It's Not Just One Thing or Another

The clouds that gathered at the end of the day yesterday delivered a burst of winter overnight. It was forecast perfectly, about 4 inches of snow came down in the night, just as predicted. The phone call at 5am to announce a two-hour delay for school was also expected, as was the appearance of my son in my bedroom doorway at his usual wakeup time. Nothing can outwit the internal alarm clock of that boy…

We saw fuzzy snowflakes coming lazily down to rest on the heaps already covering the porch railing. The sky was beginning to lighten but we agreed that it was more than snow blowing off the trees, it was still falling. The snow was gentle and, in line with that, I did not feel anxious about the school delay or hurried to clear the driveway or worried about damage - the morning just unfolded peacefully. Once my daughter wandered out to her perch on the couch to look out the window, pancakes were requested and made while I nursed a pot of coffee. The three of us were content to be together, and then headed out to clear the driveway. By then, the snow had stopped and given way to sun. We marveled at how sparkly the snow was. It was not sticky or slushy, but light and fluffy and catching the sunlight, like a flawless snow globe just settled after shaking.

Time passed, the middle school bus came, and I was impatient for the elementary school bus to come. It wasn’t to get rid of my daughter, it was just that the sun was strong and I wanted to tromp around at the conservation land in the perfection of that snow before it began to melt and dull into something else. My eagerness to start my walk was not a feeling of desperation but rather excitement; I was looking forward to something. After she climbed the steps of the bus, I hurried to gather my things. Once again I needed my winter gear and I also wanted to bring the camera. Something in my mood made me want to try to capture this morning with the high quality lens of Chris’s camera. He hadn’t used it much in the last year due to the convenience of a smart phone or maybe something else - it was for the preservation of happy memories and it had been such a difficult year. No matter, today I would try. I wasn’t sad as I unzipped the case, not even as I figured that Chris was the last person to use it and pack it away. I was pleased to find that the battery showed some life. At the conservation land, the parking lot was not cleared as I figured it would not be. There was one set of tire tracks but the vehicle that made them was gone, and no footsteps disturbed the hill up to the trails. I had the place to myself once again and I was euphoric about that.

The ground was still bright white, feathery soft, and iridescent as the sun struck it. The magical had not yet morphed into the ordinary, I had not missed my chance to take it in. I felt a spark of happiness - the last day of literal February had offered something magnificent from winter, and this feeling was something I had not known could exist for me right now. The snow struck me as reminiscent of a happy caricature of winter, like a scene from a glittering holiday card too perfect to be real, but here it was right under my feet. Before I climbed the first hill I tried to use the camera. It was so bright I couldn’t even really see what I was doing and I'm an amateur photographer to start with. It doesn’t matter, the point is that I looked carefully, noticed the details, and appreciated it all deeply. I was cognizant that this particular moment in time wouldn’t last, it could not possibly last because of its very nature – the winter sun was reflecting light off the intricately formed snowflakes and just as it was also warming my face, it would soon turn those geometric crystals into something else less defined.

(nobody here, the trail was covered)

I proceeded slowly, playing with the camera and snapping pictures before the battery died. The only tracks on the trails seemed to be from animals, and I marveled at the perfect formation of the prints. Even though I knew there was a slick coating of ice underneath the snow and moved slowly, I still slipped frequently. And, I laughed at myself for my clumsiness. No wonder there were no other human footprints, it was treacherous underneath that fairytale blanket of snow. Right away I sought out the flowering tree that looked so forlorn yesterday and examined it in today’s brilliant light. It seemed transformed again, set off by the shimmering background. There were small, dead, star-shaped flower heads everywhere, still open to the sky such that many had collected puffs of snow. You can’t make this up, the entire scene was stunning.

(empty, dead star flowers)

I made my way up the next big hill and, as I did, I saw that the sky was perfectly clear and brilliantly blue behind starkly barren trees. The contrast struck a chord deep inside me. It stirred a memory of something that a wise friend wrote to me several weeks ago; she had lost her husband more than a decade earlier. As I walked, I remembered her words this way: grieving is not one thing or another. It crossed my mind that the depth of my harsh February state was also the height of my humanness, not just one thing or another.

The trail into the woods had no footsteps. It blended into the tree cover such that you wouldn’t easily know it was a trail unless you knew of its existence, but I did indeed know of that path. A friend had shown me in January when Chris had just died. The snow gently heaped on baby pine trees was captivating as the separated confetti flakes dispersed light. I took time to appreciate it all. It felt that somehow Nature knew I needed this extravagant display. I had to hold a few branches as I slipped and slid down the path, and at a couple of points I had to follow my instincts about where the trail was. As I emerged from the woods onto the main trail in the fields, the path was undisturbed by footprints. Once again, I was the only person who had come this way, but now the path was so familiar to me I did not need any guesses about its location. I just kept going, one foot in front of the other. 

My walks and runs are the closest I come to meditation. This is why they are important to me, they are so much more than physical exercise. Deep emotional work happens without effort or intention. Without judgment, I allow thoughts that feel profound to me but are probably just clichés, and I follow them where they want to go. I consider analogies, some deep and others less so. I invite memories, even the difficult ones, and talk to Chris in my head as if he were with me. None of it makes intellectual sense, but letting it happen is the only thing that feels like dealing with this pain and a step toward healing. Today was no exception. I did not think about work, financial matters related to Chris’s estate, or what to make for dinner. I allowed the morning to just continue to unfold, the thoughts and emotions to unspool in an undisciplined way. It was sometimes deeply sad and yes, quite a bit tending toward happy, and sometimes wistful and other times funny as I continued to forge my own path on the new snow while slipping wildly. I wished I could be here with Chris, to hold his arm and struggle over the slippery spots together.

This conservation land is my place, and ours, and his. It’s not just one thing or another. I mourned that we could not share in the winter beauty together, but I soaked it up for me, and for him. As I again thought of Chris on his last day, I imagined somehow giving this all to him just as he wanted to give every good thing to us. If I had the world to give, I’d give it all to you.

After I finally tore myself away from the beautiful place, I went straight to a coffee shop where Chris and I had spent our fall Tuesday mornings together. I treated myself to a coffee and sandwich while writing on my laptop. But first, I searched for my friend’s actual words in my email account. Oh, they are so much better than what I remembered. I’m grateful for the wisdom of my circle of friends who have gone before me. She wrote:

Grieving is not one thing and is not the same for two persons. Not unlike cancer, it moves in, and intrudes. It changes and morphs (sharp to dull, overwhelming to bearable, near to distant).

It is not only azure, cobalt, and perfection or relegated just to monotonous, steely, and gray. It is also the barren set against the blue.

