I tend to write on each New Year’s Day about either the previous year or my hopes for the upcoming one. But I just couldn’t do it this year. I wasn’t ready to look back at 2025, a year when I went to more protests then I have over my entire lifetime, nor did I want to look ahead to a year that I expect to be filled with more protests of our tyrannical government, along with the stress and grief from watching my husband’s health deteriorate and wonder if this is our last year we have with him.
It’s no secret that my little family talks very openly about death and dying. It’s taken us a while to get there and we’re not always honest with each other or ourselves, but we’re trying. We’re trying to be real about what my husband’s future looks like, but also what lies ahead for my son and I.
It’s odd to have a conversation with your child, no matter what their age, about what they want of their father’s after he’s dead. The other day, my husband, Walter, was in his office, while our son and I were chatting in the living room. I don’t remember exactly how the topic came up, but we started to talk about Wal’s health and I said something about spending time with Wal because who knew how much time he had left. My son said, “I think this is the year.” I looked at him and softly said, “I think so, too.” My boy replied with, “After he dies, dibs on his fuzzy hoodie.” We nearly argued about that because we both love it and it’s become my husband’s signature look, with the hood pulled up onto his bald head and he looks a little like Obi-Wan Kenobi. But of course I would let my son have nearly anything of his father’s after he dies. I think it would bring me both great joy and sadness to see my son still want that connection to his father after his father’s death.
None of us know when we’re going to die, right? My husband has surprised me over and over and I’ve always said it’s a damn miracle he’s alive now. But more than likely he’ll go first and will die in the next few years. I do hope that he’ll live until he’s 60 or even make it to our son’s college graduation, but I really don’t see the latter happening. I’m honestly glad that my son is being realistic about his father’s mortality because it will be devastating when Wal dies. No matter when that happens. But if our son truly believes his father will see him graduate from college and Wal dies in the next year, that’s just another layer of anger and disappointment to add to my son’s plate.
I personally fluctuate between wanting Wal’s health to at least stabilize so I have him longer, to wanting the process to speed up because watching him die slowly is torturous. He’s often miserable due to pain or fatigue or the inability to do what he used to do or the fear of dying the way he doesn’t want to. I have new wrinkles etched into my face from the worry and anxiety and sadness of watching Wal go through all of this. And yet…I wouldn’t have it any other way. This is a very long goodbye, but I think I’d rather have that if I get the choice (not that any of us really do).
I have no resolutions at all for 2026. I have a few things I hope to accomplish, but my priorities are really just to be the best support and cheerleader for my son and my husband. I hope to not lose myself or my own health in the process, so that’ll be on the list, too.
But I hope YOU have goals and dreams you hope to achieve this year. I’d love to hear about them. Really! It might be weird, but typically I am that person who celebrates when someone wins the lottery and it’s not even someone I know. It’s exciting! So if you have that trip to Europe planned or you’re finally getting that pet you’ve always wanted or you are going to work on your living will this year, then I’d love to hear about all of it. And I’m happy to help you with that last one. 😉
My brother died 100 months ago today (8.25 years). Is it weird that I know this? Kinda. But it is what it is. I recently met a man whose wife died less than a year ago. If you would ask how he was doing, the first thing he’d say was how long it has been since his wife died. That was the first gauge he’d use to test his well-being. Instead of “My knees hurt” or “My head doesn’t hurt today” it was “My wife died 8 months ago. I’m…”
Yeah. I’m….here? Hurting? Exhausted? Living when she isn’t? Probably all of those things.
There are times when I worry I’ve forgotten what my brother was like. I know my own perspective of what he was like is different from anyone else’s. We all have our own memories and interactions. I was recently reminded of how he could be a real jerk at times. And although I know that and recognize it, he wasn’t usually like that to me. As a kid? Definitely. I was his baby sister and could be a pain in the ass and he didn’t always want his sister tagging along. But by the time I was a teenager, I don’t ever remember him being nasty to me. He was honest, sometimes brutally so, but it usually came from love. Am I looking back with rose-tinted glasses? Oh probably. But I’m ok with that. Phil was still the person I connected with more than anyone. I admired his writing talent and how he was true to himself. He was the first gay person many of my friends had ever known and I can only hope that him being out helped others be true to themselves, too.
I started thinking today about our last meal together, here in my house at my kitchen bar. We were eating supermarket sushi and I kept getting up to get stuff–water, napkins, whatever. He pulled me down to my seat at last, and said, “Just eat with me.” So I did. And now that I think back on it, it’s like he was trying to prepare me. It’s like he was trying to tell me, “Be in the moment, Holly.” He died almost exactly a month later.
