’ll go with you,” I replied. I carried his wheelchair down the steps as he carefully held the railings and walked down, one step at a time. At the bottom, Mark climbed back into his wheelchair and started rolling towards the car. “I thought you wanted to go for a walk?” I said. “A walk? No, I want to go for a drive,” he said firmly. He kept rolling to the car.
I loaded up the wheelchair and Mark, and I headed south on Rt. 19. I put my “Mark’s Happy Place” Spotify playlist on the radio, and we sang along together to rock and folk from forty years ago. Bob Dylan, Journey, REO Speedwagon. I thought Mark might want to visit one of the nearby lakes we frequent, but he wanted to keep going.
An hour later, I pulled into Wheeling, West Virginia. I’d only been there once before, years ago. I located a waterfront park along the Ohio River, unloaded Mark, and pushed him along the walkway. We looked at war memorials, train line memorials, and a tug boat slowly pushing coal downriver. We watched a stage being erected for an evening concert. Mark was mostly silent. The air was still early-morning cool when we got back in the car and headed to nearby Oglebay Park. We took in the beautiful gardens, and then drove onward to an outdoor BBQ place down the road. Mark ate every bit of brisket, including the bits of fat that we both had trimmed off.
Leaving the restaurant, Mark stayed perfectly still as I stopped his wheelchair next to the car. He looked completely drained.
“Lock your wheelchair,” I instructed. He did.
“Get into the car,” I coached. He did.
“Put on your seatbelt,” I prompted. He did.
Back home, Mark seemed perfectly happy but exhausted. We had had a good day, but Mark hadn’t really reacted to most of what we did. I’m not sure he even knew where we had gone. And by dinner time, he had forgotten we had gone anywhere at all.
The next day, I drove Mark to the senior living community. I simply explained he was there for rehabilitation and rest; he accepted it without a word. Many of the staff people recognized him from his stay last year and greeted him by name as we reached the locked third floor memory care unit.
When I returned to visit the next day, I found Mark sitting outside on the enclosed patio, enjoying the sun. He appeared utterly content; the food was “good!” and the people were “nice!” We visited for a while until he got tired. I pushed him back to his room, tucked him into bed under his fleece Steelers blanket, and gave him a kiss goodbye.
Then I went home and cried. And I continued to do so for days while encountering one serious thought after another. Mark was safe and content in a facility staffed with people acting as a team to care for him. I wasn’t alone in caring for him, as I usually am, and that felt like an immediate relief. Taking a step away from the boulder I had been pushing up the mountain helped me acutely feel how very heavy it was.
Questions and thoughts I didn’t even know I had started to rise to the surface. I had space and time to think. Stepping out of the box of daily tasks related to caring for Mark, I found there was a lot to consider.
The first decision I made was based on the most primitive instinct: an immediate, clear, gut feeling. Sitting quietly that second day on the patio with Mark, the white lattice and flower pots bright in the sun, two red-tailed hawks soaring overhead and the unit cat snoozing nearby, I looked at him and thought: I can’t take him back to the hospital. I cannot. The VNS surgery was elective and outpatient, and therefore much less scary than, well, EVERY OTHER SURGERY that Mark has had. But there is anaesthesia, which Mark is historically not great at handling, and the chance for infection, and the every-three-month monitoring of the device driving us back to the hospital more and more. Also the little part about there being a mere 50% chance of the VNS working, and “working” meant reducing his seizures in frequency and intensity by, optimistically, 50% at best. I’d been so sure, just a month earlier, that this was worth trying. Now, seeing Mark at peace, his body being as whole as it can be, his brain as good as it very well will likely get, the opposite seemed clear.
The compassionate choice would be to not put him through another surgery, and especially one that would cure nothing.
I let those thoughts sink in for two weeks.
They didn’t change.
I canceled the surgery.
The second thought that popped unexpectedly into my head after I dropped off Mark was this: he was exactly where I’d want him to be if I could not take care of him at home anymore.
He. Was. THERE.
This is the facility where my friend has nursing privileges. Another friend, a retired colleague from school, messaged me to say her dad is in the same unit. She was visiting with Mark during his respite, and reporting to me he was doing well. The facility is one mile from our home. It’s small, well-kept, and safe. We’d had a good experience with him there last September.
I worked with these thoughts for a couple weeks. I thought about the losses I already had endured in this journey with Mark, and how both his cognitive decline and his physical body being away felt like unearthing new levels of loss. I felt deep grief. I missed him. I missed the physical him being with us in the house, shaping my days. I missed the Mark I cannot have back, the one before he was battered by cancer and treatment. I’d always assumed that keeping him at home was the absolute clear and best decision for him. How could it not be? I talked to friends and family. One person said, “At this point, what is safest for Mark is the best decision, and it does not seem like it’s safe for Mark to be at home anymore.” I wasn’t sure I agreed. Another friend said, “If you decide to keep him there longer, remember you can always change your mind.” I found resources to read, podcasts to listen to, and kept open to observing my feelings and thoughts as they fluctuated throughout my days. I tried to imagine the possibility of it being the loving decision to keep Mark in memory care. Was I really not able to keep him safe? Could I be a good partner to Mark if I didn’t keep him at home? What was best for Mark? What was best for the boys? What was best for me?