It is the gray cloud moving quickly over the sun and covering it for a moment, then moving away.

It is the warmth of the full winter sun making me remove my hat and, a few minutes later, the frigid shaded wind forcing my hands up to cover my exposed ears. It is a moving line of a shadow over a field. 

It is a dangerous mass of ice existing beneath the twinkling fluffy snow, and it is taking a few confident, excited steps only to fall down hard with my bare hand dipping under snow. It is a devastating despair followed by surprising lightness. It is being deeply thankful that it all happened while being profoundly sad that it is over.

Grief is not just one thing or another, neither is love.

February

March used to be my dreaded month. Even though March holds the first day of spring, the month is mostly still winter in the places I have lived, and a long month at that, with only slight teases of spring. In a turn of positivity, both my opinion of March and my ability to cope with it has improved with my age. My children were both born in March, one near the beginning and one at the end. My professional position bestows a "spring" break in the first week and sometimes Easter holidays come later in the month which further interrupt the cold run of days. With March comes the forward turn of the clock to give more daylight during waking hours and also the eternally hopeful first spring flowers: crocuses. I look forward to seeing these small shoots poke up in the yard and open to reveal their spring colors of purple, yellow, and white. They seem brazenly optimistic as they do so at great risk of freezing in a cold snap and being buried in a snowstorm. All of these anticipated events make March easier to take.

February is a different story, though. It is one of those months that is fully contained within one season and it is decidedly winter, through and through. There are no flowers in sight. Technically February is a short month, but only on paper for me. The rhythm of the academic year makes it a long month without any holidays. Whenever I carry out the task of setting the spring lab schedule, I see four weeks in a row with the potential for a paralyzing dump of snow that must be kept in mind. Particularly since the winter of 2015 when sixty inches of snow fell in February, I have a resigned approach to the month which involves an eye on the forecast, contingency plans for school cancellations and delays, and suppression of fears about trees falling on the house and power lines. This year, the winter has not been harsh but February has seemed particularly endless. It has been my first full calendar month without Chris… This means that it is also my first full month being a widow and a single parent. I feel physically sick when I hear or read these terms and admit they relate to me, but they do indeed apply to me by the standards of the world, regardless of whether I continue to feel married or wear my rings.

I’m mentally done with February but, as I wrote before, I’m not truly on board with moving to a new season. I don’t feel ready for March with its memories and birthdays that will feel so painfully different to us. I’m not sure I can handle the increasingly hopeful outlook of my fellow New Englanders. The bitter lesson of the last several months is that time does not care what I am ready for, it will not stop because I am unprepared nor turn back because I long for it to rewind. No, time will continue to relentlessly pass and bring forth whatever must happen. All I can do is keep waking up and getting out of bed to put one foot in front of the other.

That is what I did this morning. One might even note some degree of progress since I set a small goal the night before and met it: I graded the six remaining lab reports immediately after the school bus with no procrastination involved and had time to squeeze in a walk at the conservation land before leaving for my office. I do not like running outside when it is below 20 degrees and I hate my treadmill with a passion, but walking outdoors seemed palatable for some reason. I doubled up on leggings, found my wool socks and boots, zipped my jacket lining into the outer shell, located gloves and mittens, put on my warmest hat, tucked my sunglasses into my pocket, and set off for the familiar trails.

When I pulled into the parking lot, bumping over an uneven expanse of ice and frozen mud, I doubted the need for sunglasses because the sunny sky of the early morning was clouding over. The place appeared deserted. I finished putting on my winter armor and started up the hill to the trails. Instantly I could see why I was alone here. The wind and cold were formidable but, more challenging, the path on the hill was shellacked in ice with a few frozen footprints here and there, spaced too far apart to gain a solid footing. I walked on the side of the path on some long-dead meadow grass. There wasn’t much actual snow, but rather the slippery granite-like remains of a snow-rain-freeze cycle. A phrase from a Christmas carol came to mind:

In the bleak midwinter

frosty wind made moan

earth stood hard as iron

water like a stone

Yes. Just those four lines for me, no need or desire to go further in the song today. The ground beneath my feet was hard as iron, my heart felt like a stone. Where once I could feel joy and the force of life, a drive for the future, mostly I am frozen now. Things happen around me as they do around rocks.

(It’s not quite that bad, I guess, I do things. I was out walking for goodness sakes, that’s not nothing. I completed my work, I showed up to teach, I collected some data. One foot in front of the other. Still, those four isolated lines seemed on point.)

As I always do, I thought of Chris as I walked. We walked here frequently in the last year when our life became so limited. We tried hard to make the best of a bad situation. We did together and separately put in quite an effort. Personally, I worked to check my worries for the future and live in the moment. I tried to come up with ways to make our constraints interesting and fun. But mostly, I have to give the credit to Chris. The words valiant, heroic, and courageous to describe Chris’s effort would not be hyperbolic. As we walked, Chris and I processed the experience. I remember a specific walk in early May when we talked over various medical events and decision points, and wondered if we had been able to get radiation started sooner in 2018, even by one week, would it have possibly preserved some of his reading and writing function. We both felt the need to go over everything that happened, to review the illness. I had been angry about a specific doctor’s apathy and seeming lack of attention, Chris had not been. That particular day was a stunning mid-spring day. There were flowering trees in full glory with bees buzzing here and there, all set against a gorgeous blue sky. I remember thinking about how Chris would probably be gone by the next time spring came around and recoiling at the thought. I told myself I could not think that way because it was disrespectful to consider the after while he was walking with me in the here and now, but in total honesty it was more than that; the thought of Chris being gone was too searing, the pain too intensely white hot, to allow in my consciousness.

(from that day, the picture doesn't do it justice)

Today as I walked there was no disrespect in thinking about Chris being gone. He is gone. I have not seen him in fifty days, and it has been many more since we were living anything close to normal. The absence of his gentle, kind, funny self is all I think about for most of the day. I miss him so much. I worry I am forgetting him. And yes, the pain is actually as searing and white hot as I sensed back in May. I am not strong and it burns me, badly. I cannot avoid it now and so there is no choice but to try to bear it in most situations. Walking in a deserted nature area is about as good as it gets, there was nobody around to hear my crazy person cries and see the sheen on my cheeks from the frozen tears.

Why did he have to die and I have to go on? Why did he have to die and I get to go on?

The two variations on the question rattled around in my head as I walked. “Have to” versus “get to.” The former implies a reluctant duty, the latter a privilege. Which is it? Hopefully both in time. But for now, I am meeting the responsibility of “have to” in the only way I know how. One foot in front of the other, one joyless day at a time. I'm going on but it's not pretty, just as the same flowering tree from May was totally transformed into a desolate shadow of itself to survive winter.

