Would You Know Me?

So much time has gone by. Months and months, now over three years. Things have happened, little things, boring things, big huge things. Through it all, I often wonder...

What would you think?

I simply don't know. I could guess, but I do not have any way of knowing because you are not here. You are gone.

You are dead.

It is still shocking to me that your light has gone out. The kindness in your smile, your voice, your eyes... It will not beam on me or anyone you loved again.

How can that be? It is not fair. You were so good. So very, very good.

So yes, time has passed and you are still not here. You are not coming back. And I... Well, I have changed. I sit here tonight and know that I am not the same as I was when you were here.

For starters, I feel one hundred years old. I am bone tired from the constant managing and weight of missing. My hair is streaked with white, my body is softer, my face a little more substantial, my eyesight is declining.

Yes, the old me with boundless vigor and 20-20 vision is gone. I fall into bed exhausted every night at a shockingly early hour. My new glasses, which I have been instructed to wear as much as possible, are set to arrive tomorrow. I wonder what I'll look like with these glasses and if I'll feel totally different. My mind immediately asks...

Would you know me now?

The question nips at the back of my consciousness. I know I am quite different from when you were here, when we were Us. On the one hand, I am ashamed. I'm more jaded, bitter, depressed, leaden. On the other hand, I'm so sorry you missed out on this version of me because I manage, Chris. I handle things. I'm not only talking about the school bus just not coming for a solid week, I'm talking about Serious Crap. I'm actually decent in a crisis now. I don't know if you saw that when you were in crisis because I was so worried about doing the wrong thing and was simply AFRAID, but my competence has its origins in your decline. Your illness and death changed me.

When things go wrong, I pony up. I manage. Stiff upper lip, voicing the unspeakable and all that. 

Except. 

Except I lose my mind sometimes. I rail against the improbability of the cards life has dealt us, now me. I get angry. I am jealous of people who haven't had their lives upended. I despair. I don't know how to go on with a purpose, with joy. It all seems so meaningless without you.  

Like my clothes, this life doesn't feel like it fits. It was a life that worked wonderfully with you, with Us. But now, I don't know why I stay in this place, this job and this house and this life, without you. It no longer makes sense. Yet, I don't know what to do. 

I don't know what I am supposed to do, Chris.

Maybe you would know me now. Unfortunately, most of my life has been this way, feeling like I don't know what to do. I had no idea what to do when you seized that first time. I didn't know what to do when you had a difficult recovery from the first surgery. I was terrified when you would discuss the tumor returning while it was stable. I froze when you started having partial seizures again and then we found out that the tumor did return. I panicked inside as you faced your inevitable death over many months. I cried out of desperation as you slipped away, silently imploring you to stay.

This has been a long journey of acceptance. I am still working on accepting that you are truly gone. I do still beg you to come back... But, when push comes to shove, I am less reliant on the memory of you and Us to guide my decisions. I ask for help from other people because I am forced to, and I want to. I need so much help, so so so much help. That is ok. No woman is an island, I suppose.

The converse of my question hurts in a different way. 

Would I still know you?

Of course. Of course, of course. You are in my dresser, a heavy box of ashes, frozen in time. Your brain cannot rewire, you cannot change. Your goodness is as true as it always was. 

I don't know how to reconcile my aging and your not being.

Would you know me?

You would if you could. 

You would if you only could.

Please. If there is any way that I don't know about, don't believe in... Please help me. Please help me guide our children. Show us how to feel joy. 

Please help me go on more easily, more gracefully. 

I miss you so.

I don't know what I'm supposed to do.

Portal to the Past

Funny how I can live in the same home that once housed our family of four, hold the same job that I started back before the brain tumor, move in the same body that I always had, and yet not constantly be distracted by the breathtaking fact that it's a totally different life. Truthfully, I'm sometimes flummoxed by the framework looking the same as it always did but the reality being different. Mostly I am able to function well but there are landmines yet, unexpected jolts to be had when one of us encounters a forgotten relic from before.

Tonight, it was when we happened on a notebook that belonged to Chris. We opened it to find some of the last notes he wrote at work from February of 2018.  We stared at it. As I sit to recount it now, I imagine a whooshing sound as we stepped through an unexpected portal to the past.

