You, Us, I, We

Dear Chris,

The day I've been dreading since you died has arrived - our anniversary. I don't know what to make of still being here without you and marking 15 years since the day we were married, the day we made Us official. It is not our 15th anniversary, I guess. The wording "it would have been my 15th anniversary" comes to mind and I don't like how it sounds, but it is fitting. Our marriage required us both to be here and you're not now, so it's not 15 years old. It definitely would have been if you had lived.

July 31, 2004

Fifteen. One of those multiples of five. Not a huge one that people celebrate but also not just a tiny milestone. We only got one of those flashy anniversaries at 10 years. I know it bothered you and you were sad that we wouldn't see others, like 25 or 50 years. I am sad about that, too. In one of my recent spells of daydreaming, I imagined what you would look and be like as an old man. It broke my heart into a few more pieces. You would have reveled in being a grandfather if our kids have children. You would have cared for me for years if you could. We had what it took to make it work for a long lifetime. I know we did. I'm so sorry you didn't get the chance to see more years.

Another of my daydreams is thinking about what I would do if I could have five more minutes with you now. What would I say to you? I spent a long time thinking about how I would pepper you with questions and say all of those things I always say in my head. I love you. I have missed you. Thank you. I am so sorry. That last one is important because I still cannot forgive myself for not playing your last day differently. When I'm being honest with myself, I know that you always forgave me. You always knew that I meant well if I didn't get something right. In fact there was not one thing I ever said or did that you didn't forgive and move on from. I'm trying to remember that as I continue to grapple with regrets. Our special wedding dance song reminds me that words are not needed. We both knew that. So if I could have those five minutes, I don't think I would say anything but instead just give you the tightest hug I could.

Sometimes I still cannot believe you are actually gone. When I can accept that you are gone in other moments, I am astonished that I am able to breathe and move in this world without you. I love you so much. Basically as far back as I can remember you I have loved you. Even early on when I couldn't name that feeling it was there. Something in me immediately recognized you as home. You were so special. So kind and genuine, so gentle. Fun-loving, funny, happy. I miss you so much, the emptiness left behind from your death is endless. I wish I could make you know that I still love you, maybe more than ever, and I always will. I hope you somehow do feel my love. I feel your love in this house, in our family, in my mind and heart. You were incredible and left me a legacy of your love.

I also miss Us, and that is not quite the same as missing you. Everything that made you so special to me as an individual you poured into nurturing Us, just as I freely gave the best parts of me to Us. Forming an unbreakable, loving partnership was important to both of us, and while the work of building Us was mostly joyful, we both learned about compromise, speaking truth, forgiveness, and sacrifice. We didn't have very long to be a regular Us before the specter of grave illness, just three and a half years of marriage. We were close in those years, best friends. I'm thankful for that time because it laid a strong foundation for what was to come. It is hard to describe what did come in the years following your diagnosis. Yes, there was intense worry, great uncertainty, and deep sadness before the recurrence. We turned toward each other, to Us, to get through. I am aware that some couples cannot survive this type of situation and I'm profoundly thankful that we did. I'm proud of you, and I'm proud of me, and I'm proud of Us. The Us that developed over the years, even the really tough ones at the end, gave us a sense of well-being, of peace, and of refuge. As long as we were together everything felt safe.

Us, 2014

Before you died I would have written that confidently - we felt safe and completely fulfilled in our partnership. Now that you're gone, I worry over my words. Am I being accurate if I use "we" in conversation? Do I really know what you were feeling? Am I deluded about Us and how close we were? Was it all even real? Every now and then when I remember conversations, look at pictures, or listen to recordings we made together, I can tap back into the feeling of being Us. Those moments are a gift but also incredibly sad because I miss Us. It is so painful that Us is gone, it really is more wrenching than I imagined. It took two to make Us, to be able to say We, and now there is just me left behind. Everything was better when I was part of Us. The way of the Us life is gone and cannot be replaced. I have to keep saying it to believe it... 