(I think it's the same tree, different angle. See the treacherous icy path?)

As I approached my car to go home, I did honestly (and melodramatically) think to myself that this may be the depth of winter for my soul, my own literal and figurative February. I feel completely closed off from the elements around me, barren like the trees on the conservation land trying to preserve whatever life is buried deep inside. The warmth of a personal spring and possibilities of growth are remote. The sky today thickened into a blanket of gray, later covering the sun completely and darkening on the horizon. It felt appropriate whereas the cerulean blue of yesterday would have been unwelcome.

I wondered, as Dar Williams wondered in song (albeit in a different context):

The nights were long and cold and scary, can we live through February?

I think so. Everyone says that time helps. Joe Biden promises that I’ll think of Chris with a smile instead of a tear after time passes. He should know, he has experienced more untimely loss than most people have to withstand. It’s just that I know February and it feels like it never ends when you’re in the middle of it. It’ll be February for me for a long time even when I turn the calendar page on Friday.

Time

Time is a funny thing for mourners. We want it to pass quickly yet beg for it to turn back at the same time. We want to mark it and fastidiously note what we did last year at this time, but the pain of comparison to the current day is almost too much to bear. I’ve been deep in this territory as February has dragged on. There are a lot of milestones from this month that stand out in my mind, and there will be many more to come as the days go on. The family photo calendar from 2018 was put away once the new one arrived, but it’s within easy access and I have gone to look at it several times. I still need to get the days exactly right.

February 22, 2018 – Chris had his third craniotomy for biopsy purposes. He arrived mid-day so we passed the morning at home. Instead of pacing the house like I would have, he played basketball with the kids who were on school vacation. Chris lowered the hoop and joyfully showed off his dunking skills as he awaited a scalpel to pierce his skin and a bone saw to open his cranium. Surely he knew that the results would not be good, but he did not complain. Not even once. (How? How did he do all of this?)

February 22, 2019 – Chris is gone, has been dead for 45 days.

Then,

February 23, 2018 – Chris was discharged and returned home, he walked up the stairs to our living room unassisted. I believe he even started up his work laptop after a rest and checked email. He was very much himself. He had not yet experienced the truly sinister symptoms of GBM. Chris was under no delusion that this had been a curative surgery and neither was I, but it felt like a milestone to have him back in good shape. We felt like veterans with the steroid taper schedule, intimidating stitches, and activity restrictions. It was an enormous relief to me to have him home and this procedure over even though I scolded myself for feeling that way.

February 23, 2019 – Chris is gone, has been dead for 46 days.

It’s probably a good thing that I appreciated my good day from earlier this week as just that, one good day and not the start of a pattern. It would have been disappointing if I expected something else only to be back in the pit of despair with the torture machine turned to 50.* If nothing else, all of my recent reading has shown me that my experience is not atypical. Still, it’s unfamiliar to me and nearly impossible to find a comfortable equilibrium. I always preferred nice and steady with our life, boring was just fine, so this is disorienting and the dramatic swings are hard to navigate. Without my person to debrief with, I don’t know what to do with myself.

I desperately want spring to come because the sun and prospect of warmer weather feel hopeful and I need something different. When there actually is a warmer stretch, I rebel and do not want to leave winter behind because it was Chris’s last season. I can close my eyes and remember a frigid Thanksgiving Day when I helped Chris walk to the backyard to enjoy the fire that Nathan built. I see the Christmas tree with Chris pulled up to the table next to it, the two of us picking out presents together on the internet. I want to go back, even to that hard time. Despite what I want, the calendar and world of the living tell me that Christmas is long past, the stores are past Valentine’s Day and are well on their way to spring holidays.

This is the way it goes. My wants and needs are at odds with my current abilities. I feel a strong need to add a dog to our family but feel paralyzed about how to get it done. I want something different with work, but I cannot do my current minimal grading without severely procrastinating. Projects I was once excited about are stagnant in my lab, dormant on my laptop, far from my mind. Food is bought and a mental plan made while produce wilts in the refrigerator as I cannot figure out what to make for dinner each night. The world of functioning families anticipates summer camp and sports and vacations, but I cannot think past tomorrow or bear to imagine how to plan a fun vacation for three instead of four. I know that it is more helpful to think of happy times with Chris, but I need to feel close to him so I revisit the most recent span of time with him over and over and over in my mind, trauma and all.

I am so sorry. I don’t know what to do without you. I miss you so much. Come back. 

There’s a new thing kicking around in those unspoken chants and it’s not pretty. IT’S NOT FAIR. I’m ashamed to admit it. I’ve been going there a lot. Chris never really said that, somehow. I try to remember his calm and accepting nature, but it’s difficult to channel it as I see all kinds of people coupled up in a restaurant as I sit alone with my kids on a quiet Saturday night. Worse, I see others displaying questionable behavior and I wonder why they received a get-out-of-terminal-illness-free card while Chris died. None of it makes sense. IT’S NOT FAIR!

Now I’m alone with my thoughts, trying to conjure up a memory from about three months ago of sharing a long hug with Chris. I’m trying to remember how safe and warm it felt to be in his arms, even though I knew on that night it would not be for much longer. It was just like the time I rocked my two-week-old daughter and realized her newborn frame was rapidly gaining weight, so I closed my eyes and tried to memorize the perfect moment; I actively tried to hardwire that hug with Chris into my brain the night it happened. I recall it with perfect clarity just as I can feel the snuggly, solid weight of my long-grown baby against my shoulder. I’m trying to tap that precious memory and make it be enough to get through tonight. It’s all I have now.

I miss you. I love you.

(*Princess Bride reference)

Lighter Feeling

Today was a good day and I wanted to briefly record that feeling. Writing last night opened up some vivid memories of time with Chris that made me feel peaceful and that easier feeling lasted into today. I had a few times of sadness, but mostly I kept my mind on some of those good memories and he continued to feel close. The kids and I all slept in for a solid night's sleep, and this probably helped a lot, too. I was able to do a few things that I had desperately not wanted to do - took tax documents to my new CPA's office, made a hotel reservation for a June baseball event in New York, and talked to a financial planner. In each case it just felt good to get it done (or started as the case may be).

