Building Self-Confidence

It really stinks to make decisions without the person you discussed everything with for more than a decade. There was something greatly reassuring about talking about decisions with Chris; we talked over everything from the little insignificant stuff to individual work choices. I think he felt the same way when he was the one pulling the trigger. Now I have to weigh the pros and cons of decisions without Chris and stay out of my own unsure way. Of course I have family, good friends, and neighbors I can consult and I sometimes do, but it is not quite the same as having your partner available who has the same vested interests. As it turns out, life is full of decisions so this has been a major area of adjustment for me. I've needed to get over my lifelong habit of doubting myself and this is a work in progress.

Lately we've been on a streak of things breaking or needing maintenance. Nothing has been major, but all of these things are annoying and inconvenient. Each broken item has required assessment of the urgency of the problem and mental calculus of whether I can/should try to fix it myself, arrange for someone else to repair it, or replace it. If I do want to try to fix something outside my old wheelhouse (I'm sorry to admit that's most things), I need to figure out how to do it and whether we might have the tools in the house and where they might be. I am working on remembering that I am quite capable and trying not to be cowed when these mishaps arise. Let's just say it's a work in progress, my self confidence is not at a record high. Today though, today gave me a boost. I reached the end of the broken list, knock on wood! Before I reveal my major triumph, let me recount some of the others.

Let's start with an "easy" one, that is easy to figure out what to do from the menu of fix, outsource repair, or replace. I discovered a problem with my car on the first hot day of the season - the A/C was blowing hot air on us. Great. Obviously I was not going to attempt to fix this and the car is not ready to be replaced. I had a service appointment coming up in the following week and I hoped for the best that they could take care of it at the same time. At the service center, a couple hours and several dollars later it was discovered that there was absolutely no coolant in the AC system, the lines were tested for leaks and none were found, coolant was added to the system, and voila, I drove off with the windows rolled back up. That problem is in the rear-view mirror!

Another easy one - grill ran out of propane. This is not stressful, I have just not ever been the one to manage the grill. Luckily I'm good with gas tanks and had the new tank attached in no time. I grilled up some kebabs making sure to turn the burners down low just as Chris taught me. Low and slow, good motto for cooking the meat without charring the veggies. The plate of finished kebabs gave me a huge lift! We all chowed down with appreciation for a good, balanced dinner not eaten at 8:30pm as so many of our meals are after baseball games. (Cereal for dinner anyone? Frozen waffles? Hotdogs?)


Another easy one- I received a postcard reminder that the septic system needed pumping. Oh good, I had no idea when we did that last nor what company we used. I made the appointment, dug out the tank lid, the guy came and pumped it out, and all was reported to look good. Whew. That septic system is original to the house and sometimes weighs on my mind as a major problem just waiting to happen, but today's worries are enough for today. Maintenance item crossed off the list.

Here's one that was harder - at roughly the same time I discovered the problem with the car, the dryer quit working with a mysterious error code. To start, I employed my usual electronic repair attempt, turn it off and back on. It lit up when I turned it on and clicked when I hit start, but nothing happened. Per the infinite wisdom of the internet, I turned it off, unplugged it for several minutes, plugged it back in, crossed my fingers, and turned it back on. Still no dice. There must be a real reason... Next, I cleared the top of the dryer of miscellaneous items without another designated home, pulled it away from the wall, disconnected the tubular foil-like vent, and a cloud of dust and lint poured forth. When I looked into the vent, I could see that it had a thick coating of dusty lint as far as I could see. This was rapidly becoming less fun but at the same time, my hopes were up that I could fix this right away. I realized that among the items I had hastily taken off the top of the dryer was a long, thin, flexible brush. Aha! Chris must have used this to clean the vent. Without thinking or proper planning, I stuck it up the vent and scraped it along the insides and of course more dust and lint rained down on me. I scrunched the vent tubing together and worked the brush as far as I could. By the time I called that finished, I was more dirty than I think I might ever have been and repulsed that "clean" clothes could generate this much filth. Channeling Chris, I thoroughly vacuumed the space behind the dryer and the insides of the dryer lint filter. Then I reconnected the vent, pushed the dryer back in, plugged it in, held my breath, and turned it on. The darn thing emitted the same unproductive click. $%*&! I was at the end of what I could do myself, time as two kids were getting hangry upstairs, and my patience. I do laundry almost every day to keep the uniforms at the ready! Moreover it's been extremely rainy and air-drying clothes takes forever. I couldn't remember bringing an appliance repair person to the house before, so I didn't have a name ready to call. Back to the ever useful internet, found the town parent share FB page, found a name, made the call. The guy texted me back as I was leaving a voice message, came a few days later, and had the dryer apart in no time revealing an obliterated belt and melted pulley. Thirty minutes and several dollars later, the dryer works and I now have a person to text when the next appliance needs repairing. Also the vent is a lot cleaner, so there's that. I did that.