The enormous loss of Us is exemplified by my language choices. Unless I am talking about the past specifically, I have started saying "I" more than "We" in conversation even though it is incredibly painful. I suppose I said "We do this or that" a million times and it was brain muscle memory to keep doing it, but the longer you are gone, the more that type of comment feels wrong. I hate to admit it, but I am sensitive about what people think of me. If I keep saying "We" do people think I cannot understand the situation, that you're gone? Still, phrases of "I do things this way" feel like acid in my mouth, particularly when I'm thinking about taking care of our house and finances, and especially about parenting our children. It feels horrendously disloyal to say "I" but increasingly uncomfortable to say "We." Please forgive me. I'm feeling this all out the best I can. I want you to know that I speak of you freely, frequently, and with the utmost love and respect. 

Yes, I'm doing the best I can. It is not pretty sometimes. When I talk to you in my head I often cry to you that I don't know what to do without you. It's true, I'm quite lost without you. But, I cannot lose myself completely; I am quite aware of my heightened responsibility now. There is no spare parent, I can't go down. I have no idea what I'm doing and live literally a couple of days at a time, just floating along and putting out fires as I go. I don't have the ability to think and plan much farther ahead than that. It's working for right now but I'm worried about going back to work and school. The routine may actually be a needed shove toward effective functioning, I don't really know, but I'm worried everyone will expect me to be normal. I don't know what normal is anymore.

What I do know is that I have a lot of good people around me. Some of them would not surprise you at all. Our families are the best and you always knew it, good friends, too. What I want to tell you is that I have some new friends, Chris. I can't believe it but I have met and become closer to a lot of people because you died. Actually some of these folks I have not even met in person but have interacted with in the brain cancer and wider widowed community. The world is an amazing place. You helped me see this while you were here, and you help me now that you're gone, too.

Chris, I am not exactly sure what you wanted at the end of your life with respect to our wedding vows. When you spoke to our friend to write a piece with her in December, she thought you wanted to renew them but we didn't get to it. You wanted me to share the vows with our parents and we did do that by email. It all adds up to me knowing that our vows were important to you. Please know that they are important to me, too. As with just about anything, they make me sad to revisit but also deeply grateful when I do. I will make sure the kids see these some day.

When I read what you wrote and spoke for me, I smile now because you absolutely lived by these words:

Betsy, this wedding is a celebration of our love for one another and a commitment to be loving and faithful to each other for the rest of our lives. It’s a continuation of a life together that we’ve already begun. You’ve made me so happy already, and the joy of knowing that we have a lifetime to spend together is truly a gift. I promise to do everything I can to help us grow together as a couple, and also to be there to support and encourage you as you grow as an individual. I promise to love you unconditionally, to be there to listen to you, hug you and hold you when you are happy and when you are sad. I promise to be patient, understanding and forgiving; to listen to you, to discuss things, and to work through any problems we might have. I promise to love and hold you through good times and bad, sickness and health for all the days of our lives. I love you!

You did it. You loved me unconditionally until your last day. You forgave me freely, this I will remember forever. You prioritized Us and showed me grace. You expressed your love in every way you could, understanding it was the most important thing to do. You did so well, Chris. We got more than our share of bad times and sickness for 14.5 years of marriage, but you showed me more than 50 years worth of love. You couldn't have been a better husband.

It's only right to remember my vows, too:

Chris, we’ve come so far to arrive at this day. We became friends. We learned to reach out to each other and to share our lives. We became a team. Along the way, you deeply touched me with your thoughtful heart, kind ways and most of all, with your love. Today we fully join our lives, beginning down a new path together. Along the way, I promise to treasure and nurture our partnership, while honoring our individuality. I will encourage us to grow, to serve others, and to take the higher road both independently and as a couple. I promise to support you and be your friend through achievements, disappointments, joys, and sorrows. In times of decision and disagreement, I promise to listen, to be willing to compromise, and to be open to change. I will be there to celebrate with you, and I will be there to cry with you. I promise to hold you, and I promise to love you in good times and hard, in sickness and in health, for all the days of my life. I love you!

I did it, too. I did celebrate with you and I did cry with you, and I hope you felt my support and friendship. I loved you in the good times and in some devastatingly hard times of sickness. We made it together. I am proud of Us. We had an outstanding, successful marriage. I just wish it had been a lot longer...