Since I have received no replies to my dog inquiries, Nathan and I took matters into our own hands and took a quick trip to a local humane society to look at a dog while Julia had a playdate. The joy on his face as the dog greeted him with licks, wiggles, and an outright doggie hug continues to make me smile as I think about it. We both liked this dog even though she didn't really sit on command (not even once). It was probably for the best that the staff were not convinced that she would be great with younger kids and they were not ready to adopt her out to a family with kids under 13. They took time with us, though, and we learned a few things about dog adoption while we loved on the dog. I was totally in the moment while we were there, not sad or thinking about the past or too far into the future. Instead I was simply happy imagining a furry friend joining our family. My boy was, too. We left with only a few handouts on dog adoption so it was a successful trip!

Finally, the afternoon was quite mild and ended with yet another cloudless blue sky. I went for a run and it was restorative. The sun was setting and the sky was a comforting soft blue, not too perfect to be hurtful. I imagined doing this with a dog soon.

I'm not so naive as to assume that tomorrow will feel the same, but I'm also not about to brush off the lighter feeling I have today. It is real and it is good, and I am grateful for an easier day.

There Was Never a Way Out

Absence makes the heart grow fonder or so the saying goes. I’ve been without my children for more than 24 hours due to the extended Davie family helping me by hosting them for an overnight to manage school vacation and my teaching schedule. This was a break that was very much helpful and needed, and yet I missed them so much. Some of it is borne of selfishness – the house is unbearably quiet without them clamoring for snacks, card games, a buddy for shooting hoops, snuggles. No matter the reasons, or rather for ALL the reasons, once again I am incredibly thankful for those kids. As I look forward to their return, I hope that I do not put too much pressure on them to fill my own seemingly bottomless emotional needs…

My mind has not enjoyed the quiet of the last day. It has attempted to fill the silence with rehashing memories and seeking. Something. I do not know what. Or maybe I do – my mind is seeking to fix blame for this terrible pain and find a way out. One of those tasks has been accomplished. I blame myself. I do not actually blame myself for Chris’s death; I’m not all the way over the cliff of insanity just yet. His death I do honestly accept was inevitable, the ghastly end result of a tiny biological mistake that evaded the odds, eluded cellular repair machinery, and proceeded onto a deadly path of rampant amplification. No, I don’t blame myself for his death, but instead I blame myself for feeling the despair that consumes me now.

Looking back at the arc of Chris’s illness I see that this fits into a pattern of my behavior. I continually sought to anticipate what might happen so that I could devise a plan to manage it when it did happen. Actually this is only what I told myself, what I honestly sought was to understand every possible event so that I could prevent them all from happening. I subconsciously assumed that if we were aware of every possibility that we could plan our way out. The scientist in me remembers that chance favors the prepared mind and one thing I’ll proudly own up to is that I used to be an excellent student - what I lacked with respect to innate ability I could always overcome with sustained, determined effort. I could always pull out an A or, in the case I couldn’t, outsmart the system and take the class pass/fail to preserve my GPA. I leveraged that old steely will to understand everything I could about Chris’s illness, but astonishingly, I still failed in every instance to prevent the horrific outcomes…

For years, my obsession was seizure prevention and management. In retrospect, this makes sense. Chris was diagnosed after a general (grand mal) seizure which was traumatic for me as the only witness. In the earliest days of the brain tumor and intermittently for years, I laid awake for hours listening to Chris’s sleep sounds, vigilant for signs of irregularity. I needed to know what to do, to have a plan to stop a seizure before it got out of control, because I did not want to see him convulse ever again. Also, if he did not seize, maybe that would mean the tumor would be in check. We learned about the medication Ativan which is a fast-acting anticonvulsant. It could be taken in the event that Chris had an aura.  After perusing shelves of miscellaneous medical management devices at Walgreens, I purchased key chain capsules so that Chris and I could carry the rescue medication whenever we were out. This protective measure seemed successful – Chris had years without grand mal seizures and I gradually relaxed.

Unfortunately, once the tumor returned focal (partial) seizures became a common occurrence. There were periods where these occurred on a daily or even more frequent basis. Like the day he had seven focal seizures in one day. So much for my super powers… Chris diligently worked with his neurologist and made a plan – if he felt a second focal seizure coming on, he would take Ativan. Good. Great plan. I was comfortable. Except, what happens when he has another one after taking the dose? I hadn’t thought of that until it happened. Still, focal seizures seemed not to have a long-lasting impact on Chris and he learned to deal with them. Even a few in a day seemed to cause no irreparable harm. (Good thing I didn’t know about SUDEP back then, sudden unexplained death in epilepsy, something that happens with no possible prediction or prevention method.)

Then, the dreaded thing happened on 12/29/17, only a few weeks after a stable MRI scan. Chris experienced an aura that did not turn into a focal seizure but instead deepened. He took Ativan, closed his eyes, and concentrated on staying present. It didn’t matter, the aura still spilled over into a general seizure. This was a game changer. We had executed the plan perfectly and yet it failed. Worse, he came out of it unable to speak or move his right side normally and it took a solid 45 minutes to fully recover. A deep sense of foreboding settled in; my confidence was completely shaken. I called Chris’s oncology team in Boston. It was after business hours and the answering service somehow could not find him in the system. Finally, I spoke to a resident. She talked me through what I could do to minimize risk in the coming days since we were traveling. I grilled her on what I could do if Chris had another aura that did not dissipate with Ativan. She explained the dosing limits and I felt assured that in the future I could administer more medication to prevent a general seizure. Alright then, we had a new plan.

As Chris experienced more concerning symptoms in the fall of 2018 and then his MRI showed tumor growth, the foreboding feeling intensified. Chris’s right arm became less functional and he stumbled when getting off an airplane on November 12. I began to see that physical disability was rapidly setting in and I did not know what to do. Our house is a split level and there is no way to get in and out that does not involve stairs. On Friday, November 16^th we learned that his oncologist was leaving MGH. This was only a few months after an experienced, longtime nurse practitioner had retired and I felt that nobody had eyes on the situation or an investment in Chris. On Monday, November 19^th I called the Pappas Center and left a distressed message that I did not know what was going on with Chris’s care team and needed answers. A kind nurse called me back and listened to me explain that I felt strongly that “something” was on the verge of happening that I would not be able to handle at home. I worried about Chris’s mobility and the accessibility of our home. She stated that I should call MGH if something happened and we would make a plan. The following day we had an appointment and saw no fewer than three nurses who paid attention to our (let’s be honest, my) anxiety. With Thanksgiving coming, we talked about lining up some home health services soon.

