(Bitter)Sweet Sixteen

When one half of a partnership has died, marking its beginning is complicated. Do you keep counting the years, or do you have to add qualifying words in front of the number like would have been? Do you celebrate something when you are actually mourning it? I have no answers. Hopefully clarity will come in future years.

A new chapter formally began in my life sixteen years ago. I didn't know it would be but a chapter and not the rest of my life... We had no idea, absolutely no clue, about what the future held. Still, I smile when I remember our earnestness. We promised to stick by each other through sickness, hard times, right up until death parted us. We did that way sooner than most people have to face up to the fact that marriage is not happily ever after. 

I dreamed of Chris a few nights ago. It was a simple vignette of Chris resting next to me. There were some words exchanged but nothing of substance, and nothing of reassurance. This is typical of the dreams of Chris that I recall, and I wonder if it means that I do vividly remember him but that my brain is reminding me that he is not coming back. It is hard to wake up from a night when I dream of Chris. I usually want to go back to sleep to find him again and it often sets the day on an unproductive, unsettled track.

In this instance, when I woke I was not upset, but I probed my memory for more details of the dream and it was only then that I realized that there was at least one other dream of Chris from that same night. Try as I did, I could not call up anything other than vague recollections. I wonder if I dream of Chris frequently but do not remember in the morning. It's another mystery in this strange experience...

...

To Chris on our 16th anniversary:

Last year I had many words, a plan, actions to take. I made a pilgrimmage to our places. I took off my rings. I was devastated but also felt strangely euphoric and nostalgic; last 7/31 was a formative experience to mark our special day for the first time without you.

I miss my rings sometimes, Chris, because their simple beauty gave my pleasure and represented the best of times we shared. My hand looks old now without them. The skin on the tops of my hands has aged quickly, like the rest of me, and the bareness of my hands without my rings seems to suit how I feel. The austerity of the absence of these adornments is better for me now as my plainness exemplifies my hollowness. I stopped wearing my necklace with our rings a few months ago, too. I took it off once, disgusted at the tarnished chain, and haven't felt the need to wear it daily since. You see, I don't need symbols to remember you. Last year I was afraid to take them off, and now I know that I don't need them.

On thinking about the rings now, I have half a mind to see if they still fit but I simply don't have the energy. I do have the innate knowledge that they would slip back on, and also recognize that the reappearance of them on my finger would feel wrong for this moment. The rings would still fit, YOU would still fit in my life if you could only come back, but you can't. I can't go back despite how much I want to.

I miss you so much. I miss our life. I don't know how to do this well without you and I don't want to do this for tens of years without you.

This 7/31 I have few cogent words, no mental clarity, no plan, no nothing. My mind is buzzing with staticky panic because I am being severely tested right now, Chris. Many people are. What would you think of the pandemic and the state of the world? I only know it would be easier and lighter if you were alive and healthy. Not only logistically, although I sorely miss your can-do nature and teamwork right now, but the mood in this house would have an air of fun. We would get through it together. Sometimes I dwell in gratitude that this global health crisis did not occur while you were really sick. It would have been too much... 

Gratitude is actually the best place to focus because the regrets hurt too much to dwell on and cannot be fixed, anyway.

I am indeed grateful. I am so lucky you said YES when I attempted to pluck you out of the cold nerd-dom of grad school. My memories of that day are only vague, but I recall your smile, gentleness, and my own giddy anticipation of something about to begin. It is similar to my memory of our wedding day - it was happy and perfect, the beginning of something new and wonderful.

Thank you. Thank you for everything.

I mean all of that sincerely, but I still can't help but say I miss you because I miss you with everything I am tonight. I wish I could go back or you could come forward with me, and I'm crying in desperation from the futility of wanting that.

You are gone and I have to keep going. I only can because you loved me so well.

I love you. I will always carry you with me.  

B

#GBMDay Tribute

July has held a number of milestones that have been difficult. When combined with the continued limitations on normal life and the ongoing uncertainty/worry about the coronavirus and the upcoming academic year, it has not been an easy time.

One of the milestone events was the second annual #GBMDay on 7/22, a nationally recognized day for glioblastoma awareness. I tuned into a number of virtual events to hear major medical and research players speak, but mostly I was interested in patient and caregiver stories. On #GBMDay, I learned of teenagers, young parents, beloved older parents, and more who face and were lost to glioblastoma. In many ways it was cathartic to find community with other families affected by brain cancer. Still, I can't help but feel it was a little like viewing an impending train wreck from the experience of someone who survived a smoldering derailment accident only to find her beloved had perished in the disaster. It was both hard to look away on that day and hard to sit in that community, too.

As time goes on, it feels increasingly important to share Chris with the wider brain tumor community and still wider medical and end-of-life care communities, but I struggle to understand exactly how to do this. I've heard that "making meaning" is a 6th stage of grief that many go through, and I fully feel that urge to create something good from our tremendous loss. I took a stab and spent quite a long time putting the following #GBMDay tribute together for Chris, but ended up not sharing it broadly. Here seems like a good place for now...  

#GBMDay Love Story - Chris

Chris was so good. He is so loved and missed. Cue the tears... 

18 Months

It's been weighing on me, today marks a year and a half since you left. I don't understand why it seems to matter, it's just another of the 547 days I have spent without you, but it feels like a milestone and it does feel different.

Much of the time I feel incredible gratitude for you and the blessings of our life together, but today is not one of those days.

