A lot can happen in a single day. Or nothing can. Many days are forgettable. Many we just try to pass as quickly as possible to get to the next. But some are big, and they stick with you for years to come.
The amount of time I’ve spent thinking about the days that Sam was dying and a couple of the days leading up to it, are those all-consuming, memorable days. Those collections of a few dozen hours changed who I am as a person, and how I see the world. Not a day has gone by since they happened that I haven't thought back to them. Not many of our days are like that.
At first they were so painful to remember. They physically hurt. I’d instantly cry if something reminded me of those days. But now, I’ve thought about them so much, I can sit with them and just honor what they were and what they mean to me. Knowing how big they were, I took the time to write down what happened the days Sam was preparing to leave this earth, in detail. I never thought I’d be able to share them, or even read them again, but time heals, and now I’m ready.
I’ve decided to share this for a few reasons.
If you found this because your person is dying and you’re searching for answers: I don’t know how close or far this will be from what you will experience. But I want you to know that it’s possible for someone to die cloaked in love, and when you look back, you’ll feel good about that at least. I want you to know that though it is miserable, there will be beauty to be found in those hours, too. It will take time for you to find the beauty. It will take time for you to breathe right again, for your emptiness to start to fill. But if you look for that beauty and allow it to enter, eventually it’ll be there.
Everything that follows was written on May 12 and finished on June 4, 2017 except any annotations, which are in italics.
The day you died was utterly horrifying and also somehow one of the most intensely beautiful days that I have ever experienced. I’m scared to write it down and scared not to - that the details in my memory will slip away. I can’t let anything having to do with you slip away.
(Written on June 4, 2017 - so the details are already getting hazy)
2 days before: Sunday you weren’t feeling well but your days had been up and down and I assumed it was a down day. We’d talked about seeing Sam Snyder and having it be a day to spend together and see friends, so your parents weren’t planning to come down from Eagle River. You were really, really sleepy in the morning but we did our normal routine to get you dressed. Then I discovered that the gash on your leg had been bleeding all night, so I re-did the dressing on your leg. I can’t remember many details, except that I wound up making plans to go for a run with Emily and the dogs while Sam came over to hang out with you. When I got back, he said you basically slept the whole time instead of talking like you usually would. He and I were sad and worried about that - but again, I assumed it was a down day and you’d be back up soon. However, after I got home I noticed you had a bloody nose and were bleeding from your gums, in addition to being SO sleepy and out of it. I knew it had been 3 days since you’d had platelets (a transfusion of blood-clotting cells) and I didn’t want you to bleed and bleed all night, so I told your parents that I was going to take you to the ER and that they should meet us there. We all knew things were getting serious when we met there. You were so out of it. They waited with us while the nurses worked to get you platelets - of course it took forever. The ER doctor found additional signs of kidney failure and had some tough conversations with you about your life expectations, and you were mostly too out of it to participate. It was terrifying and sad. That’s most of what I remember now.
Day of: On Tuesday morning I woke up at a little after 5 a.m. in our bed. Alaska May sunshine poured into our windows. Ezra sent me the beautiful and heart wrenching video to the song "Rise Up" by Andra Day, which I laid in bed watching and the tune fittingly remained in my head the rest of the day.
You were sleeping in the hospital bed next to me in our room. You’d been crying out (it sounded like yelping or moaning) every now and then in your sleep over the past few days and I noticed it had picked up in rate. It was concerning, but I assumed you were sleeping soundly and it’d calm down once you woke. In attempts to calm you down, I got out of bed, grabbed a your Harrison book, and Good Poems, and started reading to you aloud. Through tears, I also read you from my, “One Line a Day” diary book about our last 5 years together, and also a couple emails and letters that had come in from people wanting you to know how much they love you.
Your moaning intensified over the next couple of hours and I started to worry more than my standard-issue worry level (which, since the weekend, was already at like an 8). I called the on-call hospice nurse to come over and check you out. As you know, I cherish our alone time so much that I tried to soak up the final moments of the two of us in our room before what I knew would be an intense day ahead with lots of people around, but had no idea they would be our last minutes alone in our house together.
Shaina came over to drop off breakfast for me. I met her in the front yard as she parked so I could talk to her before she came in and heard your moaning. It was a beautiful, sunny spring day in Anchorage. Everything was starting to become green. She was surprised when I asked if she wanted to come in and say goodbye to you, and we began crying. While she was there in our bedroom sitting with you, the nurse came to check on you and called the doctor because you seemed to be in pain. Though you were making terrible noises, the nurse said since your face wasn’t grimacing she thought you were probably OK or experiencing delirium, which is normal. Still, she increased your continuous pain med dose just in case. After she left, I started to worry about you more. You just didn’t sound good and the nurse didn’t have a satisfactory fix. I texted your parents, “we were feeling lonely” and asked them to come down from Eagle River even though it was early.