Fourth up: gas powered trimmer. The same day the dryer broke we had been doing some yard work. A few times a season we get tired of the overgrowth and trim the weeds, especially along the stone wall that Chris put in. There's poison ivy persistently sneaking from behind the stone wall and the weed trimmer helps hold it back. I have used this tool before and it's kind of fun. When I took it out of the shed, I smelled gas and N called out that it was leaking. We instantly saw the problem - a fuel line had degraded and broken. The return line looked dubious as well. Sigh... This looks like a minor problem that someone with know-how could fix. At first I assumed that would not be me and what a pain to figure out who that would be, but I went back to the internet and discovered that this is a common maintenance issue and easy to do. Off to Home Depot for a fuel line repair kit and I was ready to go. Unfortunately I should have continued my inspection of the tool before buying parts because the fuel filter disintegrated in my hands. Back to the store, which did not have the filter. I ordered it. Several days later it arrived. Once it did, I was able to make the repair with little issue. With some coaxing, the engine started! For approximately two minutes I triumphantly whacked weeds but then it stopped cutting them. The cutting string needed replacement. Sigh. Am I going to have to order this, too? I decided to search the usual places that Chris kept stuff like this. I found gas powered trimmer oil in the garage which will be helpful, and then in the shed I found a pack of unlabeled, wire-like, small, U-shaped cables. I disassembled the trimmer head and removed the busted up cutter "string", compared it to the pack, and smiled. Oh yes. I was going to fix this today, gosh darn it. It took a little bit to load the new cutter cable and put the trimmer head back together, maybe a few swears slipped out as some metal guide pieces kept falling out, but in the end I was successful. Goodbye poison ivy! This was a major do-it-yourself victory for me.

before

after

I could end this journal entry here with logistical, problem-solving decisions and I have half a mind to because I'm feeling ridiculously pleased with myself, but of course these types of new-to-me situations are only a part of my responsibilities. Parenting is replete with big, weighty choices as well as a million small ones. I wish Chris was here to parent our children, of course. He was really good at it. We had more than a decade of wading through together and we helped each other improve, and we built each other's confidence. We knew these children best and laid a strong foundation, and this helped us guide them together through terminal illness. When the situation became dire, we did get some coaching from a special program at MGH called Parenting At a Challenging Time (PACT) but we were pleased that our intuition was usually in line with the advice we received. When I anticipated the time after Chris's death, I worried a lot about being enough parent, the right parent, for the kids.

In retrospect, I see that we were very lucky that Chris did as well as he did for as long as he did. He made modifications and remained a fully present parent until just a few days before he died. When Chris declined rapidly, went to the hospice house, and died, I suddenly had to wing parenting because the situation changed quickly in unpredictable ways. My children needed the hard truths and I had to be direct with information. I could not consult Chris about the exact right time to tell them he would die, I had to make that call myself. When I did, there was no sugar-coating the fact that Dad was going to die. Soon. I had to explain what hospice meant and how it was different than Dad's hospital stay. Those were the right choices, but it still didn't prevent or ease the worst moment of my parenting experience - breaking the news to the kids that Chris had died. I had to do it and I did the best I could. When one asked repeated questions about cremation, I had to pony up and work through that honestly. When I saw that each child needed something different at Chris's memorial service, I had no qualms about letting one roughly wipe his nose on me and the other sit with cousins instead of me. It's what they needed, who cares what anyone else thought.

I managed all that and more by myself. Now that I think back on it, I see that I did not have time to get in my own way with self-doubt. The intensity of the situation required me to manage many things right away, parenting included, with no spare time to second guess decisions. I know I did the very best I could with each parenting move and I have zero regrets about any of them.

Following my intuition with what my children need has served me well in the time since Chris's death. This is not to say that it has been all smooth sailing or that I do not make mistakes, but it has not been as difficult as I feared when I anticipated this time. (I am SURE that I will regret writing those words since thirteen is coming in less than a year...) I thought it would be extremely difficult for obvious reasons, but also because I would constantly doubt myself. However, that element has not been part of the equation. I see that the unusual, intense, sad circumstances of Chris's illness brought us very close together as a family of four and now that it is just the three of us, I do not doubt my role with our children in the wake of his death. No matter how well I parent them or how many mistakes I make, there is nobody better suited to guide these children than me now that Chris is gone. Nobody else quite knows what it was and is like in our family in the way I do. We lived it together.

Things will change, they always do. There will be plenty of situations in which I do not know what to do. I hope that I can continue to improve my self-confidence and not worry about whether I am up for those situations. Nobody knows what to do in all cases, it is just not possible, and I am no different. But, I'm perfectly capable of identifying and tapping resources to manage new-to-me problems. 

Why Throw it All on the Internet?