Since then I TRY to be in the moment and appreciate what I’m doing or what’s going on around me. I don’t always succeed but I do try. Yesterday was a good example. My husband and I had a day of errands planned, with a yummy lunch thrown in the middle. The morning started out pretty rough. Wal was having a hard time waking up, but by the time I went for a run he was a little more awake. While I was gone, however, his oxygen kept dipping down into the 70s. It would bounce up into the 80s, but it took a bit to get in the mid 90s where he should be. To put this in perspective, medical officials say you should call you doctor if your oxygen is at 92% and to go to the ER when it’s below 88. Wal kept saying it’s felt like all the air was being sucked out of the room. He was finally able to take a few deep breaths. The oxygen levels got a bit better and eventually he felt good enough to take a shower. Everything takes a bit longer these days, but we were finally able to get into the car. I reminded him that he only needed to get out of the car a few times, so not to worry about my very long list of errands.
It took us nearly 5 hours from the time we left the house until we got home, but it was tremendously satisfying. I was able to check everything off my list–returning unneeded purchased items, taking back cans & bottles, grocery shopping, even one Christmas gift purchased–and picking up heat tape for our pipes.
Once we got home, I put everything away and Wal sat in his office for a bit. He told me that after a bit of rest, he needed to show me how to shut off the water for our trailer pad next door. We would need to go to the basement to do so. “You’ll need to know how to do this,” he said. This was his way of prepping ME for the end of his life, as well as preparing himself. But for him to do this, to make it down the basement steps and back up again? It was dangerous. I didn’t realize how dangerous, until I saw him cling to the banister doing down. After showing me how to shut the water off, he walked around the basement for a minute, looking about. He hadn’t seen it since my sister moved some of her things in. I’m glad he looked around because I’m not sure he can make it down there again. I had to help pull him back up the last few steps due to how weak his legs are.
Today, we traipsed out to our trailer pad next door. When we lived in a trailer here, there was a pipe underneath the trailer that connected to the well on one side and the pipes to our home on the other. That pipe has to be wrapped in heat tape (heat cables) so our pipes won’t freeze. The trailer has been gone for over 20 years, but we still have to wrap the pipe. I have been very fortunate to NEVER HAVE DONE THIS BEFORE. But that ended today.
After my run this morning, Wal & I took the new heat cable and scissors and electric tape out to the trailer pad so he could show me how to remove the defunct heat cable and how to wrap the pipe with the new one. I dug out a chair for Wal to sit on and a knee cushion for me so I wouldn’t tear my knees up on the cement. This whole endeavor only took 45 minutes, but it felt soooo much longer. This is all new territory for me, but I’m grateful Wal is showing me what I’ll need to do when he’s gone. I honestly hate this kind of stuff–I really am more of a diva then I let on–but you do what needs to be done, right?
The rest of this afternoon, Wal has spent resting and warming up (the cold affects him more than it used to). I’ve done my usual–a bit of cleaning, laundry, reading, writing–but also things like tightening up the screws on the back of the toilet seat. Something I’ve done in the past but was usually a “Walter job.”
I know that my single friends out there have done everything themselves all along. They’ve raised children, cleaned, cooked, fixed things in their home, and worked full-time outside of the home. And I’ve always been in awe of them. I mean seriously, these are super humans.
But I’m not like them. I am not mechanically inclined. I hate to paint walls. I still don’t know the names of many tools or how to use them. If I had my way, I’d pay for someone to do a lot of this shit that I despise. I’ll never have that kind of money, so I need to just suck it up.
Yet…I do feel empowered. I now understand some of the stuff my husband has done around our home for the past 20 years. I still hate doing it, but I’m glad I have the knowledge on how to do at least some of it. Each thing I’ve learned regarding our house, has lessened my anxiety by just a bit. When Walter dies, and if I’m still alive, there will be plenty of stressful work to be done, house repairs not included. So having any kind of knowledge about these types of things will help the future me.
I know Youtube will be my friend after my husband is gone, but every house also has its own personality, you know? Certain steps squeak or some marks on the wall might remind me of my brother (who painted my kitchen) or my husband (who painted nearly every other room in the house). There will be some things I’d never change or fix, and others I know I really need to as soon as next spring. And hopefully Wal will still be here to guide me for another few years.
For now, I’ll keep learning and probably griping. Walter told me how proud he was of me today. So maybe along with my whining, I can feel bit of pride in what I accomplish in our house.