As July 31 unfolds, I will be mourning you as a husband and person, and I will be missing Us. It will be a very difficult day. As much as it hurts and feels like pouring salt in a wound, it will be the day to take my wedding band off. It seems right to place it on my family necklace with your wedding band. Those two rings can be together and it will be okay. I am selfishly sad about my engagement ring - we picked it out together and I honestly love it. I know that rings don't reflect how much or even whether someone loves you, that kind of love cannot be shown by any symbol and I am absolutely confident that you loved and love me. I shouldn't "need" to have an engagement ring but I do admit to liking the overt sign that someone chose me. Shallow, I know, but I have had to give up so much, must I give up this ring, too? I've thought about this a lot. I think I will try it on my other hand. If I like that, I might have it resized to fit better so I can continue to enjoy it. I know none of this ring stuff matters, Chris. Nothing can change our love. I do not need reminders to think about you, I always am. The rings are something I have to deal with being the person left in the world of the living. I hope you understand. Actually, I know you would. You always did.

Today I will also try to celebrate you and Us. I plan to go to some of our places. I know it will hurt, but I want to remember some of our special or even just typical times in Cambridge and Boston. I won't find you in the present at any of them but I hope I can remember the fun and love that we shared. I hope I can feel Us again even for a few seconds.

I don't know how to end this. It feels like I'm talking to you and I never want to stop. I love you so much. I miss you terribly. Thank you so much for a wonderful life, for being part of a treasured Us. 

Your wife,

Betsy  

That's Not How It Works

Phoenix rose very early this morning as she often does, demanding her breakfast and time in the yard before much of the neighborhood was awake. But being the good pup she is, she was convinced to take a snooze with me after her needs were met. As I dozed off into a light sleep, strange and vivid dreams passed through my mind. I dreamed of Chris, one of only a few times. In this dream, I felt Chris’s comforting presence strongly but I couldn’t find him. He seemed to be right behind me but I couldn’t see or touch him. I said to him imploringly, “I want you to come back.” The only thing dream-Chris communicated to me was, “That’s not how it works.” It was not a mean comment but it also wasn’t particularly reassuring, it was the truth laid out for me. That was it, that was the end of the dream. I woke with an uneasy, unsatisfied feeling and I’ve been thinking about this dream all day.

I’m a practical person; I don’t believe that people come back to us in dreams. Still, when your special, deceased person is suddenly there in a dream it’s hard to remember that dreams are just electrical activity in neurons, well-worn circuitry activated in a state of semi-consciousness. My mind has been busily working on something lately but during the day the thoughts come too fast and are too interrupted to discern a theme or message. The sleep state relaxed other thoughts and only then could I find clarity.

That’s not how it works.

What a simple sentence, an answer to a lot of swirling questions… Chris in his great wisdom and intentional living showed me this, and my own mind processed his lesson and delivered it to me when I most needed it.

In my journey thus far I have had to beat down a lot of unflattering thoughts and questions. Wanting Chris to come back is something I wish for daily. I know it's not possible, but I cannot help it. This dream message was not unkind, only needed, just as we often helped each other in real life. I’m not proud to admit that there are other questions and thoughts it applies to. I have lamented that Chris developed a brain tumor since he was such a good person, such a smart person who was contributing to society through his job and charitable donations. Why did this happen to us when we did everything right? We followed all of the rules, we lived deliberately, we pursued the best medical care and respected all of its recommendations. We did everything right. Why do our children have to suffer this catastrophic loss when they had a devoted, involved father? It all seems like such a waste of good decisions and safe living.  

That’s not how it works.

It’s a good thing, I guess. It’s easy to say “I’m a good person” and overlook my various flaws and shortcomings, not to mention my great privilege. Wouldn’t everyone say he is a good person? Why do I think I’m so good and more deserving of life than any other? It's a selfish, arrogant attitude to assume I don't deserve hardship but others might. Moreover, even if I was right that Chris and I are good people, doesn’t it make sense that this tragedy befell us because we are/were well-situated to handle it? After all, our privileged yet measured, rule-following living gave us a financially and emotionally secure family life. We both paid close attention to our children throughout this ordeal and they have a comfortable, stable life. Who could navigate this better? Maybe the fate that met us is actually appropriate in lieu of colliding with some other family less well off, with a less sure grounding. We were in a good position to handle something horrific and we got that. That doesn’t sit well… We got it because we could handle it?   

                                                                             

That’s not how it works.

Thank goodness that is not how it works. There is no rhyme nor reason.