For there he was in that familiar handwriting - right back in front of our eyes - engaged in science, trying to be a good boss, making plans, and writing medical notes, all with those signature boxes to be checked off. His enthusiasm, earnestness, and intelligence were palpable on the page as we scanned notes about matters that ranged from mundane to monumental.

It was hard to read, yet impossible to stop.

It was unspeakably difficult, but we remembered him aloud.

He was RIGHT THERE.

It all could have happened yesterday...

Whoosh - the portal closed. It was four years ago. Four long years ago, and that is just back to the beginning of the most terrible time. Five years ago to the beginning of the end when the tumor returned. Six years ago to the last normal family time. The gap will only lengthen. I imagine the trips through the portal won't feel like yesterday at some point, or maybe they only do to me right now anyway as I think it is not the same for our children.  

For me, the details of that hard time are exquisitely painful and precious. I look at the pages and am transported to a different state, one in which I temporarily feel like I did with him as a partner. There are no words to describe being put back in that life. Every part of life was so much more back then. Happier and more secure in the warmth of our marriage, even as I was totally unable to do anything to stop his death. I had Chris. He had me. We had our family, we were us. It was everything I ever wanted...

I no longer have the life I wanted. The portal closed. It always does. 

Once locked out from these moments, I see in myself an endless ability to wait. I was always good at the long game and tonight I believe that I would wait literally forever for Chris to come back if he could. He and I were so connected, so entwined at the end dealing with the horror, that I do not want anything else. I could continue to manage this less-than life alone and wait a lifetime for him, it would be an honor.

My trips through the portal are illuminating. I cannot control the memories that rush back when I go through, and he comes to me in ways that remind me of what he wanted for me.

He didn't want me to wait. He wanted me to live and be happy.  

I can't give up my quiet vigilance, not yet. I don't want to live without him and I must go on, so I will continue to wait and do it all again tomorrow without him. For tonight it is enough to see it, to name it, to understand what is going on deep under my conscious mind. I will need to give it up at some point, and recognizing that is a step toward laying it down.

In my longing, I do only what I can tonight. I simply beam out my same messages to Chris. 

I love you.

I miss you desperately.

I am sorry for the ways I failed over the years.

Please help me, please come back. Please. I'm sorry for asking the impossible but I need you. We need you.

Thank you for everything.

Thank you.

Thank you. 

Today is Not Forever

 I am being tested by this pandemic. Still. 20 months on. The vaccine for kids ages 5-11 is literally days away from rollout, but my daughter's school has a sizeable covid-19 outbreak. Boom, email went out Sunday night declaring remote school for the affected grade. Trick-or-treat time for me was spent obsessing over what to do.

I just... Can't keep doing this! What am I supposed to do? There is no help to call on. The "rest" of the culture seems to have moved on and I am expected in person at work. She is not very old, obviously, being ineligible for the current vaccine. I am exhausted from the mental calculus of what is acceptable and least objectionable on multiple fronts. I am burned out from living one day at a time for years now. Years of not being able to look forward to a happy future, a good future, will drag you down.

I miss the days of thinking it through with my partner.

I miss the days of passing the baton back and forth to make it work.

I miss the relief of conversation and shared looks. This is nuts but we will get through it.

This week will be hard, but it will pass. If none of us test positive, it will be but an inconvenience. The way this life goes, next week I won't even remember how stressed I was today in the face of the next challenge.

Today is not forever. That is what I need to remember in these moments of desperation.

Today is NOT forever.

Happy Like That

This past Friday was a gorgeous October day. Everyone was excited to get through classes because fall break lay ahead and the campus emptied quickly in the early afternoon. My office was summer-warm and bright as I graded quizzes in the silence, biding my time before an outdoor meet-up with an acquaintance. We had a nice talk over coffee that stretched over an hour or more. Eventually, I felt the pull of home and my thoughts drifted to worrying about who needed me there and whether I had selfishly stayed in my conversation too long.

The drive home was truly spectacular, the stuff New England is famous for – the sinking sun set off the red-orange-yellow leaves against a perfectly clear sky. In such beauty, it should have been a peaceful drive after a productive and good day. Instead, I felt a nagging despair. It worried me in its bleakness.