It helped to write to Chris directly. That last post was like opening a pressure relief valve, I felt better after writing it. I was hesitant to post it here and I almost kept it for myself, but I decided to keep doing this crazy thing of putting it "out there." Why do I do this? I wouldn't blame anyone if they were a little surprised or uncomfortable; it does go against how we operated during the good years of the brain tumor journey when we were tight-lipped about it. At the end of his life, Chris lost a great deal but he realized he could still share his experience, and we finally set up a CaringBridge site and of course we worked with Health Story Collaborative. We both got an incredible amount of value from the process of working together to write posts and record our conversations. It brought us closer together and it let other people in. We also were supported by our CaringBridge readers who received our updates and musings on life with the greatest care, concern, and respect. Why keep going now that the health crisis is over, though?

Over the last decade plus as we dealt with the brain tumor, I was drawn to others' stories. Not just brain cancer, although those were of keen interest to me, but any kind of human struggle. I do not personally know the pain of pregnancy loss nor the death of an infant or child, and I do not know the grief that comes when a parent dies, but I have followed some narratives centered on these losses. When brave souls posted/published and I read or listened, I learned a great deal. Sometimes I felt a bit of discomfort in my attraction to these stories - was my interest in the territory of schadenfreude? It sickened me to consider the thought, but I kept coming back to my intentions and felt confident they were not malevolent. No, before Chris's recurrence I think I was looking for inspiration on how to live when your personal world falls apart. Sadly, there are many ways that can happen...

Now that I have been sharing more and participating in healing storytelling, I think I have a firmer understanding of why people publish memoirs or just post on the internet for a small group of people. There is meaning to be found in telling the story in a way that helps someone else understand what it was like to go through it. Recalling the details and giving it over to a fellow human being forces your mind to grapple with the events that transpired. The right recipient might ask questions or make comments that gently bring out more, and this is all part of processing and bearing a hard experience. Deeply listening to someone's story is a gift, too, to both parties. I've heard it described as holding space for the storyteller. It's possible to hold a still, quiet space and receive the story just as it is, with all of its pain and without judgment. It's sometimes possible to actively listen, nod your head, smile at the funny parts, and wipe away tears at the tough parts and show the person that you are getting it, you are in her corner. Either way, when someone crosses over from sympathy to empathy it makes a difference to everyone. It fosters deep understanding and true community.

I have lost so much. The frame of my life might still be there and it might even look like the same life minus one person from a distance, but in truth a tornado came through and took it down to the studs. I now have the enormous task of grappling with the disaster, inspecting the damage, and figuring out what can be salvaged and what must be completely rebuilt. When this happens in reality, the repaired house never looks the same. There are always updates and improvements, possibly some silver linings though the construction timeline never stays on track. In order for my future overhauled life to be constructed, I can't just use duct tape and hot glue to try to keep the old parts together. Trust me that doesn't work. I've already found that my heart isn't in it when I fall back on my old ways. I need to find my own new path forward. Small steps include coaching baseball and adopting a hound and fixing a gas weed trimmer and spending a lot of time in my head, things that might sound insignificant but have moved me along. Bigger steps are coming in time, I hope. Sharing our story is already one. Holding space for others is, too.

Missing You So Much

I miss you so much, my love. Sometimes I can't stand it and I have to remove myself from the kids, lie down on the floor downstairs, and cry into the carpet. I'm just having one of those days today. I can't make small talk, I can't pretend things are OK, I'm thinking about you every minute.

Six months ago we were at an appointment as things were getting really bad. Regret hangs heavy over my memory of that day. I should have asked more pointed questions, pushed harder, advocated better for you. I wish I could have done better by you to ease your way out of the world. I wish I could have been better for you. 

I miss you so much. I love you so much. I am so sorry. MissYouLoveYouSoSorry. A million times over.

My heart has been waiting for you to come back to us even as it misses you with every beat. I don't know what to do without you. You made everything safe and fun and special, and now everything is duller, desperate, less than, lacking, missing. You wanted us to be happy and I am trying hard, but sometimes I have to give in for a little while. I can't force it.

I am so tired, Chris. It has been such a long slog over these years. You obviously know better than anyone how hard it was... You always advised me to go to bed and get a good night's sleep on the worst days. Always wise, you said that everything is easier when rested. You loved me so well that I have those memories to go back to. Thank you.

Tomorrow will be a new day. I wish you could be here to greet it with us. I'll try to make the most of it.

Phoenix, Puppying Us Forward

I want to put some thoughts down about Phoenix, but sharing them feels a little silly. No matter, I've gained a lot from being open in this chapter of my life. Here goes.

I've always wanted a dog, but there hasn't been a good opportunity. Grad school had too many long hours in lab and then once I met Chris, he was so allergic to dogs that a canine companion was out of the question. In the last year as it became clear that Chris would die, every now and then a thought crossed my mind - when he is gone, we will get a dog to help us heal. It was not something I talked to Chris about just as I tried not to burden him with most of my concerns for the future. In general, I tried to focus on the moment and not make any more plans for after than necessary. Chris had enough to worry or feel bad about and there would be time enough later. But, the idea was in the deep recesses of my mind. Sometimes in the wee hours of sleepless late December nights when I felt absolutely hopeless and alone, the thought would bubble to my mind's surface and wink there for a minute like a tiny string of holiday lights before I extinguished it. Even in those dire, desperate days, it was nearly impossible to fathom that Chris would actually be gone and I couldn't sit with that thought for long.