I knew it’d be hard for them to see you like you were as they arrived, having gotten significantly worse since they’d left last night. I was nervous. When they arrived, I gave them a few minutes to be alone with you and sat on our couch in the living room to replay the day before in my head, wondering how we got here.
Day before: Monday morning you were in rough shape - so tired and beat-down after spending most of the night before in the ER, but still semi-coherent. We took a wheelchair-accessible cab to the clinic as usual, and I cried at how poorly you were doing as I wheeled you in. The nurse could tell you were in rough shape (both you and I were, actually. I’m sure she saw I’d been crying) so she called Dr. Anderson to come down to see you while you got platelets. When Dr. Anderson arrived, she again set to work trying to convince you that hospice would be a good option for you, noticing how much pain we were clearly causing you by transferring you from your recliner to the wheelchair, to cab, to clinic, etc. She explained the benefits of hospice again. You were so sleepy and out of it - this conversation happened very slowly and through asking you multiple times since you kept falling asleep. You asked her if she thought it was possible you’d get better. She said that it was unlikely. You asked her if you could be removed from hospice if your kidneys improved and she said yes, and explained the symptoms to look for if that were to happen. You still resisted. She asked you why you were so resistant to hospice, and you said you, “didn’t want to feel like you were giving up.” We told you that was crazy - that you’d done everything and more and surpassed everyone’s expectations. You were perfect at dealing with a vicious, unrelenting, and unfair disease.
You clearly wanted not to be in pain any longer, and Dr. Anderson said hospice would be the best to help with that, though it could come at a cost of you being more loopy and tired. She and I reiterated this trade-off to you a number of times as you were so sleepy and faded in and out of the conversation. We wanted to make sure you understood that sadly, your comfort would come at the cost of your mental presence. It seemed to her and I after asking you a few times that you understood, and no longer wanted to be in pain. We agreed to set up an informational consult with hospice and likely move forward with it, understanding that if you did improve, you could always jump back into treatment. This made both you and I feel better.
You were largely unresponsive as we were on our way out of the clinic and as we waited for the cab. I cried mostly. Though I was scared and slightly dubious of your wishes at the time since you were so sleepy during our conversation, hospice thankfully called while we were in the cab home and was quick to set up an appointment - saying they wanted to come the same day.
When we got back to the house Monday afternoon your parents came and we were very worried. You were so much more out of it than any of the days prior - barely talking, clearly in pain, and simply looking sad and tired. The nurses came and assessed you and increased your pain meds dose. You struggled to respond to their simple questions. You ate only one bite of mashed potatoes that day. I left to go workout, and your parents stayed with you. We obviously had no idea how little time you had left. After I returned, you were completely out for the evening.
Late that night, your parents left for Eagle River and I was nervous but happy to get to spend the night alone with you, like “normal.” (Very not normal.) Before bed, I realized that your external catheter had come completely off and you were sitting in a puddle of urine. I started our normal routine of helping you stand to remove your pants and Depends, and put on a new catheter before bed. I knew you seemed way too weak to walk with your walker so I put your wheelchair next to your recliner and thought I’d help you stand, shift you, and then you’d sit in the wheelchair and I could wheel you into the hospital bed in our room since the recliner chair was wet. Quickly, it was clear that you wouldn’t be able to stand, even with my help basically lifting you. Knowing you couldn’t sleep with soaking pants on a wet chair, and panicked about how fast you were declining, I called the on-call nurse, Nina (pronounced Nye-na) to come over.
As we waited for her to arrive, something amazing happened. I’d been talking to you all day (many of us had), but as I was explaining to you that I’d called the nurse to help me, you came-to and were present. Like you were finally mentally completely there. Remember that? For the first time all day you looked me in the eyes. You asked me if your parents came yet to help get you to clinic. Kneeling before you in your chair holding your hands, I explained to you that we’d already gone to the clinic today, and they’d left for the night. I asked you if you remembered the day. You said no. Panicked and now crying, I told you we’d put you on hospice today and that you’d chosen the comfort of pain meds over being “with it,” and none of us blamed you. I told you that if you got better, you could always stop hospice because I thought you’d be mad if you didn’t remember your involvement in making that decision since I know you were so agonized about it. Then finally, I told you I loved you so much and cried and hugged you. You said I love you back for the last time then, I think, as you faded back out.