What is the expression, something about the best-laid plans… Or maybe I was right before, something DID happen that I DID NOT know how to handle; nobody had serious eyes on this situation and there was no real plan in place for the events that took place. On November 30, Chris started acting strangely. Stupidly, it took me a few minutes to recognize that he was having a doozy of an aura and I better get Ativan on board. Too late – he started to seize. But this time, it didn’t seem that Chris was unconscious. He had all the body motions of a general seizure but was making eye contact with me. Sure enough, the seizing suddenly stopped and he was totally himself. We laughed about the absurdity! Our moment of levity dissipated quickly as Chris said he thought it might happen again. I put more Ativan under his tongue but he still convulsed a second time, this time more violently and he was definitely unconscious this time. Once again he came to relatively unscathed, but he thought it wasn’t over yet. Chris took more medication, but still had another seizure. This was not going according to the plan… I had given the maximum dose and there he was, seizing in the living room chair again. A sick sense of dread started to set in. I called MGH and the resident called me back almost immediately. “You need to hang up and call 911, he may stop breathing from the Ativan.” Wait, I thought the team had told me I could give that much. That was my plan and I relied on it when I needed it. Well, so much for the plan. After Chris left in the ambulance I assumed that the EMTs would have everything under control, but apparently he seized again and they gave yet more medication and then the wheels nearly fell off the bus. As I pulled into the hospital parking lot, my phone rang. An ER doctor was asking me about what my husband’s wishes were regarding intubation because he wasn’t breathing well. Dread turned to panic. This was not at all what we expected at the end… I was not ready for this night to be the end despite my intellectual acceptance that Chris would not be living much longer.

While Chris did survive that night, he was never the same in terms of physical ability. He came home from the hospital by ambulance because he could not walk. Hospice services came that evening, but nobody evaluated our home or asked me how I would handle helping a 5 foot 10 inch man who couldn’t walk to the bathroom. The wheelchair they delivered barely fit in the hallways. It was the beginning of a terrible four weeks. I have not been able to let go of being angry that some of the difficulties could have been lessened if only someone had been paying attention to the trajectory of Chris’s right-sided weakness and done something in advance to help us realistically plan for the end stage. Entering into home hospice in an emergency situation is not ideal; it’s better handled with an initial home evaluation which might have revealed the deficiencies of our house for handling the challenges. Maybe an appropriately sized wheelchair would have been ordered instead of whatever was available that scraped the walls and required that doors were removed to fit it through thresholds.

It’s all water under the bridge now, I suppose. Or maybe I will take part of this piece and turn it into a letter for the Pappas Center to try to help some future patients. I’ll have to take the anger out and be more factual, more constructive. Chris was never angry about these and other sub-optimal things that happened with respect to his care in the same way I was. While I was always quick to place blame on the medical team because they had knowledge and experience we didn’t, Chris always erred toward forgiveness and moving forward. He was so wise. Anger would not have given him one more minute of life, and even if it did, the quality of it would have been poor by spending it on being angry. He continues to teach me now that he is gone. I still struggle to implement his philosophy but I recognize the infinite wisdom within it.

But back to my original focus. I see that in the same way I thought we could avoid major mishaps and trauma by being educated, I thought that the way we had accepted Chris’s long approaching death would allow me to avoid the worst of the emotional pain when it happened. Surely I would not experience shock or bargaining or denial since we expected and planned for Chris’s death. That would defy logic and we had been so careful to be as pragmatic as possible.

Oh, how wrong I was. I have never been more wrong about something in my life.

While the medical situation steadily worsened over 2018, somehow Chris was still himself and hung in there for round after round of bad news. We would endure unanticipated symptoms and horrific news, but still be able to talk it over and cry together. As we both expressed in many ways, we became closer than ever in the last year. The pain of separation is just as piercing as it would have been in the instance of his unexpected death. Maybe more since we used the advanced notice to talk intentionally and love deeply and treasure the gift of being together. No amount of time would have been enough or prepared me to lose Chris.   

Last night as I railed against the desolate silence in my house which contained no sign of any of my family members, I could not bear it for one more second. I fled to the library. I searched through the biography section to find The Year of Magical Thinking by Joan Didion, another of the memoirs I had read in recent years. I sat at a table in a deserted reading room, turned on a lamp to soften the harsh fluorescent light, and read for more than an hour. The familiar words of this exceptional writer helped me. Despite her brilliance, Didion also struggled with irrational lines of thinking in the wake of her husband’s sudden death.

“Grief turns out to be a place none of us know until we reach it.”

Yes. Yes. There had been absolutely no way of knowing ahead of time. Therefore, I could not have avoided this pain. Thank you, Joan. The kinship I felt with Didion intensified as I read. She also felt worse after her husband’s funeral. She put it this way:

“We have no way of knowing that the funeral itself will be anodyne, a kind of narcotic regression in which we are wrapped in the care of others and the gravity and meaning of the occasion. Nor can we know ahead of the fact (and here lies the heart of the difference between grief as we imagine it and grief as it is) the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.”

Didion articulated it eloquently but I’ll just describe it as operating out of robot mode. Chris’s memorial service was no problem. In fact, it was strangely enjoyable to talk with so many people who loved him. A psychologist would probably call it being in a state of shock. What is more, my recent spells of deepening despair during which I cannot bear to imagine an unending succession of silent evenings, nor comprehend my solitary future, have been validated.

Finally, Joan Didion also felt so close to her husband, so much one half of a perfect whole, that she could not imagine going on without him. She wrote:

“I remember thinking that I needed to discuss this with John. There was nothing I did not discuss with John … I did not always think he was right nor did he always think I was right but we were each the person the other trusted. There was no separation between our investments or interests in any given situation.” 

My evening of reading (and I’ll be truthful here, yet more leaking of tears in the library) did provide something I can’t quite name. I am not remotely close to calling it healing. Resonance is a word I often reach for and, I see from re-reading, validation. It is some kind of recognition of the destiny of being human: nobody escapes unscathed by loss in some form. I’m not special and apparently not as odd as I have feared.

As it turns out, there was never any way out. Just as there was no way to avoid the inevitable death of Chris, there were no real measures that could be taken to soften the blow. The love we shared was the most honest, precious thing I’ve known. The loss of one half of our partnership could not be lessened no matter the amount of preparation.

------------

Writing has been extremely therapeutic. As I wrote about Chris’s seizures on 11/30, the memory of sharing incredulity and laughter between the first and second seizures came back with crystal clarity. I know it might seem crazy, but I am smiling thinking of it again now. Obviously not because it happened, but because that moment was so representative of how we were in it together. Chris feels close to me again right now. Now that I’m alone, I’ve been worried that my memory is not accurate and I made up how close we were. But no, it was real. It was rich. We understood each other fully.