No, today the intractable whys are front and center.

Why did it have to be you?

Why did this happen to our family? 

Why does this happen to anyone?

Why do I have to live without you?

Why wasn't it me instead of you?

WHY???

The futile whats occupy my mind, too.

What was it like for you?

What could I have done differently to ease your way?

What would you think of how the kids are doing?

What am I doing that would annoy and concern you?

What am I doing that would make you proud?

And, I'm mad. I am very angry at the normal families present at the fledgling town baseball season. I can't talk to the other parents at all because I seethe over everyone who is here when you can't be.

Even though that anger is natural, it feels shameful. For some reason I don't think you would have been loathing everything if our fates had been reversed. But then again... You were human, too. Perhaps you would have had your bad days with your own irrational feelings.

I feel selfish because I am missing with stunning acuity what you gave to me, specifically and uniquely and by choice, every single day - unwavering support, unconditional love, uncomplicated companionship. You were solidly in my corner and you always had my back, and you made sure I knew it. You chose your words carefully to say what you meant, and you sincerely meant what you said about me. Repeatedly. Yes, I can still laugh about your signature repetitiveness. You always did, too.

Today I miss you in a wounded way, in a guttural, ugly way, in a forceful way.

I @#*&ING MISS YOU!!! has run through my mind a hundred times on this day. Nice, huh?

It is a sickening feeling to be clawing at the emptiness for you in this way, for you were always gentle, kind, and calm. You somehow rose above the desolation, you were never desperate. I don't understand how you managed to live in the shadow of death for so long and still allowed the light of your love to shine so well on everyone important to you.

I don't understand why you had to go through what you did at the prime of your life.

I don't understand anything. 

There is no why, is there? It was what it was then, and now it is what it is.

I miss you.

I love you.

Terrible, Beautiful Mess

Another 4^th of July has rolled around as we continue the second calendar cycle without Chris. It was never a big holiday for us, but of course we always had time together as a family. We often camped, as Facebook thoughtfully reminded me today, presenting me with a photo album we put together entitled Franconia Fun on the 4^th! Looking at those young, happy faces sitting on flat rocks in the river nearly broke my heart.

07-04-2015

Ah, to go back to that weekend even for a few minutes... I made Chris stretch his comfort zone at a campground without running water and he never let me forget that he didn’t particularly enjoy that aspect of the trip in general, and especially not the fact he baited hooks and took fish off the line without a faucet for washing up. I never let him forget that it was a terrific campground with trails, a river, and mountains just steps away and it had a vacancy when all other places were filled. Certain people did not get enough sleep and were notoriously unpleasant on the last morning.

Despite the less than ideal points of the trip, I can see in my mind’s eye many vivid, wonderful images. There was an 8 year-old boy riding his bike around the paved loop, thrilled at his growing independence. I smile at the tiny preschool girl gently putting her baby dolls to bed in the tent. The mountain loomed dark yet benevolent above the central field as dusk settled in, and water rushed wildly over rocks polished smooth by decades, if not centuries or millennia, of that same river running in the same location. The flicker of the dying campfire held only the promise of marshmallows to be roasted and not a hint of mournfulness that it was near its end.

Yes, we had our moments of difficulty as there were bound to be with over-tired young children, but I remember how it felt to be wrapped in the comfort of our family of four. It is beautiful to remember and simultaneously terrible that it is now out of reach.

By now this is a familiar, striking contrast of emotions - thankful that it happened, devastated that it’s over. Two feelings right at the same time.

...

Tonight, I sit in the comfort of my porch and am profoundly grateful that it is not last year. Oh, last 4^th of July was an epic disaster. I thought it would be a good idea to take the kids and puppy camping. Alone. (What was I thinking?!?!)

On that particular holiday weekend, the temperature neared 100 degrees. The campground beach was closed due to high bacteria counts, the pup was on high alert at the activity around us, and nobody cheerfully helped me so I was physically exhausted. There was basically only one thing to do that everyone agreed on - while the kids biked, I walked countless loops on the campground road with Phoenix, openly weeping. Tears coursed down my face and sobs caught in my throat; I didn’t care who saw me because my only thoughts were of the past and how it was not to be anymore… To cap it off, we tried to put the kayaks in a lake near the campground but failed due to jammed parking lots. We ended up with a consolation prize DQ trip and then threw in the towel after just one night.

It is hard to remember that trip without castigating myself for the enormous flop.

But still… Look how far we have come. Just look, once again! All of us have grown immensely. Sure, the dog is no longer a puppy and is now nearly 70 pounds and each child has shot up a handful of inches, but what is more significant is that each of us possesses new coping mechanisms and we (mostly) enjoy more sophisticated dynamics to our family.

And then again, Chris is still gone. We miss him so much it cuts to the bone, our hearts quite literally hurt.

Terrible. Beautiful. Terrible. Just like that awful broken solar light outside the hospice room. I have no more control over the oscillation of feelings than I did over the annoying, random flashes of light that taunted me as sleep remained elusive and the end drew ever nearer…

...

Today a friend’s spouse died after a long experience with cancer. It is not my story to tell nor my loss to grieve, but the news nearly gutted me. I am filled with awe and gratitude for this couple’s grace under pressure and the strength of their tight-knit family. At the same time, I am slain by a deep cavern of devastation. There are simply no words to mourn the severing of this well-matched pair. My friend will now have to walk a lonely path through shattering loss.

...

Life - what a terrible, beautiful mess.