Nina arrived and we moved you from the recliner chair in the livingroom to the bed in our room. It was not an easy task. You were semi ‘with it’ in that you’d respond to the pain, but little else. One of the final things you said aloud in reaction to any sort of stimulus was, “owie-owie-owie” (really fast and mumbly) as we moved you from the recliner to the wheelchair, and then the chair to the bed and then shifted you into place. It was so awful, but quick. We hated making you uncomfortable, but agreed the short term pain would be worth the long term comfort of the bed. In the end, I’m glad we moved you when we did. You calmed down right away once you were settled in bed. I have a heartbreaking voice memo saved on my phone of myself telling you I love you and you trying to respond. Maybe it was from then once you were in bed but exhausted from moving, or maybe it was from earlier in the recliner. I can’t remember.
Either way, Nina pulled me aside after you were settled in bed and gave me a hug and said you wouldn’t have long, and that I had very hard days ahead. Her words were gentle but the truth she spoke was harsh and terrifying. I’m so glad she came over and we started hospice when we did. And I’m so glad we spent our last night at home together in our room - just the two of us and Birkie. I tossed and turned for hours, but eventually we both slept - with some waking up when my alarm went off throughout the night like usual as you became uncomfortable so I could push your IV fentanyl pain pump button to help ease your pain.
Day of: As I sat there on the couch Tuesday morning replying the day before while your parents were in our room with you, it started making more sense why we were here now. I could hear your moaning intensify in the other room and went in to be with you with them and you, thinking it was “new normal.” Friends had texted wanting to see you. I thought it was a bad time for them to see you due to the moaning, but if things were already this intense, I knew it’d only get worse. So, I reluctantly called them and told them to come soon.
Over the next few hours, heartbreakingly your condition continued to intensify. You seemed so agitated and uncomfortable. In between friend visits (Laura, Sam, and Brandon), your Mom, Dad and I took turns sitting with you together and alone. Listening to music, reading, telling stories, holding your hands, trying to calm you down, and, most importantly, telling you we loved you over and over and over again. Finally your breathing got so bad - you were gurgling and it sounded very strained - we called the nurse over to the house again to give you oxygen since it sounded like you couldn’t breathe, and more pain drugs. I wish she would have arrived faster. As she finally administered them in the early afternoon (around 1 or so), your discomfort was at its peak - I thought you might go right then and there. That was right when Ryan came over. He said goodbye to you and took Birkie for a walk. He brought her back in right when we were all in our room - your parents, the nurse Becky and I - and you were practically shouting in pain (were you? I hope it wasn’t pain, but it sounded like it) and your breathing was so labored and gurgly. I was standing over you, crying, and telling you it was ok to let go and we were all here and we understood. I told you that you didn’t need to fight any more. I told you that we weren’t mad and didn’t blame you. I told you that you did everything and more you could have. And of course, I continued to tell you that I love you a hundred more times, as did your Mom and Dad. You seemed to relax slightly right away after I said so. And then, as the meds set in, thankfully you relaxed a lot.
Your breathing eventually became deep and quieter, but still audible. Your facial expression relaxed. Your head was resting on your Mom’s woobie on the right side of the hospital bed. The sun shined in the windows - it was such peaceful weather. Finally, after the long, dramatic morning, each breath you took was like a heaving, audible sigh - but a very comfortable, comforting one. I soaked in that sighing sound you made - it was such a relief after the commotion of the morning. The smell of your breath mixed with the orange-smelling meds they gave you lingered in my nose for 24 hours after from having my face so close to yours all day. It wasn’t pleasant, but I’m so sad that smell is gone now.
For the rest of the afternoon we held your hand as you settled into new, “new normal” - your heaving sighs, much calmer and more comfortable. I cried more and touched your arms and face constantly. Birkie approached the bed over and over to look at you, rest her head by your right arm, lick your fingers and then come to my side of the bed (near your head) and put her head on my lap. A social worker came and your mom and I ignored her, not wanting to step away from you for a moment. We were watching your breaths like a campfire and could barely look away. Since we’d given you permission to go, I knew you were probably thinking about it. I didn’t want to eat or drink anything to avoid having to go to the bathroom and miss a single extra moment with you. I was annoyed when later I had to go talk to the nurse to learn about the meds she’d prepared for you for overnight (which of course we didn’t end up needing).
A little after 5, some friends came to drop off dinner. I knew it was a really intense time for them to see you at this point and was hesitant for them to come into the room, but since I thought it was “new normal,” I had them come sit and talk to you for a few minutes. They told you about their adventures and how they thought of you during each one. They’d brought food, but I didn’t want to leave you to go eat it and had chugged a glass of water when I learned about the meds with the nurse.