While I would not want him to have to go through his final decline again, I would give anything to have even a day of difficult time back. I love him so much. Here we are on 11/20 on a “date” before going to MGH exactly three months ago. We were at our old stomping grounds, the Cambridge Brewing Company. It was a really nice time spent reminiscing and just being together. This was the third to last time we went out together and probably the happiest of those last three. I see the effects of the tumor on Chris's face and exhaustion in my eyes, but mostly I see his kind, gentle self and remember a treasured day. 

Better Things (?)

Chris loved music and found several particular songs very meaningful in recent years. He wrote and spoke about them for the kids and me over the last year. Chris was very clear that he wanted Better Things by Dar Williams played at his memorial service. I understood, he wanted desperately for the kids, family, and friends to see that there are still good things in life despite this terrible event. Chris wanted this so much that he wrote about the song from his hospital bed in December - he wished happiness for the kids despite the sadness his death would bring. Still, it was the hardest part of the service for me as I listened to this song that day. It was the only part of the service that made me cry. I simply cannot see how there will be better days ahead; I want so much to go backwards in time. The song did not resonate for me that day and I haven’t been able to listen to it since.

Better Things, verse 1

Here's wishing you the bluest sky
And hoping something better comes tomorrow
Hoping all the verses rhyme
And the very best of choruses to
Follow all the doubt and sadness
I know that better things are on their way

I often think about this song and Chris's love for it. Since Chris died the weather has given us several days of amazing blue winter skies. A few days have even held the tease of spring with unseasonal warmth. I have tried to lift my face to the sun and feel the positive vibe of Better Things, but so far I haven’t found anything remotely close to the feeling I had when I was with Chris. Sometimes the sun feels too strong, too perfect, as if it is mocking me. One of my children remarked on this, too, shortly after Chris died, it didn’t feel like it should be so nice out since we were so sad.

I have struggled to embrace Chris’s wish that we would find better things in life. Future happiness would be fine (please, I need hope that I won’t always feel this gutted!) but better? I can’t imagine that. When I found the voice memo Chris made about his favorite songs I was really captivated by his thoughts on Better Things. In this recording made in May, Chris was able to communicate with a bit more nuance than the dictated work from December. He spoke about really liking the song but feeling conflicted over it, too. He wanted the family to focus on good things in the future beyond the severe challenges of that time, but he knew that there might not be better days for him in terms of his condition. I think he knew that it would be hard for us to find the after time to be “better.” Hearing Chris talk about  this internal struggle made me more able to accept his wish to play the song at his service. 

I’m really struggling right now with missing Chris. Sad doesn’t get close to describing the bleakness. We are functioning. We are putting one foot in front of the other. But at least I cannot find much to be happy about. My mind just wants this to be over and for things to go back to normal. It’s ludicrous but I find myself imploring Chris to COME BACK. It’s been forty days now, that is enough suffering  for me thank you very much. We need you.

Somehow it is already school vacation week. A vacation so soon after the end of the year break is aggravating for working parents in the best of times, and this year it feels like a hell invented especially for me. The childcare will be managed just fine, but the happy plans of normal families untouched by seismic loss are like salt, lemon juice and vinegar poured into my gaping wounds all at once. If we could just keep going with our school routine it would be easier because we are doing relatively ok. Long unscheduled days are not great; it is too quiet now.

People have been extremely kind and have been inviting us for meals and activities, so we’ve been getting through weekends. A group of families in the second grade put together a fun outing for us today on the first weekend of this vacation. They bought us tickets to see The School of Rock at the Boston Opera House followed by a night at a downtown hotel with a pool. Wow. I’m telling you, the generosity of people is humbling... 

The day broke as another perfect blue sky morning. I don’t believe in Chris sending us signs, but I took note of this perfect day and attempted to embrace it. With minimal bargaining I got the kids to agree to going for a walk at some nearby conservation land. It’s a place we have walked frequently for years. I walked there a lot with Nathan strapped to my chest as a baby, and this last year Chris and I walked there frequently. I have returned many times since he died and I remember our walks and talks when I hike the familiar paths. The kids and I had a good time; sometimes silly as when we skidded on the ice-coated hills and sometimes pensive as we talked about Dad. I couldn’t classify this as a better experience than being there with him, but it was a good family time. We even took a few pictures. I’m trying here... Chris was the photographer, not me, but hey I was good for a few selfies today. Afterwards, we loaded up our overnight bags and headed into Boston.

I don’t love driving in Boston, but I have gotten a lot better at it in the last two years since Chris’s tumor returned and his seizures ramped up. He didn’t drive at all for the last year of his life and so there was no choice but for me to do it. I wasn’t too worried today and assumed the Mass Pike and Boston streets would be fairly quiet. We proceeded without issue until we got near the theater district. There was a festival in Chinatown and the streets were jammed. I had planned to find parking on the street but my blood pressure started rising as we sat at multiple intersections without moving for several light cycles. As the clock ticked toward the show start time and I couldn’t turn because there were cars blocking the road I wanted to take, I started to despair a bit.

I can’t do this without you, Chris.

I made a snap decision to head toward South Station instead of my original plan. I pulled some driving moves that I didn’t think I had in me to even attempt and somehow we found a one way street with a parking spot on the left side, on a curve. It took a bunch of tries but I parallel parked and we climbed out to read the street signs carefully. They warned of No Parking for Snow Emergencies, No Parking Except Delivery Vehicles 7am-7pm, Tow Zone! In tiny letters they also said Except Sunday. I clicked the lock button twice, heard the honk, and we headed to the theater so we wouldn’t be late. I tried to act confident, like no problem, the car will not be towed - it’s Sunday! I worried... so did one of my kids. Chris would have laughed at me and assured me it would be fine. Without him, I just started imagining how to go about retrieving a car from an impound lot.

The show was awesome. We sat really close to the front and could see the enthusiasm of the performers. The music was terrific and the show followed the movie characters really closely. It was bittersweet because Chris loved going to musicals and he got a huge kick out of the movie School of Rock, so he would have loved this performance. But we had a good time just the three of us and talked about Dad at intermission. Afterward, we found a coffee bar with nice desserts and enjoyed a treat. Happily the car was not towed. We drove over to the hotel and repeated our search for street parking. Once again I prevailed although it was next to a hydrant, so... I think I left enough space. Tomorrow is a holiday in Boston so I should be able to leave the car overnight. Should.

I really need you, Chris.

We checked into the hotel our friends so generously provided to us. The man checking us in asked me if it was Mrs. or Ms. Davie. Ummmmm. Ms? (I’m very disappointed I didn’t say Dr.) We headed up to our room. I had to concentrate hard to avoid crying. Memories of many trips and hotel stays with Chris were flooding my mind. Honeymoon, road trips, Paris, Switzerland, Orlando, Northampton, Vermont. The kids wanted to swim, so we did. I could not hold the tears in. So many families were there having fun. I did not feel like a fun parent, and there was not enough of me to go around. The kids were great and cooperative, but it used to be so much easier to have one parent stay with one child while the other managed the other kid.