And of course Chris did die and we had to begin to face life without him. N basically read my mind and quickly asked if we could get a dog. The three of us agreed to work together to find a dog we all liked and move forward only when we were all happy with the decision. I cautioned them that it would take time, perhaps over the summer when my classes were done. Once we opened our hearts with serious intention, though, two of us wanted our dog N-O-W. We felt strongly that we would rescue a dog because we needed rescuing of our own by our new pet, and we started visiting shelters in search of a young adult dog who was already house broken so we could adopt him/her immediately. This turned out to be much more difficult than I anticipated. Many of the adult dogs in shelters had problems that we were not equipped to handle or were not deemed good with kids or simply had too little information for me to feel confident. We started considering a puppy to build his/her training from the ground up, seeing the potential for a strong bond from the start. It took a while to figure out if a puppy could work for us and then it took a few weeks to find her (and a couple of very disappointing trips to shelters), but Phoenix was worth all of it. We found her through the Great Dog Rescue New England, a shelterless rescue organization that largely brings dogs up from the South. Many times you have to adopt the dog without meeting him/her, but some of their dogs are fostered in New England and you can visit them, which was the case for Phoenix. We saw her "baby" picture on Petfinder and put in an application. She looked sweet, and the circumstances of her birthday and rescue name seemed poignantly fitting. As our irreplaceable person was leaving this world, our canine companion was entering to help us move forward and rise from the ashes of our old life.

baby pic, maybe 6 weeks old

After a phone interview, Phoenix's foster mom sent us more pictures and a video of the puppy's mother. We got really excited and then Phoenix came to meet us at our house since the organization does a home visit as part of their screening process. We "passed" since we do not hoard animals nor fight dogs in the basement, and Phoenix delighted all of us and passed our family "test" - this was becoming reality!

We picked Phoenix up on March 28th. Within minutes of arriving home upon adoption, she saw the dog bed we had purchased for her and jumped in it, knowing it was hers. Within 24 hours, she began to run to me when she was scared. The kids marveled over how fast Phoenix recognized I was the boss and her "mom." She slid right into our home and life, instantly becoming a member of our family.

Going home, about 10 weeks old

This is my bed!

Now that we know her better, Phoenix is an excellent pup - mostly friendly with dogs and people, not very barky, snuggly, and smart. She has made huge strides in house training, and she knows many commands and chooses to follow them sometimes. She hates rain and cold, and absolutely loves the sun. In fact Phoenix will roll on her back in the sun in favor of walking! She used to hate going for walks leaving from our house, but has recently gotten much better. Phoenix is my trail walking buddy, tromping around the local conservation land and state parks with me and sometimes my friends. We took her to baseball this week and she was the model dog, I was so proud! Phoenix is growing quickly and resembles a colt or black lamb with her long legs. Now that the neighbors have a six pound puppy the same age, I call Phoenix my giant puppy for she is enormous in comparison. Our pup was listed as a lab mix, but she may not have much lab in her. It doesn't matter what breed(s) she is, we have fallen in love with our houndish mutt, never to turn back.

near baseball fields

at local conservation land, the tree cluster that brings Chris to mind

she's been to work with me

she looooooves the sun

getting to be a long-legged regal girl

Phoenix is working some puppy magic in our family. Although she could never fill it, she provides a welcome distraction from the vast void left by Chris's death. It's not that we aren't sad or don't think about Chris, it is that Phoenix puppies us gently forward in this new chapter. Why do I use puppy as a verb? It just fits. Phoenix puppies around in the yard and amuses us with her antics - frantic chasing after a toy, lazy ecstatic rolling in the sun, pulling out her play stance on us, herding us, prancing away when she's got something she shouldn't have. She puppies around in the kitchen putting her paws and nose up where she shouldn't, poking her head on our legs to be petted, sniffing around for food, licking the floor where someone spilled, chasing her tail. Phoenix puppies around in calm ways, too, sitting next to the vent where warm air comes out and slowly walking to her beloved dog bed to lie down late at night. Best of all she puppies our broken hearts by greeting each of us with a waggy tail and excited wiggles, making us laugh with her funny woofs and hound howls, cuddling on the couch, and snuggling at night in bed with each of us in turn. She is indeed our therapy puppy.

bedtime hugs

boy loves dog, dog loves boy

let's face it, she's my buddy

More than a few people have said to me that Chris would be very pleased about Phoenix joining our family. I wholeheartedly agree - Chris was crystal clear that he wished us happiness. It was hard to imagine how we could ever find those bluest of blue skies and better things that he emphatically wanted for us, but Phoenix fits the bill. Chris would get a huge kick out of the humorous situations with Phoenix and gently rib me when I complain about bad dog behavior "this was your idea you know." If Chris could somehow see our new smiles and snuggles I know it would bring joy to his heart, too. He would know we have not replaced him, we never could, but instead we added new love and he would see that it is helping us show our best selves to each other. I think he would be proud of us for taking this step.