Why do I find this comforting? There is nothing I or we could have done to avoid it. Just as the random fortunate happening of biology created the specific, unique person of Chris, an unhappy accident of nature caused the brain tumor and took him away. There was no reason, it just happened. The rain falls on the just and unjust, so there is no point in trying to adjudicate who is the just.

The flip side to this comfort is the following question – given this monumental loss, am I now immune to further calamities? No. That’s not how it works. I could be diagnosed with cancer, an autoimmune disorder, taken out by a car accident tomorrow, or encounter any other of a countless array of problems. Even though I cannot bear to imagine, the same is true for our children. Or, maybe we will escape major misfortune for a while. This part of the randomness is not comforting. Lightning can strike twice even though most people are never struck at all.

What to do? All I can do is live with an appropriate amount of preventative caution and benevolence for the sake of the rightness of being good to others, not because being "good" will result in easy living. Also, I need to appreciate what I do have in the here and now. Easier said than done sometimes, but I am trying…

Whatever I saw or heard in that dream came from me, not Chris. Yet, that doesn’t mean that I cannot learn or take something from this dream and it doesn’t mean there was nothing of Chris in it. I knew him well and my mind called up the essence of Chris. It was him and not him at the same time. I needed some answer for my endless pondering and I got one, even though it was somewhat different than what I hoped for.

I am an eternal student of life, I guess, destined to be continually surprised by my own deficiencies.

Occupying His Absence

After the big emotional effort/expenditure of getting through the Cooperstown trip and Father’s Day, I had a couple of days of general malaise. I was no longer laid out crying all night and looking horrifically hung over from that the next day, but instead I did a lot of nothing. For only the second and third times since adopting Phoenix I did not reach 10,000 steps for the day. I didn’t put much thought into cooking nor eating particularly healthily or exercising for only myself (i.e., more than minimally walking the dog). The word scrounge comes to mind. After yet another poor night of sleep, numbing my brain by watching a Netflix show until I fell asleep and it continued to run on and on, I decided that would be enough of that. I needed to care again about the things I have always cared about and stop being a robot that only delivers children places and collects and cleans dirty clothes and dishes.

So, I did what I often do and went crazy in the other direction. I filled every minute of the next day with activities. It was jammed with a fishing outing, off-leash adventure, manic mopping of all of the floors, grilling a decent dinner of vegetables and meat, running, mowing the lawn, games of catch. Once the kids were in bed, I read my book and then sensibly turned out the light figuring I had to be tired enough to go to sleep without further tricking my mind with more distractions. Sleep did come easily but not for long, 25,000 steps could not prevent waking in a panic from some nebulous bad dream. Unable to remember the details of the dream, my mind started to relive my own real life traumas in the silent darkness of my bedroom.

As I revisited memories of Chris slipping away from me bit by bit and then his final day, I futilely reached across to his side of the bed. The bedding was neatly made up, under it the sheet was cold and flat, his pillow undisturbed. There was Chris’s absence laid out right next to me just as it is every night. How many hundreds of nights had he actually been there in his warm, solid, comforting way? It was a few thousand, actually. What was that even like? I started to fear forgetting him. I turned my mind from those difficult memories and conjured up Chris. His forearm right next to me, fair with little hair and few freckles. His self-described skinny legs ending in feet with the second toes longer than the big toes. Chris’s thick black hair that I routinely cut and which had been shaved three times on the left. It fell out from radiation and grew back two times in eleven years and it turned a little salt-and-pepper in that time. His beautiful smile, though purposefully not wide to cover his teeth. Best of all, his expressive and kind blue eyes. The images of Chris came back easily, but my hand still touched a flat expanse of empty bed when I reached out again.

Oh, my dear one. You are so familiar, yet so far from me. I miss you so much.

In desperate need of making any change to that moment, I rolled over onto Chris’s side of the bed. I buried my face in his pillow and laid my body where he should be. I breathed deeply in, but all I smelled was freshly laundered pillowcase washed many times now since he died. There was no lingering trace of his scent to be inhaled. I explored the space with my body but it was if making a snow angel on the bed. He was not there. I was literally occupying his absence.