Today is not a perfect day, but it’s had some tremendously wonderful moments.
Today has been about running, reading, writing, walking, and treating myself well–hence the drink made of raspberry puree, limoncello and lemon sorbetto. At home, a salad for lunch must be followed by a delicious drink. Pretty sure that’s a rule.
My son is home sick today, which is why it isn’t the perfect day. Although he isn’t feeling well, it’s still nice to have him home. I won’t have a lot more of those days.
High school graduation, 6/7/25
The weather in central Maine today is my kind of beautiful. It’s sunny but with the occasional cloud to give us Northerners a short reprieve. There’s a decent breeze to keep the bugs away. It’s just a tiny bit humid, but nothing this breeze can’t fix. While sitting on my porch, sipping my drink, you can hear the distant whirr of a lawn mower and the chittering of the birds in the treetops in my backyard. Perfection.
None of this really seems worthy of writing about. Yet, so many of my days are filled with anxiety or depressive episodes or grief, then why the hell aren’t I shouting to the world about these few good days?
I mean, I’m also thinking about what the future holds for my little family. My husband and I talked a bit last night about what kinds of food we’d want at either of our celebrations of life. “Do I want lots of my own favorite foods or is that just irritating since I can’t be there to eat it?” I asked my husband. He shrugged but said he does want the plate of cold cuts (with his ashes in the middle—this is even in his will) and Dr. Pepper, his favorite drink.
Today we chatted a little about the book I’m reading, “Cold Moon: on life, love and responsibility” by Roger Rosenblatt. This short book of moments Rosenblatt wrote as he approaches “the winter solstice of his life.” When I read that line, my husband nodded his head and raised his hand. “Me, too,” he said clearly and confidently. Walter has had many good days recently and during those times it’s easier for us to talk about his death. We chatted over the weekend about what I would write for his obituary, if he dies before me. The conversation began with my telling him about another book I just read, John Kenney’s novel, “I See You’ve Called In Dead.” It’s about an obituary writer who gets drunk one night, writes his own ridiculous obituary and publishes it. Walter asked me, “What would you write about me?”
Sometimes my husband’s vulnerability still takes me by surprise. The way he asked me this question was just so….sweet and curious and a bit nervous. But I told him I’d tell the world how smart he is. Most people just don’t know. His vocabulary has always been so much better than my own. He doesn’t have a college education but a GED and several computer repair certifications. But he understands how mechanical things work, his knowledge of American history still shocks me and his love for science has propelled him to educate himself regarding space and our solar system.
But also? He unties the knots I always get in my necklaces. He used to let me warm my feet on his legs. And this might seem icky to some, but he warms the toilet seat for me in the wintertime. When your bathroom has no heat, that porcelain seat is like ice and it fucking hurts to sit on it, so he sits on it first. He also hates it when our son works at night. He’s constantly worrying and missing him. Like me, he loves spending time with our child and is starting to feel that anticipatory grief of our boy going to college.
So…yeah. My brain is constantly filled with tasks that we’ll need to do before the time comes. But we’re not going to do those tasks today. Not today.
Today is nearly perfect, after all.
Hugs to all of you, my friends. I hope it’s been a nearly perfect day where you are. ❤
This year, my Memorial Day weekend was bracketed by funerals. It began with a service for the 56-year-old sister of my dear friend. The funeral home was packed and there were beautiful speeches and stories, laughter and sobbing. I held the hand of another dear friend as we listened to our “soul sister” speak through her tears, telling the room about her big sister. Her death was a shock to all of us, since her illness was so brief.
The weekend ended with the funeral of my hospice friend. I had been visiting him and his wife at their home nearly every week for 2 1/2 years, and although he was 80 and had been ill for some time, his death still felt very much unexpected. His wife had invited me to his funeral and to their home afterwards. The service was led by the hospice chaplain and it was filled with Bible quotes, a few songs, and both his wife and daughter stood up to briefly speak. It was a small affair.
As I drove to my hospice friend’s home, I stopped to get a coffee and cry in my car. I wasn’t feeling bereft for my hospice friend, but for his wife. Watching her through this entire process–the entire 2 1/2 years–has always made me look at my relationship with my husband and his illness.
When your spouse is chronically ill, you do have a relationship with the sickness itself. It’s not a great one. Mostly I hate it. And yet there have been times that I was grateful, but more from spite. The anger I have at my husband for his unhealthy habits throughout our marriage (and beforehand) has burst through over the past four years. That’s the part of me that was happy he was sick–a justification for what I had been saying over the years, or when I begged him to take his insulin and he didn’t, or asked him to go for a walk with me and he refused.