We need you. Come back.

Time was slipping by and I know my kids, they needed dinner to prevent problems. We headed out in search of a good place. The restaurant we chose off my map app was closed for an event. We wandered the streets close by and places were closed or inappropriate. It was quite cold. The kids held it together and we ended up at Chipotle way too late. We ate quietly, all lost in our thoughts.

I cannot do this without you.

Back to the hotel, back to the pool. Bickering over when to leave, who pushed the elevator buttons, then into bed where one of us sleeps alone now. The equilibrium is off... I just cannot fathom doing this for the rest of their childhoods, the rest of my life. I don’t want to! I want Chris to come back. I fear I am not enough without him. I am not fun. I am too worried about things going wrong. It’s too quiet. I’m too broken. They deserve better.

The kids have long been sleeping. Chris died 40 days ago. I don’t know what to do with myself. I see that I CAN do this vacationy stuff alone and also that I have to. We can’t hide out at home forever. I’m grateful to our friends for giving us the chance to find that out. It’s been an important but difficult step forward as my feet feel immobilized in concrete.

It’s just that nothing will ever be a “better thing” without Chris. 

Difficult Tasks, Difficult Memories, and Trusting Us

Throughout the course of Chris's illness, I worried quite a lot about the future and having to take the reins on our finances, home upkeep, and car maintenance when I would inevitably need to. Chris had taken care of everything for so long and so well that we just left those responsibilities under his purview for as long as possible. It was part of living life. In the spring of 2018, there was an awful day when I came home to find Chris in a rare state of agitation because he was not sure he had dealt with a key financial issue correctly. It turns out that he had done it perfectly, but we agreed that we should change our mode of operation and we began the unpleasant task of transitioning it all to me. It was terribly hard as we sat together at the computer and, one by one, I logged onto every account and then made a new organized list of the accounts with notes about how/when each bill was paid. We did a few other things along these lines that were equally difficult, like Chris showing me things around the house and pointing out things he usually dealt with (water shutoff, generator switches, etc). It was draining work and while we did not overtly discuss how we each were feeling while doing it, I know that it was simultaneously relieving and devastating to both of us that we were doing it. 

This happened at roughly the same time we were meeting with lawyers to draw up end of life documents: medical directives, health care proxies, power of attorney, wills, etc. We had documents made for both of us but we knew full well that it was of utmost importance that they were in place for Chris. It was horrific to do this with mortality staring you in the face; we should have done it long ago so it wasn't so loaded. I'll always remember how brave Chris was to deal with estate planning in the middle of the medical crisis, and I will always feel terrible that we discussed it all with the lawyers while he had a rare raging headache. It was the first time that Chris deferred to me completely in a matter like this. I don't mean that to say he was controlling before then because he absolutely was not; Chris just always seemed to know how to do these adult things in a way that I didn't (or hadn't wanted or needed or chosen to figure out yet) and I was happy to let him take the lead in those situations. The lawyer meeting was particularly stressful and I felt uncomfortable making decisions on the fly like that. Chris's full confidence in me made it easier, though. He trusted me completely and I knew it. Just as he always had been the person who believed in me most, Chris believed I could manage this and all of the future paperwork and details even as I doubted myself.

The passing of the baton period, though difficult, was enormously helpful to being able to cope in this after period. During that transitional time I dealt with some small stuff, tackled more involved tasks, and survived dealing with the mountain of paperwork for long-term disability benefits. It built my confidence to manage these things while I could consult Chris. It was a good training ground for what was ahead: what we went through in December and January and what I'm managing now.

With respect to the now part, yesterday I spent the day at home mostly taking care of personal business. Given my recent need to reflect and write, I had temporarily set aside the long list of items to take care of in the wake Chris's death. It's a literal list that I made in a small bound black notebook that Chris used to keep track of personal tasks and medical notes. He brought it to MGH over the last two years and I got used to seeing it lie around the home computer and kitchen phone. When Chris died and I started making dreaded phone calls, I felt like I could better handle the details and emotional weight if I kept track of things in his notebook. If he could face his death by keeping notes in it, so could I. After glancing through this notebook and some of his other work notebooks, I remembered that he always drew tiny bullet points that are squares to be checked off when tasks were completed. I smiled to see that most of the boxes were unchecked; I am quite sure that list-making was one of his strategies for remembering details and not so much intended to actually be checked off. Another way to feel close to Chris is to channel some of his habits, so I constructed my list of unpleasant and important tasks with tiny boxes to check off. Only in this case, I need to keep going until the last box is actually checked...

This is not fun stuff to tackle. The time sensitive stuff is done or underway, so when I needed some breathing room I took it. But, I sensed that I was putting things off so I unearthed the black notebook from the dining room table wasteland of paper cuttings, sticker backings, red glitter, condolence cards, junk mail, work papers, and more. I deployed my expert productive procrastination by cleaning up that table. I kept trying to avoid the list and convinced myself that accomplishing anything related to Chris's death would serve the goals of this day so I went downstairs with a bag and gathered up his shoes. Pair by pair, in they went. His infrequently worn dress shoes gathering dust beneath the computer - when did he last wear them? Summer flip flops and walking sandals were lurking far under the shoe rack, I grabbed them and tossed them in the bag. I got to Chris's sneakers and casual, cool-looking pair of shoes reminiscent of bowling shoes. These gave me pause. Then, the worn leather slip-on shoes that he wore so, so often. I had put them on once to grab the mail and the kids were appalled. It was hard to let these shoes go, but the appropriate wearer is not here to use them. Into the bag. It was so full I couldn't tie it shut. My mind had not anticipated the problem of what to do with this full bag of footwear so I stuffed it in my closet. Out of sight and hopefully out of mind for a while because while in my mind the pain is nearly unbearable.

I was not in a good place, but I figured that avoiding the notebook and list would just make me feel worse. I told myself to buck up, be an adult, DO SOMETHING. I paged through the notebook to find the list. The section Chris had written in was neatly sectioned off with a clip, but to get to my list I had to pass through notes I made while planning Chris's service and from the first phone calls made to report his death. I started feeling anxious... I searched online for inroads to a couple of items and then made some calls. Every time I had to explain why I was calling I felt a little bit sick. I requested that Chris's name be removed from store credit cards, AAA membership, Amazon prime, utility accounts, and more. The anxious feeling built up with every step I took because it felt like erasing Chris. Each time I reached for his familiar wallet to find a card or his license for information, the shock of it hit me. Once so used and full, this wallet is thin as it now contains no cash and very few cards. The owner has no need for them.