I thought about this deeply and realized that so many times lately I have been occupying Chris’s absence. At the grill, paying bills, taking N fishing, watching the kids grow. It is so unfair. He should be here but these kids are stuck with just me. It’s not temporary, either, it’s permanent. As a book I read recently described it, Glitter and Glue by Kelly Corrigan, Chris is not coming back for their best days nor their worst. My despair deepened as I thought about the kids’ loss in a way that I haven’t before. They are so young that, assuming good fortune, their long-term memories are mostly going to be of a family of three. Of course I had thought of their loss, but it was in a more superficial way anticipating their achievements, graduations, weddings without Chris. I had not yet thought about how the adult versions of our children would look back and view the totality of their childhoods. I had not yet thought of their loss in a realistic way, the small ways that will permeate their entire lives. I thought of my own father and how I still rely on him for advice on practical matters. Who will my children call for advice on repairs to their own cars and homes? Who will always be there for them in a quiet and steadfast way? Who will unexpectedly be overcome with emotion at the birth of their children? The answer is disconcerting. Either it is nobody or me alone. I don’t know if I can occupy Chris’s absence adequately for them. Actually, I already know that I cannot be him for them.

I’ve been living minute to minute trying to survive the impact of Chris’s death; I’ve been triaging everything and still waiting, deep down, for Chris to come back. There has not been enough time for me to understand. As the months pile up into years it will become different for the kids and probably for me. Our time being a family of four will become more distant. Time moves only in one direction…

But I want you to come back. I need you to come back. Come ba-ack….

Profound, suffocating sadness descended in that dark bedroom. Once again I had to change the moment. I turned over onto my back landing in the middle of the bed, the place where nobody sleeps when two occupants are present. My head rested flat on the mattress between my pillows and Chris’s, completing the alien sensation. I reached as far as I could to each side with my arms and legs, a starfish desperate to mark the boundaries of confinement. Finding none, only occupying his unending absence, I cried for Chris. He is gone, never to come this way again.

The Coral-Colored Coffee Cup

There’s a travel coffee cup in the kitchen cabinet that catches my eye frequently. The outside is finished with a smooth polymer in a striking coral color and is embossed with a subtle logo. The inside is polished stainless steel and the cup is vacuum-sealed to provide good insulation. It has a black plastic screw-on top with a flip top covering an opening from which to sip. This particular travel cup stands out from the others in the cabinet in quality and appeal, and it holds special meaning because it was given to me by a research student some years back. I really like this cup but I haven’t used it often out of pure laziness since it is one that I do not put in the dishwasher. These days, I see the cup and remember the time when I used it daily.

In March of last year, Chris’s tumor progressed and grew rapidly, displaying the cruelty of the dreaded glioblastoma diagnosis. Over the course of a few days, his seizure activity worsened significantly turning into hour-long episodes of strange partial seizures or altered consciousness. At the same time, his reading/writing skills deteriorated with alarming rapidity. At the beginning of an awful week we were deep in the logistics of a clinical trial using immunotherapy followed by high dose radiation, but on Friday because Chris’s condition had declined so precipitously the plan was immediately abandoned when the nurse practitioner took one look at him. She ordered a dose of dexamethasone for Chris right then and there to treat brain swelling, and called the infusion center to arrange for an Avastin treatment that afternoon. Just an hour after that appointment, Chris was downstairs in the infusion center hooked up to an IV pump sending the drug into his vein.

In fact, Chris was already receiving the infusion by the time I met him in the infusion center, because I had stayed back to speak with the nurse practitioner. It was the first time the medical team needed to deal with me instead of Chris; they saw that he needed a caregiver and they had to make sure I understood the situation and would manage the details. So, they sent him down for treatment and kept me to make arrangements. When I was done with that business, I was walked into Chris’s infusion room by a receptionist. It was one of the few times he had a private room during a treatment. Chris was calmly reclining in a bed and speaking with his nurse. I was extremely relieved to see him looking like himself and wondered if either the steroid or Avastin could already be working. It had been quite a week of being worried about Chris and seeing him be not quite himself during elongated partial seizures. I had been rattled by the sudden change in medical plan and flustered by making hasty calls to arrange care for the kids. Moreover, the significance of Chris receiving Avastin was not lost on me since this treatment is essentially the last resort in the treatment of GBM. Being back with Chris and seeing his serene, kind smile gave me comfort.