I feel unsure a lot of the time in this time of adjusting to Chris's absence and being single. Making decisions without my copilot is hard. This dog decision was, too, but because Chris was so allergic to dogs, it felt appropriate that I handled it on my own. There were a lot of questions to wade through. Could I handle all of the work as the solo adult on top of single parenting two children? Would I have enough time to adequately tend to a puppy (and later, adult dog) with my job and our lifestyle? What would the expense be like? How would we manage vacation? At some point I finally came at it like this - I don't get to have my husband anymore and the kids don't get to have a living dad, but we CAN have a puppy. It's not rocket science. I handled much harder and weightier things in the last two years, I can manage this. People do this all the time. So I basically closed my eyes and leaped, and it turned out to be the best decision I could have made. And, I did it all by myself. As it turns out, I am quite capable of doing a lot of things solo. Phoenix is puppying me along in my journey to believe in myself, try new things, and be more open, and she puppies me to help bear my grief. I think the kids feel the same way. I sure hope they do.   

Health Story Collaborative Healing Storytelling Session

So I did this thing tonight. It was not something that I felt comfortable about as it approached, but it was an event I'll remember for a lifetime. I was offered the chance to work with Health Story Collaborative on a different project. The idea was to work with a medical student to craft a narrative of our story and then present it in a live "healing storytelling" session with three other people and an audience of invited guests. Now writing has been a balm, but the talking part, well, I'm still figuring that piece out. Balance has not yet been achieved between saying too much and completely avoiding the elephant in the room. Add to that I'm an introvert, so public speaking isn't my favorite thing. Of course that is unless you need an extended lecture on the intricacies of SN1 vs SN2 reactions, then I can deliver with enthusiasm and a PowerPoint presentation complete with (funny to me) illustrative YouTube videos!

The session tonight was amazing, and not only because I got to tell our story to a captive and super polite audience, but because the stories of the other three participants were incredibly moving. They were engaging, sincere, brave, one really knew how to build in suspense. Some storytellers even brought props! I did not... What could I have brought? A picture of a bad brain MRI lit up with tumor? (We have some of those downloaded from Chris's phone but I do not choose to look at them.) Seriously, the event was transformational due to the human connections in the room between strangers. I'm incredibly grateful that I had the chance to participate and attend, and for my special guests who came to listen. 

I'm dropping the written form of my narrative here. It was different at the event because I tried not to read from it and also I tried to respond to some points that I thought about while listening to others. In some ways it was probably better in spoken form and in some ways I wished I would have just read the thing. It hadn't been the best grief day and I thought I was going to cry my way through it, but it ended up OK after I regained my composure early on. 

This is for Chris, and this is for me. It's also for the kids and the Davie and Colby families who lived it with us but had different perspectives. It's also for every caring friend who has supported us along the way and wanted to help/understand; I haven't always known how or when to share effectively. This is an attempt. 

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Before it all began, we were just regular people, living our quiet life and growing into a marriage. I often shake my head in disbelief that something as dramatic as a brain tumor happened to such a boring couple. You see, we met in a hotbed of nerd-dom, MIT, in a graduate program for organic chemistry. I had come from a small college and felt behind academically, and most of my peers had come with serious relationships while I knew nobody. As I struggled to find my way, I noticed Chris. He exuded calm and kindness in a competitive, charged environment. After a helpful prod from a mutual friend, I summoned the nerve to ask Chris out for a visit to the Harvard Museum of Natural History on our day off from lab. He accepted and asked me to lunch the day before our date. He surprised me by being funny and talkative, and we hit it off. Our time at the museum was almost magical. As it was about to close, Chris and I entered the Earth and Planetary Science room full of minerals and rocks. It was dark outside and the display cases of gems seemed to shine brightly in contrast, and I was also shining with happiness. We extended our time together with dinner, then again with coffee. I felt lucky.

We bonded quickly over our shared interests in organic chemistry, teaching, and family. Unlike most of our peers, Chris had a rich life outside of school, full of family and friends. Rapidly our separate worlds became entwined. We were a team: best friends, partners, each the biggest supporter of the other. He did not ask me to marry him, we decided together. He did not surprise me with a ring, we chose one together. We turned to each other to debrief about work, to discuss our worries, to make plans. We didn’t need much outside of our private world.