Things got worse as I dove into figuring out my new health, pharmacy, and dental benefits that are generously continued through Chris's employer. These carriers are all the same as before but the accounts are new, in my name only as a survivor of an employee, with new ID numbers attached. Finally I had access to the new accounts and logged into each, one by one, to print cards. In looking at the online platform for one, I received an enormous punch to the gut - under my account profile marital status there was written "no spouse on file." That simple terse phrase hurt more than I can say; my anxiety morphed into the beginning of panic. My mind sputtered but, but, but... What happened to Christopher P Davie? How is he gone? How can this be true? What happened to my life?

A rational person would have decided to take a break at this point. Enough is enough for one day, these things can wait another day or several. Instead, I made a poor decision to keep going down the rabbit hole of health insurance exploration. I logged into Chris's account for the old benefits to check on the status of claims related to his care. There have been some problems with approval of some claims from 2018, and I very much hate the thought of unresolved issues involving a potentially very large sum of money. What is more, I want to see what the bills from the hospice house will be, pay them, and move on completely from that experience. As I loaded the claims page, I saw the many entries that I have seen before: infusions from November, ER visit claims, denied inpatient stay, the ambulance ride home that I already fought to be processed in-network, and then some new unprocessed, unfinished items from the hospice house. Because I'm a glutton for punishment, I clicked on anything not fully processed or marked denied. As I did, many difficult memories came rushing back.

I started having a hard time breathing normally, it was close to hyperventilating. This was different than the moments of missing Chris so much I could not breathe, this moment was near full blown panic. It felt a lot like the night of 11/30 when Chris very nearly died in an unexpected way in the ER (at least to us). I tried to calm down and steady my breath. I wondered what I was so worried about now, there's no point in worrying about Chris dying when it already happened. But in my mind's eye, I saw him in the ER and wondered what to do all over again as the doctors asked me about his end of life wishes and whether he would want to be intubated. Then the mental scene shifted to Chris lying in the hospital bed at the hospice house, rapidly slipping away. I remembered that long, last day that was so terribly quiet because he was unable to speak. I was filled with regrets. I should have asked for more from the staff and asked questions about his condition, but they left us alone and I did not understand just how short time was. Why did I sit there so quietly? Why didn't I just climb into his bed with him? Did he feel my exhaustion and despair? What was he thinking? Did he know how much I loved him? I know I said it a lot, but I fear that I wasn't showing it in this awful, stressful situation. There is so much trauma in these memories.

One of my great many flaws is that I need a lot of positive reinforcement to feel secure, and now I'm in a place where that is impossible to receive. Those questions won't be answered, no earthly person can provide me an answer that I will be able to embrace. I am trapped in my mind and I have started to wonder if my take on past moments was accurate at all without Chris to debrief with. The one person who always, always made everything better and safe is gone.

Gone. Gone but not forgotten. Oh, far from it. Chris is not here in the same way, but his love is. I just have to trust more in the foundation we laid and work harder to reach for the good memories and feel it. When I need positive reinforcement there are still options. They aren't the choices I want right now because I only want him back to give me a long hug and tell me I did just fine, that he understood my love, that it is okay, but there are options. So yesterday on the most difficult day yet, I went back through them.

First, my collection of audio recordings. When I hear Chris's voice on the HSC interview so strong and brave, and so loving toward me and the kids, I feel better. I did not make the good stuff all up. It is right there in his voice and his words that we were a team. I skipped to about two minutes from the end and I hear myself tell him how much I admire him for how he handled everything, and how I love him. Then there it is, his voice saying I love you. There's something in the way he says it, too. Like he can't believe what I just said because the journey has been so crazy, and it implies that he loves me that much right back.

I also revisited some do-it-yourself recordings that Chris made on his phone in May. There are some precious thoughts in these, some of them reiterated in the HSC recording but some are unique. I found an eight minute recording in which Chris talks to the kids about his favorite songs. He loved those songs and we talked about them for years, and this fall he wrote about them on CaringBridge so I know very well how important they were to him. But I heard him talking about our wedding song (When You Say Nothing At All) on this particular recording in an earnest way. He told the kids he had listened to it probably 10 times that particular day and thought a lot about the words and appreciated the meaning more now; words are not needed for love to be expressed. I heard in this recording how much I meant to him. Even though he didn't quite spell it out in those words, listening over and over to our song and leaving a legacy recording about it speaks volumes. He felt we were so connected that words were unnecessary to show our love.

This is reiterated in a CaringBridge post Chris wrote on November 27th. It was after a terrible morning when we had been having breakfast out at a diner and he had a focal seizure with vertigo. As we stood to leave, Chris could not keep his balance and could barely walk. It took all of my physical effort and concentration to get him out of that restaurant safely; I had been stressed to say the least and worried about what it all meant. He did recover from it that day, but it was an ominous sign. Tonight as I read his journal entry I find meaning that he published it on the site on that particular day. I don't think I was at my best as a care partner that day, but he wrote this anyway:

We have always talked about everything. Joke, personal, fun, etc. But I think when it comes to speaking, especially for me, I am not good at communicating our love and saying exactly how much it means to me. The song shows that words aren't always needed for two people to know they will love each other to the end and beyond. The song has become incredibly relevant as time has gone on. 

While I helped him write this entry in our inefficient, halting way, the words are his. He wanted the wording "words aren't always needed for two people to know they will love each other to the end and beyond." And beyond. I would not have written that, it's not in my nature. He specifically dictated that. And beyond. I'm feeling a message in that wording tonight now that we are beyond the end. It makes sense - I know that I still love Chris, he must still love me in whatever way that works.

Love doesn't end. I say that confidently to the kids about Chris's love for them and theirs for him, I don't feel hokey or insecure about saying that to them. Why do I struggle so much about applying it to what we shared? I am trying to trust that he didn't need the perfect words from me on his last day of life, or even any words. There is a lot of evidence in the recordings and writings I have that Chris felt supported by me and also delighted in being a team with me, and that he loved me. I am hoping that on his last day he was drawing from our strong foundation and could feel that I would have done anything to save him from that fate and, because I couldn't, I was there by his side because of my love for him.

As for me, I am trying really hard to trust that the foundation of our relationship was indeed strong enough such that it carried us through that last day. The pain of his loss doesn't negate our closeness. We never needed words, so when they literally weren't possible it didn't change anything. He knew I loved him just as I knew he loved me. (right???)