When medical situations devolve into this level of urgency, any control of your life disappears. You have to give your trust over completely to the providers as there is little time for questions to fully understand the landscape. Moreover, you are at the mercy of an already packed schedule in the oncologist’s office, the infusion unit, the radiation suite. The radiation piece of treatment was expedited and early the next week Chris had a mapping appointment. Within days of that, less than a week after abandoning the clinical trial, Chris was started on a course of daily radiation. I’m convinced that Dr. S. used a superpower to accelerate the wheels of medicine to help Chris and get him started quickly. If memory serves me correctly, Chris received a list of radiation times a day before he started treatments. The first was on a Thursday in the afternoon, then most of the rest were early in the morning, like 7:45 or 8:00. Possibly earlier. Looking at that list, I didn’t know how we were going to get through. My parents came to the rescue once again – someone had to be able to get the kids off to school so they flew in to provide that stability for the kids.

Once those morning appointments started, we fell into a routine. We woke before six, started the coffee, ran through minimal getting ready tasks, poured the coffee and hit the road just as the sky was beginning to lighten. It was a slog, and we were bone tired. Chris wasn’t able to drive for the last year of his life and so this meant that I piloted us through the traffic to the hospital and back. In better years, Chris would be the driver, confidently maneuvering through knots of traffic. He was never rattled. When it became my job, I was nervous for a long time. Boston traffic is unforgiving, nobody wants to give a driver an extra millisecond if she doesn’t know exactly where she is going. During this radiation period, I knew what to do but it was still stressful. Every day I selected the coral-colored cup to hold my coffee. Something about the bright color and smooth feel in my hand was soothing for my jangled nerves and calming for my buzzing mind. It immediately became part of the radiation routine to use the cup.

I can hold that cup and close my eyes now, more than a year later, and see our pattern clearly:

Get up and out the door while the neighborhood seems to be asleep. Merge onto the Pike, stay in the middle lane until 128, then bear left to keep going toward Boston. Get all the way to the left lane a while before the dreaded Cambridge/Allston exit. The exit traffic will split into two lanes, keep in the right. Take a breath and get all the way to the right to turn on Storrow Drive, cross that lane of drivers trying to merge the other direction. Don’t get off Storrow where it says “To Downtown” but instead follow the signs for 93, go through a short tunnel, then get to the right lane for the Cambridge St exit to MGH. The exit will turn into two lanes, stay in the left of these. Turn left onto Grove Street but watch for pedestrians ignoring the red Don’t Walk light. Drive around by the ER and loop back toward the Yawkey Center, avoid the valet parking lane if possible. Turn down into the Yawkey garage watching for people who are in a hurry. If there aren’t any spots available by the third or fourth floor down, drive in the direction of the exit and there will be spots on the way up and out. Park. It’s plenty early for the appointment.

Take the elevators to the Yawkey lobby. Pick up a bagel and breakfast sandwich at the cafeteria and, if still early, sit at a table for a while. Talk about this bizarre situation, talk about important things, talk about worries, be together. Be together.

Walk up the stairs to the second floor, follow the skyway across to the Lunder building, take the Lunder elevators down to LL3. Head down the hall to the right, then left, to the restrooms. Nobody is ever in there except you. Meet back in the main waiting area. Mentally note the unique décor of the radiation suite, airy leaves or maybe they’re birds suspended from the ceiling. Go back to the patient waiting area and try not to think about how sick people look, don’t imagine how long the patients have left to live. Don’t wonder how long Chris has left, the answer would be shocking if knowable.

Then, our paths diverge. Chris is called back and he walks alone toward a member of the treatment staff to endure what he must in order to have a little more time. He never complains, he is always polite and pleasant to staff. He has to do this alone, I cannot do it for him. I am relegated to my individual path on which I numbly wait. Do not look around, give others their privacy. Block out the optimistic “beat it” messages dangling on a wire hope tree. Don’t think too hard about the benevolent atrocities being carried out on Chris’s brain for the gain of maybe a few months. Try to quell the panic rising in your chest by sipping from the coral-colored coffee mug.