After one week at home, visiting Mark daily, I drove east for a family vacation. On the way into New Jersey, I had a phone session with my therapist.
“Am I being impulsive?” I asked after explaining the possibility of extending Mark’s stay.
“No,” she said.
“Am I being selfish to be to feeling like I can’t do it all to keep him safe and at home forever?” I asked.
I barely whispered my final question: “Can I be done? Did I do good enough?”
“Diane,” she said, “you did more than good enough.”
I extended Mark’s stay by two weeks to see how that felt.
It felt sad. It felt like loss. And in my core, I detected something else. It felt right. It felt like it was time. By all metrics, Mark was doing well. This was coming from a tragic place: his cognitive function was now so poor now that he was not tracking where he was, why, or how long he had been there. And without tracking the hours in the day or the days passing, or a conversation or even a full thought, Mark could simply be.
Mark was always good at that, being present in the moment, and now that is where he truly lives the most. He’s often napping, or on the patio, or accepting staff guidance to play bingo or UNO. He laughs and smiles when they play a game of toss with a beach ball. His answer to how he’s doing is still, often, a solid, “Great!”
And so here we are, friends, a place I did not know we were going. Mark now lives one mile down the road, in a locked memory care unit. That’s where he will stay unless something I currently can’t envision — but am open to — changes. I am living my days mostly as I had before. Exercising, reading, taking care of household things and the boys. Waiting for the other shoe to drop, which is a hard habit to break, and being so glad it’s not.
I visit Mark every day. He never asks to leave, he never asks how the kids are, he never seems sad or uncomfortable.
I’m choosing to look at this as the next stage in a story about love. And that is a conscious choice, in a story that could be defined more by loss than love. There will be a lot of beauty in this stage, too, woven in with sadness. We will continue to create a tapestry of exquisite beauty born from this complicated life and love. It will be clearer from the long view, and on hard days, I will remind myself of that.
This morning on my way into the facility, I stopped at the front desk to make sure they had posted Mark’s picture, as we had discussed. A few days earlier, every staff person I encountered had made sure to tell me, with surprise and wonderment, that Mark had achieved a rare feat; he had escaped the locked third floor and was found wandering on the first floor. He was walking, having forgotten – as he does – that he uses a wheelchair. When I heard the news, I talked with staff and made sure they had a plan for how to keep him safe. And then I allowed myself to feel a surge of joy that underneath all the damage, deep in the hidden corridors of his brain, he’s still my smart and clever Mark. It was delightful and funny. That’s my guy, still the troublemaker.
It was 8:15am when I got off the elevator and walked into Mark’s room. He was sound asleep. I woke him up and brought him to the dining room for breakfast. I greeted the care team and residents I’ve come to know by name, and they greeted us by name, too. I made conversation with Mark and a pleasant couple living on the unit, Peggy and Paul.
After Mark finished his scrambled eggs, bacon, sausage and coffee, I pushed him back to his room and directed him into the bathroom. He brushed his teeth, twice, because he forgot within minutes that he had already done it. I turned on the shower, adjusted the water temperature, and instructed him to get undressed. He looked at me, trying to process, and instead unlocked his wheelchair. I relocked it. “Take off your sweatshirt,” I coached, gesturing to demonstrate. He unlocked his wheelchair again. I relocked it. I pulled his sweatshirt off, revealing that he was, in fact, sporting two sweatshirts in addition to a t-shirt. This clown car of clothing continued. He was wearing, between his two feet, five socks. He had two pairs of pants on. Why? He couldn’t tell me.
After his shower, he shaved one side of his face and I shaved the other. I rubbed lotion gently across his very dry face and forehead.
“What do you want to do now? Sit outside, or take a rest?” I asked when we were finished.
“A rest,” he said, transferring from his wheelchair into bed.
I kissed him goodbye, and then I drove home to figure out how to pass my day.
This isn’t the end of the story. It’s the next part, which includes Mark, my husband, living in memory care, and me, his wife and caregiver, taking care of him in new ways.
Alma, discussing Mark not living at home anymore, asked me how I will adjust. “Well,” I said, “I don’t think I’ve let my identity get too wrapped up in being a caregiver.” Alma let out a guffaw. “Mom. Your Instagram name is ‘dianelovesmark.’” Point taken.
We will have to just keep living this life and see.
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.