 It was more than being sad that Chris was gone, though that is part of it. I did wish I was going home to a long weekend of family fun as it seemed “everyone” else was doing. I longed for lighthearted banter amongst the four of us and later conversation just the two of us. My thought process cycled through remembering what I used to have and what I would face when I got home. A mess. A kitchen I would clean up alone. Paperwork and junk mail piling up. Going to bed in silence.

The long weekend hopeless feeling was like staring into a dark abyss and seeing no bottom, no way out, no path forward.

I will never be happy like I used to be. I will never be happy like that again.

Things went from bad to worse. I woke up Saturday morning in a fog, nearly paralyzed with apathy. Minutes and hours passed, but I accomplished very little as I plodded through mundane chores. Then, I turned that lethargy on myself in a barrage of negative thoughts and self-loathing. Later in the day, the tears started and wouldn’t stop. I was in a dark place, and a very snotty and swollen-faced one at that. Talk about a mess…

I will never be happy again.

As I settled down for sleep later, the aggravating cause of my despair became clear. My eyes and nose were not just irritated and running from crying; some nasty bug was hitting me hard. Feeling physically bad had triggered emotional distress before I even realized I was sick. The moment of relieved recognition that there was a reason for feeling so terrible quickly gave way to a different awful thought: I have a virus.

Oh no, what if it is that virus???

A specific worry gave my brain something to do besides despair. Well past midnight, I researched options and made my plan from my bed. I ordered a package of rapid home covid tests for pickup at my pharmacy in the morning. I could use curbside pickup and answer the question about covid with minimal exposure to other people. I would worry about my unvaccinated child once I found out, and I would figure out how to manage two weeks of isolation if needed.

It wasn’t needed. I had an old-fashioned cold, 2019 style. I’ve never been so happy to have a bad cold!

Did you catch that? I felt happy.

I laughed a little at myself. Obviously, I feel happy at times. It’s impossible to be unhappy when a 60-pound coonhound is trying to climb into your lap and wash your face while frantically wagging her tail. It’s impossible to be unhappy when your ten-year-old makes you picture after picture declaring you to be the Best Mom Ever. It’s impossible to be unhappy when your teen is making leaps forward intellectually, socially, and emotionally.  I do indeed have some happiness in every day. Sometimes I am even overtly happy.

Still, I had not been completely wrong. Chris is gone and he cannot come back, so I will not be happy like that again. The feeling I had when we were together cannot be replicated. It was special, and it is over. It turns my insides quivery with panic again to write that truth and lean into it.

There is peace to be found in the other truth, though. I can be happy again.

It just won’t ever be happy like that again.

 

Orders of Magnitude

 

Tomorrow marks one thousand days since Chris died.

Something about that feels momentous. Quadruple digits, if that’s even a thing people say.

It’s been too long. Too much has happened that he has not seen, heard, or experienced in any way. I don’t look for his car to be in the driveway anymore as I return from work. I have lost the inclination to message him. I do not expect him to be at the dinner table nor to help me or the kids in any practical way.

It is not a month mark, nor the date of another year passing by.

Oh yes, this is yet a different time when I compare to earlier experiences. It is tempting to fit the data to a mathematical model - one thousand days is a milestone marking a length of time described by an entirely new order of magnitude.

Zeroth Order, 10⁰ = 1

The first day is a land of its own, the true epicenter from which all else will eventually ripple outward. Day one is such a shock you don’t quite know what happened. He was alive last night and now he is not. His things were packed up from the hospice house and are in a bag on your bedroom floor. It makes no sense. You make calls, take calls, write a list of calls to eventually place. You go to bed alone and it doesn’t feel quite right, but it definitely doesn’t seem real or permanent.

So the zeroth order plays out incrementally, day by near-endless day. Guests. Calls. Plans. Food. Flowers. People look to you and you must make decisions, immediately. You are propelled with the urge to honor him.

As the order comes to a close, you have little idea about what is in store, though you begin to stare out the window in confusion, take a few walks alone and just barely start to comprehend what “died” means.

First Order, 10¹ = 10

The days are counted in double digits. The service is over. Your home is cleared of medical equipment, prescriptions, papers are filed away.

People go home and back to their lives, but you do not get yours back. He does not come home. The tears that didn’t really come cannot be stopped. The pain is unbelievable.

Days tick on through double digits and you try to keep going, but you don’t know how. You are a stranger in your own home, an alien in the shell of your old life.