I continued sitting with you. Your mom was there too. I sang along quietly to a few songs from our fireside playlist to you. You’d settled into a breathing rhythm and I still had a pounding dehydration headache, so I stepped away to get a bowl of the food they'd left and chug more water. I knew it’s what you’d want me to do - take care of myself. As I sat on the couch to eat, your mom, who was in the room with you as I’m sure you know, called for me. I ran into the room. She said you’d stopped breathing. I sat down in the chair next to your head just as I saw you take one breath, then a long pause. Then one more breath, then nothing. I began crying so hard. I had my hand over your heart but couldn’t tell if it’d stopped beating because I was shaking. It had. Your Dad checked your pulse and said that was it. I looked at him and said “are you sure?” through tears. He checked again, and he was sure. I cried harder than I have ever. Your skin felt the same but your head already fell so limp and dense, and you were so, so quiet. I couldn’t stop crying and yet the quiet was comforting in that it was finally an apparent absence of pain. Well, absent for you, but so overwhelmingly present for me and I’m sure your Mom and Dad but I couldn’t look at them yet.
I got a text right then from Eric: “On my way over to see my main man Sam.” I had your Dad call him because I couldn’t.
Your Dad called the nurse back over to come pronounce you, as she’d instructed us to do. Your Mom and I obsessively held your hands and cried. He made other calls to your sisters, my Mom and others, I imagine. At one point your Mom left me there alone with you sit on the bed with you and lay my head on your shoulders like we used to. I sobbed. Your skin stayed the same texture - it was such a comfort to me, and I couldn’t stop touching your arms and face even as you grew colder. Your Mom returned, as did your Dad, to sit together with you. We talked about the day and more importantly about you. I took your wedding ring off and put it on my finger. As I did, your Dad told me it was your “most prized possession.” I said, “it’s mine now.” It really is.
I texted Shaina to ask if I could sleep at their house tonight. She called me.
“What’s going on?” she asked.
“Sam died,” I said. She said they’d come get me.
We stayed with you for an hour, stepping out only as Nina prepared your body for the funeral home to come get you. I called my Dad who didn’t answer, and then I called and talked to Scott. Just after I did while your Dad called the funeral home, I learned your “official” time of death is 18:54 - though she came after you died, obviously. It feels good that those few minutes before 18:54 are just ours.
We came back in the room after she left while waiting for the funeral home people to come. Your Mom, Dad and I cried and talked more about your beautiful life and our beautiful love. Nina had straightened out your body and fixed the blankets. She laid you to look very peaceful and folded your hands over the blankets nicely. I held onto your hands and touched your head and kissed your head and hands so many times. Your Mom and I talked about your long eyelashes and handsome eyes. I noticed the teeniest of wrinkles on your face that were caused mostly by laughing and standing on the river on sunny days, and probably a little bit by crying. I traced the freckles on your arm with my fingertips like I did when we were laying in bed and I'd try to get you to tell me more stories because I couldn’t sleep. I tried to soak up every ounce of heat you had left and not miss any of it.
I hated the funeral home people when they came. They were nice, but I hated them. I sat on the edge of our bed looking at the hospital bed where you laid in the room as they entered. They transferred you onto a long, black board from the hospital bed, and carefully wrapped you up in a white sheet. They carried you to the front entrance of our apartment on the board and placed it on a cart. They placed your body in a black bag, zipped it, and then covered the bag in a colorful quilt. I remember the moment they covered your face with a white sheet knowing it was the last time I’d get to look at your face. It was so terrible. My body shook.
We all went outside to the front step - your Mom, Dad, Birkie, and I - as they wheeled you down the ramps Andy built away from the house to the street. They loaded you into a black minivan, and drove you down Kinnikinnik and away from us forever. Your Mom blew you a kiss as she always does when we pulled out of the driveway for an adventure. The three of us stood there looking at the street, stunned, for a few moments silently. I’ll never forget those few moments standing there with Debi and Jim and feeling this awful, yet beautiful bond over our love for you, each other, and in awe about what we’d just experienced together. Then we hugged each other out on the step and went back inside.
Ryan, Shaina, Emily and Zac came to get me just a couple minutes after the funeral home people drove away. I saw them out our bedroom window all getting out of the car, uncharacteristically quiet and sighing about how intense of a place they were about to walk into. Everyone hugged everyone when they came in. They laughed at me when I asked if Birkie could come, because of course she could. I was so broken and they were so good at taking care of me as I cried throughout the night a little, and mostly sat numb in the corner of Ryan and Shaina’s couch. Your parents left for Eagle River. I couldn’t sleep. And I couldn’t stop thinking about you laying in that bed over the day - first so agitated and then so peacefully and then so quietly.