He returns from the treatment room, with a small smile or nod and we are reunited. Without saying much, we leave, our paths entwine again like vines. Retrace our steps through restrooms, elevators, and walkways, go back to the car, swipe the laminated patient parking pass. The return trip is a breeze, just a little over half an hour in the light reverse commuting traffic. Chris may doze next to me during the ride because there is no choice, he is tired. Return home. The children are already off to their schools and my parents leave us to nap. We fall onto our bed and sleep deeply for an hour or more, sometimes I snuggle into his side and hold his arm. It is the sleep of the exhausted and desperate, but it is also peaceful. We are together. It is more precious than anything.

Now as I hold that coral-colored cup in my hands and trace the embossed trademark symbol with my thumb, that intense and now treasured period of time in which we made our daily treks to the hospital feels so close it could be the present. Chris feels near such that he could be just down the hall. But, he’s not. He is gone. That time has passed, the written tense should be the past tense, not the present, nor should it use an active voice. Chris is nowhere to be found now – thankfully he is not at the hospital and he is no longer suffering losses, but he is not down the hall in our bed, his dear profile is not next to me in the car, he is not dictating messages in the rocking chair, he is not joking at the dinner table, he is not lovingly putting our children to bed, we cannot be together.

Chris is nowhere to be found except in my mind. All that is left are memories, but thank goodness for those. I’ll continue to use the coral coffee cup from time to time and remember Chris deeply. Even in the hardest times he was a magnificent being. I loved him then, and I love him now.

For Chris

I am sitting on a bench at a youth baseball paradise near Cooperstown. Our child is happily off with his friends trading pins and exploring this camp where he will spend a few days. You were excited for him and rightly so, it’s a dream come true if you like this sort of thing, which he does. He doesn’t need me so here I am, waiting around for the next event, alone and missing you so much. If we’d split this thing up and you’d stayed home with J, I would be texting you now. More likely you would be here and I’d be home with J, or we’d trade off. I’ve half a mind to find your name in my contacts and text you anyway but the undeliverable bounce back message would be too hurtful. I’ll do this instead.

It’s these situations out with other people, friends or strangers, where I’m forced to confront our situation and I feel close to panicked. This one is a humdinger and I’ve been dreading it for months. I should have been more positive or tried harder, but it meets everything I was afraid of. Being alone in a crowd of happy families.

I don’t usually feel so unglued at home, and I see that perhaps I’ve been hiding there. I can’t hide forever. Life is for the living. You wanted us to keep going and make it a good life.

Yes, life is for the living and memories are for the mourning. And what is for the dead? On this bench I’ve been pondering that. Nobody will know until it’s her turn. Peace and love, I hope, in whatever forms they take.

You were worried about disappearing... I understand. It must have been terrifying to face that. Now that it’s happened, I wonder how it was for you and how you are now, if you’re ok and if you know how much we love you. Where are you? It’s nonsensical to think in this way because neither of us believed there was any real existence in which to feel or be in the human way in the “after.” Yet, my human mind cannot yet grasp you just not being anymore. I’m grappling hard with you never coming back and just being nowhere. I miss you. I don’t understand why this happened to us. There is no why to be found but that’s not satisfactory either.

“Get busy living or get busy dying.” From your favorite movie, Shawshank Redemption. You did that so well. You lived until you couldn’t. Now I have to do it without you, and do more than sleepwalk or tread water through my days. I will try. But today I just miss you so much I can’t do much more than cry for you.

Today on Father’s Day I need to tell you that you were and still are the best dad for our kids. They know you and remember you, and we will continue talking about you and remembering you forever. We love you and we miss you.

Thoughts at 5 Months Out

I open this website frequently and write a bit, then close it with work unfinished. Snuggling the pup always seems more attractive and/or someone needs something from me. I had written something a few days ago and then a bunch of stuff happened (e.g., engorged tick on a kid, many baseball practices and games). Now I don't feel like polishing it because I'm not quite in the same place this week... More on that soon. Or not. Father's Day looms ahead. It won't be easy. Here's what I had been working on. Might as well document that part of my journey.

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Here it is, the calendar is parked on another 8th, marking the fifth month without Chris. It feels like forever and just a blink at the same time. Two very different feelings right at the same time. It's a theme lately. One of my new widowed parent friends called it duality. Yes. I couldn't find that word myself but it's perfect. This new life is one of dualism.

It still doesn't seem possible that Chris is gone and yet I have to function every day in the reality that he is gone. When my mind goes over his last days, I still feel shock at the horror. But, I'm learning that it does no good to sit for prolonged periods in that space even if I cannot help landing in it from time to time. That time was part of my story and Chris's, and it deserves processing, but it cannot become the most important part. It will take time.