The first order is nearly indescribable in its horror.

Second Order, 10² = 100 

In days counted by triple digits, he’s been gone a little while, but it is still so fresh. You have survived a few firsts without him, but now you slog through that first year. It is very, very hard.

The triple digit days feature one season changing into the next, holiday following holiday, one year turning into two. The kids grow and need new shoes, new clothes, then they go to new schools. They are smart and funny, thriving even, but they miss him. There is not enough of you to go around for hugs, games of catch, homework help, and cheering section. Even if you could do it all, they need him anyway. All of you begin to know it in your bones that he is not coming back.

You begin to manage.

In the waning days of this order, people don’t understand. They are surprised by your sadness. They think you should be over it or assume you are back to normal, not comprehending that there was no normal left to return to. You are a different person with a different life, but never asked for that.

Third Order, 10³ = 1000

You make all the decisions alone, and while it is good to feel more comfortable with that, it lacks joy. You see that life stretches ahead and it would be a shame to waste it only looking back. The real work is making something of what is left because he is not coming back. He is simply not coming back.

This order is long, 1000-9999 days. It will encompass more than two decades. You could easily die in this order of magnitude. Or, you might be in your late sixties as it nears the next order.

I worry about this order. If I do that hard work and build a new life for myself, will it ever be as good? And if it were, would I lose him completely?

At the end of this order of magnitude, will I still be able to hear his voice in my head? Will I remember our life together? Will I feel connected to him?

It seems the task of the days ahead is to let go a bit to be able to live more fully. I really don’t want to.

In the end…

Perhaps the mathematical model doesn’t fit. It was a decent experiment, but the R² value was poor. In other words, day 1000 does not have to be a milestone marking an unwelcome phase. The experience of loss is not linear, nor logarithmic. I can look all I want for patterns, analogies, and sense, but the truth is that the thousandth day is just one more day in a long line of days without Chris. My feelings will be up and down, here and there and back again.

I miss him, and that’s okay.

I am trying hard to do new things and meet new people even while I look back longingly.

I can call up his voice in my head and feel his support even as I forge my singular path onward.

I survived 999 days before today. I will do it again today, and then I will wake up and do it again tomorrow.

 

 

 

 

Anniversary Reflections: The Two Sentences Left Out

 July 31, 2021 was a Saturday, just like it was in 2004. Alone, I marked 17 years since I was married. It was a hard day trying to act normal while feeling hurt-angry, like a wounded animal. Although I do not believe that Chris can hear my thoughts or read my words, it occasionally helps to address him directly. Sometimes I simply plead for him to come back or to help me. Other times I have more to say or feel he deserves better from me, like that milestone day which has taken some time to process.

…

If I were a better person, maybe today would have been one of gratitude for the love we shared, for re-reading our vows and looking at pictures with thanks running through my head. I’m not, so I didn’t do those things…

The pictures hurt too much to look at. In fact, I removed our wedding picture from the mantle long ago because it became confusing to see our young, happy faces in the photo while the me in the mirror ages alone, muddles through alone. It was not helpful to my daily life without you to see us smiling from atop the fireplace, so I replaced it with a family picture.

Though I do not have them memorized, I don’t need to read the words we said during our wedding because the essence of them is indelibly imprinted on my mind. We both put our unique spin on the traditional words, and I know we both meant those promises. We lived them fully and deeply, and I am proud of us every day.

Today I couldn’t bring myself to conjure those memories. Instead, I was focused on the two sentences that were left out from the vows. The sentences that we didn’t know on our wedding day, that were handed down soon after with a terrible cruelty.

Yours, of course, was the death sentence. Nobody could see it on our wedding day, but the tumor was probably already there extending its tendrils through your brilliant brain, penning the prologue to your untimely demise. It was later revealed that you would be required to loosen your grip on everything you loved, including me, and die before you were finished.

For some reason that defies logic, or more accurately for no reason at all, I got life. There was no way to know it back then, but mine was a life sentence of living without you.

These sentences were not about delivering justice; rather biology and neuroscience blindly dealt them to us - death for you and life for me (for now).

…

I am not serving out my life sentence gracefully, Chris. I miss you with a ferocity that alarms me. The bottomless pit of sadness scares me more. Quite simply, I struggle. I wish you could help me with this as inane as that sounds.