In 2007, we were three years into our marriage and everything was just taking off. I landed my first “real” job, we bought our house, we had our first child Nathan, and we turned 30.  On the last day of 2007, everything turned upside down never to quite right itself again. We were in the Midwest visiting my family, headed to a New Year’s Eve gathering. Chris, luckily not driving, began acting strangely. It was the shock of my life to see my husband unresponsive and in uncontrolled motion, experiencing what I would later learn was a grand mal seizure. I fished Chris’s cell phone out of his pocket and called 911 in a panic. At the hospital, Chris was given anti-seizure medications and sent straight off for a CT scan. Soon after, a clearly experienced doctor broke the news - the seizure was caused by a mass in Chris’s brain. In my shock, the only thing I could ask was, “is it big?” The answer was not encouraging; it was “fairly good-sized.”

Time seemed to unfurl differently after that. Moments blended together in a haze of shock. We flew back to Boston, Chris slept on the plane with our son napping across our laps. My mind was buzzing with white noise, there was only one thought that stood out with clarity – what is going to happen? There would be no quick answer to that… 

January was a dark, confusing time as we chased all over the Boston area in search of the right medical team. Finally, we landed at MGH. Chris had an aggressive, awake craniotomy on one of the longest days of my life. The rest of the year was a dark blur of a difficult recovery from the surgery, daily radiation treatments, cognitive rehab appointments and a terrifying uncertainty. We also had a perplexing diagnosis for Chris – low grade glioma. The doctors were absolutely clear: there is no cure, the tumor would come back and be more aggressive, but the prognosis was that Chris would likely live for 10-20 years.

At first the disease surveillance scans were frequent. Gradually the time between them lengthened as they came back stable. As partners, our shock turned to coping with a long-term disease. We took things one day at a time, waking up, readying our son for daycare, working. When one of us had a particularly bad day, we learned to get through it by staying in motion. Vigorous house-cleaning, raking the yard, cooking on the grill – these things provided helpful distractions. Through it all we had each other. We talked about everything as we always had, but we became even closer. Slowly, our life did return to something resembling normal, but the undercurrent of wondering when the tumor would return was always there. After a couple of years, the tumor began to feel surreal and we discussed this endlessly. How could life feel this normal? Did anyone else understand that we were waiting for the other shoe to drop? There were no days that Chris did not think about dying and no days without the incurable tumor crossing my mind, but there was still work to do, our son to raise, dinner to fix, and bills to pay.

This long-term, terminal diagnosis threw a wrench in our family plans. If we hadn’t already had a child, perhaps we would not have chosen to bring children into the situation to avoid the future pain of loss. But, our son was already on this path with us and we had always wanted to have more than one child. We interrogated the doctors about genetics and felt assured that the kids’ risk would not be higher. We “just” had to reconcile the idea of a new baby with a terminal brain tumor… Over time, “no” gradually turned to “yes” for Chris, and neither of us looked back. Our second pregnancy brought a sweet joy. The brain tumor gave us a deep appreciation for this chance at new life. Our son was thrilled when he learned he would be a big brother! One day in the middle of a science seminar, I looked down and smiled at my black and white patterned shirt wiggling in time to the first palpable baby kicks. The day we found out the baby was a little girl, Chris and I were both overjoyed and marveled at our great luck to parent a girl along with our boy.  Just before she made her entrance to the world, Chris and I slowly walked the hallways of the hospital, pausing frequently for contractions, Chris supporting me as he always did. Despite the pain, I remember thinking how improbable this moment was in light of his illness, and trying to etch it in my memory. As she was born, Chris played his favorite song The One Who Knows and we both shed happy tears. We delighted in this little girl, knowing that nothing about life was guaranteed and still, here she was somehow.

As our family expanded to four, the richness of life also expanded. Chris reveled in being a dad – he was funny, always able to diffuse difficult moments with a joke. He was kind, quick to enfold his children in hugs. Chris grew professionally, becoming a leader at work. For several years life was a beautiful, normal dance of “do you need to leave early this morning, I’ll pick the kids up tonight, can you grab some milk on the way home, do we have plans this weekend, let’s go out for pizza.”

That is, until the tumor came back. It’s interesting, when I anticipated the recurrence, I always thought it would be instantly devastating, like falling off a cliff. Instead, we found that recurrence was gradual but progressive. It happened like this: Chris experienced a slight uptick in focal seizures in the months leading up to his annual MRI.  Instead of the usual “looks good” post-appointment text, I received one that just read “appointment over.” Chris reported that there was an area of concern that could be tumor growth. A biopsy revealed Grade 3 tumor, more aggressive than before, but still, Chris was himself. We were lucky in that respect. He entered a clinical trial and chased all over Boston for special MRI scans and long hospital days, all the while keeping fastidious track of cycle days, medications, and symptoms. We were worried, but we were doing something about the tumor.

Things went smoothly, until the awful day Chris's clinical trial doctor popped her head in the exam room to exclaim that his tumor had shrunk by 30%, but soon came back to say no, sorry, there was a mistake in the software measurements. The tumor had actually grown so much Chris was ineligible for the clinical trial.