I have been allowing myself time with all of this. I'd love to take credit for making a good life decision about that, but it's less of a decision and more that it seems to be demanded of me by an unseen force. What happened was seismic and cannot be downplayed or gotten over quickly. This approach seems to be doing something. In re-reading some of the entries I wrote in the winter, I see and remember that felt like I might never feel any better or differently. I was stuck in my own personal February of grieving. Now, I'm in a somewhat different space but I can't quite name it or make it into an analogy yet. Even though there are still wild ups and downs, the average state is just a bit different and lighter. Some of that probably comes from being plain old busy with personal things - two kids in sports season, dentist appointments, a puppy, and a lawn that refuses to stop growing. Possibly I'm getting some relief from all of the therapeutic strategies I've deployed. Or maybe it's just the age-old saying that time helps to heal wounds, and time is passing.

Like the lush green explosion of near-summer, there are a number of good things happening for us right now. It's almost funny to write that given my kids' dad and my partner died. But still, there are. Quite a number of them!

The kids are both deep into baseball seasons. Julia is learning quickly and improving dramatically in her first season. She pitched two full innings last night! I'm so proud of her, she is the only second grade girl playing. There are two other older girls in the league and they are on her team, and these girls have been great for Julia. The boys have been inclusive and the coaches extremely encouraging, and it's been a really nice overall experience for her. Julia has made several defensive outs in the field and racked up several solid hits. She's having fun and wants to play again next year! I've thoroughly enjoyed helping with the team. There are some funny moments that you just can't make up. "Hey shortstop - you need a glove!" Some of the kids give the most charming smiles when they swing at pitches over their heads. The coaches and I sometimes can't help but laugh. It's done some deep good for me to be a part of it. I'm also so sad that Chris has not seen Julia play baseball. He wanted so much for her to feel empowered, and she does! The girl can be fierce on the mound and fearless at the plate. She's also sensitive and feels bad when she doesn't make a play or pitch. He would be right there drying the tears and giving the fist bumps.

Nathan continues to enjoy baseball as he has for years now. His team was in a playoff game tonight and he went in to pitch in the 3rd inning when they were losing 1-7. He pitched four scoreless innings and contributed to a rally that led the team to a W. Very exciting! He was extremely pleased to be on the mound for the win. In addition to his own team, he has gotten a kick out of helping with Julia's team, throwing batting practice and helping umpire in the field. The boys on her team find him fun and funny. He is indeed both fun and funny. Very soon Nathan will be going with a group of teammates to a tournament/camp near Cooperstown. It's supposed to be a memorable trip and Chris had been very excited for Nathan that he'd been invited to go. Right afterwards it'll be off to the district summer tournament. Nathan is looking forward to it all.

The mail today came with something I have been anticipating for several months - a letter from the president of the College. I was scared to open it... I had applied for promotion in rank to full professor. It was a ton of work, very much akin to a tenure review, and the process took months. I had to decide in the summer of 2018 whether to do it or not, and Chris was doing pretty well then so I went for it. Once things started to deteriorate for Chris, I felt badly pursuing the promotion but he would not hear of me dropping it. I tried to get everything done early and without my usual obsessing over every word. My classes were observed in late November, the last person attended class on the day that Chris went to the ER... I delivered the requisite giant box of materials to the provost's office on December 17th. Then, it was several months of silence as the case went through the system and process while my world fell apart. When the long awaited letter arrived, I didn't open it immediately. I wasn't sure how I would feel with either outcome. But, open it I did and the news was good. It felt amazing to have this behind me! There was a lot of sweat and tears that went into the years that led up to this promotion. I also felt very sad to not be able to share it with the one person who understood the ups and downs of my career and who believed in me through them all. Chris would have been thrilled for me and proud. He also would have insisted on margaritas and a staged picture to make mine look enormous. It was a running joke, now cut short.

Nothing is ever simple now. My recent happiness is of a sad variety, and my sadness can come with a side of lightness. Two or more feelings at once.

It is a good life, but I miss him so much.

It is a good life, and I miss him so much.

Building Self-Confidence

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

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

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

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


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

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

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

before

after

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

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

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

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

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