Often, I wonder what I could have done differently and better throughout our marriage. I go down the rabbit hole of wondering if I was actually good enough for you and whether most people think the better person died. I know that I should have worried less and had more fun in too many moments. As you faced down your death sentence, I should have been less afraid to cross a line and instead asked more questions about what you were feeling, to give you more chances to talk. I am not sure if I “should” have sought your counsel about my life sentence, but I wish I had not avoided discussing it with you. We did talk some, but I held back because I was worried about hurting you with my worries about my future life, which you did not have.

…

As guests have once again come to our house after so many months of isolation, I recently landed in proximity to the marriages of others and glimpsed the periphery of their private worlds. I was reminded how a marriage gives an individual support, lends counsel, provides a respite. A few times this called some of our own magic to mind, but the relief of that ephemeral sense was immediately followed by the punch that the magic is just a memory now. Similarly, I allowed myself to wear my rings for a few hours today. They slid on perfectly and looked simple and beautiful, as they always did. I felt both immensely relieved and like an incredible fraud, so I removed them before anyone else noticed.

You were my counsel, Chris. I always looked to you, relied on you, and you never once disappointed me.

You were my delight. I laughed freely when you were animated. I was proud of your accomplishments and more so of the way you treated people and moved in the world.

You were my comfort. In you, I found true respite - I could draw a deep breath and let it all the way out. When we were together, everything felt okay even when it most certainly was not.

You were my love.

You are not here anymore.

…

It feels like someone dropped a neat spool of thread the day you died and it has been haphazardly rolling away ever since. Now there is so much thread strewn on the floor, bunched up and tangled, that it would be impossible to straighten the length out and wind it neatly to get back that perfect spool of life with you.

Similarly, I have thought about what is left of you, tucked away in my dresser. My brain understands that I could never reconstitute you by adding water to the small box containing your ash and bone bits.

The futility of that imagery forces me to see that it’s impossible to go back.

My heart desperately still wants to.

…

This is my life sentence: I missed you terribly yesterday, I woke up today aching from missing you, and I will miss you just as much tomorrow.

It hurts so much because we loved each other so completely. I think you knew that I loved you then, and I wish you could know that I love you now and will love you until my own time comes. Despite my pain, this is the greatest privilege of my life and I want you to know that.

You served your sentence magnificently, Chris. I will forever be in awe of your bravery, gentleness, and your focus on love as you moved toward the moment of your death.

Thank you for everything.

I love you.

 

Constant Juggling and Missing Him

An ocean churns in my mind, every single day. I come here to document it when I can, because it helps. It is sometimes a good thing when I don't write because I'm in a good place, but sometimes I'm in a bad place and avoid doing helpful things... Time to jot a few things down.

...

 I'm tired tonight. I feel one hundred years old. I wake most mornings thinking of Chris and pondering this less-than life, wondering what the hell happened and what it all means. I struggle with this late pandemic existence, trying to forge meaning or at least beat back apathy when there are still so many limitations and necessary precautions to take.

I miss him. 

How many ways can I say that?

How long will that be the undercurrent of my consciousness? 

What will it mean when I am not crying that I miss him with every cell of my being? Will that ever happen, anyway?

...

I messed up tonight. Nothing major. It just broke my spirit a little. I had shuttled kids around to different locations and was finally relaxing at a game, feeling a bit smug because from my chair I had ordered Thai takeout from a new-to-us place on the route home. As the game dragged on, I realized that I should check the restaurant's hours. Shoot. It was 8:15, top of the 6th with home team still needing to bat, and this place closed at 8:30. Shoot shoot shoot.

I decided to leave the game to pick up the food and come back for the child. I hoped I could make it back for the end of the game, but still I messaged the coach regarding my whereabouts, feeling like an idiot. Of course, the game was called for darkness as I was several minutes away. In the end kiddo only waited a few minutes and survived just fine. The food was not wasted. It was okay. But, I HATE this. I absolutely HATE this life of constant juggling, needing help, being out of control, feeling like a loser. 

...

The worst is feeling guilty for hating this. Chris would be here if he had any choice in the matter. Why can't I have a better attitude? 

It is time to go to bed. He always advised me to do so when I was in such moods. Everything is worse when you're tired. My husband was always wise and full of compassion for me. I will try to channel it now to show myself.