But now? Now I just hate it. My husband is always fatigued, often in pain, can do very little. He’s currently in a depressive episode, too, which makes everything so much worse. Over the weekend, in between the funerals I attended, we had a conversation about our son and what his future might hold. “Senator Chapin,” I said, grinning. My husband nodded and replied, “President Chapin has a great ring to it. But I’ll be long gone before that could ever happen.”
I was stunned momentarily because the look on his face was this mix of sorrow and regret and I immediately just fought back with, “Well, I could be dead, too!”
The rest of that day I had a nugget of guilt in my stomach. Why didn’t I just acknowledge that yes, he will probably die much sooner than later? Because although I freely talk about his likely death, talking with him is much more difficult. He typically doesn’t acknowledge how sick he really is, so when he finally did, I just batted it away.
That night I apologized to him. He said it didn’t bother him, but he also didn’t really want to talk more about it. I missed my chance to have an open conversation that night. Hopefully I won’t squander that again.
After arriving at my hospice friend’s home, I got to know their friends and family a bit better and we had lovely conversations about my friend and how they knew him. There were also two other widows in attendance, besides my friend’s wife, and they were talking about how they had been coping over the past few months. One woman has been a widow for two years and has been navigating this new world the longest of the three women, and was giving out advice left and right. I wanted to tell her to be quiet and let my friend’s wife find her way. I kept thinking, “He’s been dead for 10 days. Let the woman catch her breath and just be there for her. Stop telling her to join book groups and grief groups, for fuck’s sake.”
I know their heart was in the right place, but I could feel my own anxiety ratcheting up. Will this be my life? Will I have to take time off from work, take care of my husband for several years while watching him become more feeble, then after his death I’ll have people telling me not to make any big decisions, but encouraging me to get out and meet people and not be alone?
I had to take a few breaths and calm myself and just continue to listen to everyone talk. My friend’s wife is a tremendously strong woman and I know that she’ll be ok. She does have a good support system and I may be part of that.
When I got up to leave, my friend’s wife took me aside. She and I have grown close over the past few years. She knows my husband has congestive heart failure and Type II diabetes and understands that he will not live to be 80 like her husband. She held my arms and looked me in the eye. She told me she knows how hard it is dealing with my husband’s illness, his depression, his what seems to be apathy about his own healthcare. “But he’s still here, Holly. You can pinch him. You can talk with one another. He’s still here.”
My eyes were welling up as she spoke to me. I hugged her before I left.
When I got home, my husband was resting. He got up then and we talked in the kitchen while he worked on dinner. (He’s still trying to make dinner a few times a week.) I told him a bit about the service, then I went over to him and pinched his arm. “Ow! What the heck was that for?” I laughed and hugged him and told him what my friend’s widow said to me. He nodded then with a sad smile.
I am trying hard to appreciate the time I have with Wal. I get very frustrated by a myriad of things, as anyone married I’m sure can attest to, but the widow’s words are reminiscent of what someone said to me before my parents died. That day I was feeling a bit frustrated that my weekend was filled with visiting my mom in the nursing home and then taking care of my dad for a bit the next day. It honestly sounds so shitty to say that out loud now, but I was being honest. And a colleague said to me then, “I get that, but man, I wish my parents were still here for me to take care of them.”
I never once complained about that again. My weekends were often filled visiting my parents (and still parenting my own kiddo) and I felt pretty stretched, but I did start to appreciate it more. So I’m going to try and do the same now.
But I’m also pretty confident you haven’t heard the last from me on this topic. 😉
Hugs to you all, my friends, and as always, thanks for listening. ❤
Oh! And if you’re wondering what my husband’s “Forever Chair” looks like, I’ve updated the post with pics.
Grief is loss. Pure and simple. You grieve a dead loved one but you can also grieve a job loss, a friend moving away, or even what you thought your life would be and now is impossible. This past week was filled with tiny losses and combined with anticipatory grief I’m feeling, I’m finding myself unable to take a deep breath.
Last Saturday, my husband and I went furniture shopping. We were looking for his “forever chair” (trademark pending). He needs a recliner where he can sleep when breathing is difficult or nap during the day when all of those meds kick in and it’s hard to stay awake. He wanted something where he could lay down but with a headrest that could elevate his head. When we found all of the electric recliners together, my husband started trying out a few chairs as we chatted with the salesperson. We explained to this 27-year-old woman that Walter was no longer able to do what he used to and he wanted to purchase what would be his last chair. She said she hoped it wouldn’t be his last, then went on to explain how she understands about body changes. Before I had a chance to roll my eyes, she talked about how she used to do gymnastics and after 13 years she stopped and now her body doesn’t respond or look like what it used to.