After four months of normal time on Temodar treatment and a stable MRI, Chris had a grand mal seizure once again. The dread of the next MRI scan was sickening, and it brought worse news than we imagined – not only was the tumor growing but it was also infiltrating a second area. Another biopsy revealed that the tumor had progressed to glioblastoma. But still, Chris was himself, working on his laptop not 48 hours past brain surgery.

But then, Chris declined suddenly. He began having lengthy focal seizures, his vision deteriorated, and reading was problematic. He went on emergency radiation treatments and last resort Avastin infusions. After a whirlwind of daily hospital trips, we had to wait and watch how the tumor responded.

We were on borrowed time. We did unpleasant things: estate planning, transitioning all of the bills to me. Chris showed me where the water shutoff to the house was and where to find manuals for the lawnmower and snowblower. Those discussions about how to carry on without him were excruciating. Chris’s main concern was that the family would be taken care of, and in light of the painful fact that he would soon die, he did everything he could to ensure it. Most importantly, we tried to be present for each other and the kids. We noted how difficult it was to “live in the moment” for an extended period of time, but we tried. We enjoyed simple moments, knowing that there would not be many left: walks together, date lunches, family outings, time at the park, beach trips. Chris did not feel the urge to check off an ambitious bucket list, but rather he treasured the kind of togetherness that can be so easily taken for granted.

All the while, we braced for the worst. For a few months, it didn’t come and we started to muse over the fact that it had not happened. Summer turned to fall before the tumor grew, but still Chris did relatively well even after we received this news. Our hearts were full and breaking as we fit in lots of lasts – last Halloween, Chris’s 41^st birthday, trip to the Midwest to see family, Thanksgiving. As the holidays approached we knew that if Chris made it to them, they would be the last as a family of four.

As we were preparing to leave the house to pick out a Christmas tree, Chris had a grand mal seizure. Just as he came out of it, another started. I did my best to stay calm and administer medication, but then a third seizure started. He was taken by ambulance to the ER and almost died from respiratory depression. Somehow, Chris made it through. We were lucky. We had not been ready to say goodbye despite all of our preparation.

Chris came home by ambulance on hospice services. It was a terribly difficult December as his right side weakened, seizure activity increased, the number of medications was overwhelming, and the end was drawing close. We set small goals, trying to make it through Christmas and have a nice family time. Somehow we did, but afterwards Chris was less peaceful and I could no longer care for him well. In our past discussions about this end stage we had always prioritized Chris being at home but realized things could get out of hand and a hospice facility might be needed. Chris had wanted to shield his children from the worst of his decline. The moment arrived when he felt he should not be at home and I agreed.

On yet another difficult New Year’s Eve, we got word mid-morning that a bed opened at a hospice house, and Chris left our home by ambulance, just a couple of hours later. To say it was hard to watch him leave doesn’t begin to touch the emptiness of that moment. As he was loaded into the ambulance, Chris lay on a gurney facing the front of the house we bought together and raised our family in. I often wonder what was going through his mind. Was he desperately sad? The kids and I had to watch him leave, knowing he would never return to us, and we cried together for a few minutes after he left. My solitary journey to the hospice house was marked by shock that this was actually happening. Despite my wanting time to stop, Chris faded over the next eight days. He was mostly peaceful, always loving, and truly serene in the end. When he could no longer speak, he telegraphed his love by winking his good eye slowly several times. Chris died on January 8^th.

Chris’s brain tumor changed the course of his life and ended it early. It shaped mine, too, and that of our children, in ways that we are only just discovering. Telling this journey is something that helps me process everything. But, Chris was so much more than this terrible cancer. Before the tumor was discovered Chris already embodied gentleness, loved a good laugh, was whip smart, always kind, and steadfast in his love for family and friends. These things did not change in the face of terminal illness. If anything, Chris doubled down on the way he lived knowing his life would not be a long one.

Now, Chris is gone and I’m no longer dreading his death but I’m desperately missing and loving him in his absence. I am left with a hundred thousand memories to carry as my life continues without my partner. I move forward reluctantly but still, I move forward. I am learning about myself and my capability as an individual. When things seem hard, I remember Chris’s unwavering opinion that I could do it, whatever “it” was, and I remember how he managed so admirably under his impossible circumstances. On my better days I focus on the feeling of being lucky. I was lucky to know Chris, to learn from him, to love and be loved by him, and to share a life with him. I told Chris before and I will say it again now, in a heartbeat I would do everything all over again with him.   

Looking Straight On

Time continues to tick by. I've lost track of the exact number of days and weeks since Chris died, but four months is coming right up. I suppose it has been enough time that using months to mark the passage of time is appropriate. Inevitably that will turn to years if my health remains good as well as my fortune. It still takes my breath away that he is gone and not coming back. At the same time, we are functioning in the stark reality that Chris is not here. That dichotomy was confusing for a while and I would berate myself for not being able to be stable in a perspective, but the oscillation between disbelief and acceptance happens with enough regularity that I'm starting to get used to the pendulum swings. It would be an interesting psychological experience to analyze if it only wasn't mine...