Wednesday: Zac made breakfast and some friends came over for hugs (Sam and Liz, and Laura). Shaina drove me to the funeral home so your parents and I could make plans. Signing the consent for your cremation was one of the hardest things I’ve done, Sammy. Other than that, the meeting went as well as it could have. After that, your parents and I went back to our house where everyone was helping clean out all your sad hospital stuff so the next time I get up the courage to enter, it’s more like our old happy life and less like our sad life of recent times. I think that’s what you’d have wanted for me. There were so many people at our house and they were all helping and crying. I gave hugs and thanked them. I hadn’t realized when I asked them to help earlier, how hard that would be on them to have to do that - how sad all that stuff must have been. Then I started panicking about being there too soon, so I left with your parents right away. We ate a nice lunch together. It was another beautiful, sunny day in Anchorage. Then we had good afternoon heading up to Glen Alps and telling stories and enjoying the sunny day as much as we could, exactly as you’d have done. It was again, awful and beautiful. In the car I couldn’t help but think, “un-fucking-believable” again and again. Even though it is believable after all the health drama you’d had, but unbelievable that you are actually physically gone. The drama of the day before was still so fresh - I missed you already, and had PTSD about the events associated with losing you. (Though I hate that term, because you’re only partially “lost”)
That night while unable to sleep around 4 a.m., I replayed a conversation with the funeral home people earlier in the day as they said they used to live right by us. I realized they lived in that brown house on the corner just past the dead end, kiddie corner from Birkie’s “poop lawn.” I realized that that black van they took you away in was one we’d walked past together dozens of times on our walks. I realized that you’d seen that black van. I wondered if that was creepy, or just a coincidence, or comforting, and settled on none of those things, but just interesting.
I know you’d want us not to be sad for too long and to celebrate your amazing life (though, you’d state it more humbly) and remember good times. I’m going to and I will, and want to, but right now I can’t stop replaying this beautiful and terrible few days in my head. It was so much beauty, and so painful. I had white salt crystals encrusted in my eyelashes from the tears - did you know that was possible? I didn’t. Today was Friday. I didn’t cry as much today but I didn’t think of you any less, which is constantly. My body and soul feel so drained and empty, but we’re all keeping going. We are working on your celebration of life so I’m staying busy with those plans. They just called me to say that your ashes are complete and ready to be picked up. Thinking of you as ashes sends me into a tizzy, so I decided to deal with that on Monday. I know you are elsewhere and I talked about looking forward to finding you in the outdoor places you love, and I am going to search constantly for you there. But I was fond of your body and your warmth and your physical self near me and with me and talking to me so much that your ashes are so painful to think about.
Maybe I cried less today because it’s easy enough to convince myself that you might just be at home waiting for me. It’s only been a few days - it could be feasible that we wouldn’t have talked for 72 hours (though I can’t think of a time we did). Maybe I cried less because I was doing logistics stuff and being distracted by baby Cohen, which is all OK but not OK at the same time. I don’t know why I didn’t cry as much today but I know you’d tell me not to over analyze that. Still, I miss you so much it literally hurts my insides and I regret saying that in the past, because it was never true until now.
The past week was so hectic with family in town but the highlight was that our families and our community took care of me and each other. They wrapped me in a support blanket so greatly that saying ‘a support blanket’ is barely even a metaphor. I felt love from 25 different directions at any given moment. I hope other members of your family felt the same. We drank beers and told stories all week. When in a small crowd and the stories about you ended and conversation shifted, I’d be standing there physically but mentally alone still thinking of you, again. I laughed and cried along with your best friends about missing you and loving you. We talked about fishing, and your big ears, and work, adventures we’ve done together, and how you’re really quite slow, and what we’ve learned from you and so many other things we loved doing with you.
By Saturday, I got so homesick that I re-entered our home for the first time with Birkie not because I “felt ready” but because I just knew had to. It was hard but the familiarity was good and I'm glad I went without any other humans. On Sunday, my mom, sister, Cohen, Paula, Keith, your Dad and I celebrated mothers’ day with your Mom and we told her how loved she is and how much you loved her even though I know she knows that. I told her that so many of your most favorite stories had her in them. I told your family that they couldn’t get rid of me. It was such a hard week but I’m happy to tell you that we did what you’d have wanted us to do and we made the very best of it and will continue to.
I could keep writing to you forever. I likely will. Now it’s time for bed. I wonder where you are and if you have to sleep there. If not, come visit any of us while we do, ok?
Love you forever.