I haven't written here much lately but not for lack of reflection - much of the time I am lost in my memories and thoughts. Mostly my writing efforts have been focused on a different project with Health Story Collaborative. This has two parts, a written narrative of our experience and a spoken healing storytelling session later this week (this is not my wheelhouse so I'm nervous). I'll post my final essay here when it is ready. It's an attempt to tell the arc of the whole story in about 2000 words. I had 3500 in my first draft and it didn't treat many of the events and feelings that I could have written about! Crafting it to make a vivid, engaging story is a different exercise than what I have been doing here for the most part, and it has been a valuable, yet draining, undertaking. I'm working with a medical student who is my editor and she has been immensely helpful and will attempt to cut it down with me. The struggle is finishing it off because the story itself doesn't feel complete. I am not inclined to tie it up with a nice shiny bow of optimism, and the trajectory of where I am now headed is not at all clear to me anyway. 

Forget the trajectory, where am I now???

I have been extremely busy. Both kids are active in town baseball and so we are at the fields almost every evening. This disrupts working, dinner, homework time, and basically everything. Until spring ball season started, we were not that busy with activities and it wasn't terribly difficult to manage kid logistics solo, but now it feels like I am over my head in the challenges of single parenting. Then we have the other stuff. Orthodontic mishap? I'm on the hook. Septic system pumping? Yep, that's me. Family share day at the elementary school? No other parent option to go, must rearrange my meetings. Car service? Well I'm the only one driving. Estate dealings? Oh for goodness sake's that goes on and yes that's my problem.

But, all of that is just stuff I'm doing, not the real status of where or how I am. This is the situation - I could easily just get consumed by doing all of the things and stop processing what happened. In fact, I do that for days at a time now. Sometimes I tell myself it's just unavoidable, life is so busy as a solo parent! There is an element of truth to that. I have never needed to balance so many things before. Under the surface, though, I feel myself avoiding something. I don't want to look at Chris's death straight on. When I do, it's too hard. Too gut-wrenching. Too sad. Too hopeless. Too damaging for my functioning. Just as you are not supposed to look directly at the sun during an eclipse, my unacknowledged-until-now rule is to guard against the direct confrontation of Chris's death to limit the emotional setback.

I ran into a fellow mom friend at a baseball game. She was kind and asked me how I was doing, saying she knew that Chris and I were always together at the games and just always together in general. She asked if I dreamed of Chris or felt his presence. It was an interesting conversation and I appreciated her taking the risk of going beyond the surface. The truth is that I do not dream of Chris often. The few times I have dreamed of him have been accompanied by a brutal smack of reality upon waking up to find him still dead, and those mornings have not been easy so I don't consciously wish to dream of Chris more often. I accept whatever dreams I remember, having no more control over them than anything else in life. I also do not feel his presence in any way. That is not to say I do not feel his love, because I do. Chris's memory and love lives in my head and my heart, and his love lives in this home. But his actual presence, no.

Only a handful of times have I thought to text Chris or tell him something for real. I think most bereaved people do this frequently and I can understand the tendency, but Chris's decline meant that we gradually lost the old ways of communicating while he was still alive and I got used to not being able to reach out and get a typical response. There was one time when I had an instinct to tell Chris that so-and-so reached out in a surprising way over his death, and then I laughed over the nonsensical nature of it all. Recently I had a flash of an inclination to text Chris when I opened N's math placement letter, and again when J got her first hit in a baseball game. But these are the exceptions, mostly I do not have to remind myself that I can't just reach Chris by phone or email or a conversation anymore.

That said, I still talk to him in my head all of the time. I can't really explain, it's not him in the old sense where I could expect a back-and-forth, it's the memory of him. Apparently a partnership doesn't end quickly. One half is gone, but I can still try to send my messages to him through time and my neuronal circuits. I am sorry. I didn't understand. I wish I could have done better by you. I miss you. I miss you a thousand times over. I love you. I love you to wherever you are and back, and a thousand times over.

The finality of Chris's absence is something that I muse over when I do look at his death straight on. When I force myself to confront it, memories of Chris from the last two years astound me. He knew. He had no illusions that he would come back to be with us in another form. He voiced his anguish over disappearing, never to find out how the kids turned out. This lit a fire under him to make the most of what time he did have. Chris talked with the people he cared about, gave the hugs, took the pictures, made the memories, left behind recordings telling us his wish that we would be happy. When others could not bear to admit he would soon be gone, including myself, he still did those important things. Chris always looked at his situation straight on. He was a magnificent and brave person.

I am trying so hard to do this, whatever this is, right. I want so much to hold Chris in my heart lovingly, gently, and peacefully, because he deserves that. The problem is that I miss him so desperately when I look at his loss straight on that nothing about it is peaceful, and nothing feels right.