Ok. I could give her some grace there. A little.
After just three chairs, Wal found his “forever chair” that reclines, can elevate his head, has a back warmer and can lift him to standing position for the future (or those particularly bad pain and unsteady days now). We ordered a different color then what they had on the floor, then went out to eat to celebrate this purchase. I drank a flight of margaritas (I can’t believe I never knew that was a thing!) and went to one more furniture store so I could look at sofas. Before Wal was granted disability, we would talk about what we needed or wanted for the house. Having a recliner like what we bought was exactly what Wal talked about. It was as close to a hover chair from the Wall-E movie that he could get. (He’s been talking about those damn things since 2008.) And I wanted a new couch so we could get rid of the saggy, smelly, broken brown couch we currently have. I wanted something in a lighter color with a chaise lounge.
Bean loves the old couch, but I’m sure he’ll love the new one, too.
We walked into the furniture store next door to the restaurant, me feeling a little buzzed, and we tried out chairs and couches and felt different fabrics. We had been having a lovely day and we were relaxed and Wal’s pain was nearly non-existent. I wasn’t really planning on buying anything there until I saw the couch…with bookshelves built into the sides. The adorable salesman must have heard my gasp from across the showroom, because he appeared in seconds. The couch wasn’t quite what I envisioned, but then he led me to the sofa I had described PLUS the bookshelves, hidden storage, AND pulls out into a small bed.
Wal was immediately like, “Oh we’re getting this!” I could see my delight reflected in his face. So we sat on the sofa, both tried out the lounge, and we snuggled in for a few minutes. This was the one.
The snuggling was what won me over (and the bookshelves). See, my husband has been tremendously claustrophobic since a snow cave collapsed on him when he was 10 years old. After he was on a ventilator in 2020, this anxiety about being closed in or not being able to breathe has increased tenfold. So snuggling in bed while lying down? That hasn’t happened since 2020. Our couch is too low and saggy for him to sit on and be able to get up from, so no snuggling there. But now, with this new sofa, we can finally have that one little piece of our life back.
As we sat there in the store, Wal turned to me and said, “I want you to enjoy the hell out of this couch when I’m gone.” His eyes were sad, but he said it with a smile. I squeezed him tight and said I would.
The rest of that day was so joyful. No arguing, no grumpiness, no sadness really. It was a great day.
But you can only live in the afterglow of days like that for so long. The next day I was filled with so much sadness and what I now realize is anticipatory grief, that I couldn’t function. I took a walk, hoping I’d feel better afterwards, but that didn’t help. I listened to an audiobook, read a little, tried to write, drank wine—nothing made me feel better. And I couldn’t “do” anything, you know? I wanted to vacuum, plan meals for the week and clean my bathroom but none of that happened. Hell, I thought I’d take a bath instead and shave these long gams of mine, but that felt like A LOT of work. I ended up eating too much, drinking too much and finally just going to bed.
The rest of this week has been filled with little losses and some larger ones for my friends. I submitted written testimony for a bunch of anti-trans bills many Republicans in the Maine legislature wants to put through and although I was happy to do it, it made me so angry and sad and frustrated. My dear friend lost her sister unexpectedly due to cancer and it shocked me to the damn core. Some of my colleagues in the Maine library community had their last day at work this past week due to federal funding cuts. Their last day happened to be the second anniversary of my first day at the Bangor Library, but I couldn’t celebrate because it all felt so wrong.
Thinking about that work anniversary made me think about my first work anniversary as a library director. One of my dear patrons, Jan, had wanted to have a day-long celebration at the library with coffee or donuts for everyone, but my husband was in a coma at the time. We didn’t know if he’d live yet or if he had brain damage. So there wasn’t any kind of celebration. Those little things we don’t feel like we can celebrate is another form of loss. It’s like the people I know who have their birthdays on 9/11. It’s frowned upon to have a party on that day even though you want to celebrate your own life and absolutely should.
I know that not having those little celebrations isn’t really a big deal, but I kept feeling like those little losses were piling up on me. After the weird week, my husband and son were going to take me for an early Mother’s Day lunch today, but they both got sick. Then I had slightly uncomfortable conversation with a friend regarding politics and an email exchange with a co-worker that filled me with self-doubt. I then went to my mom’s grave wanting to talk to her but the lawn was being mowed at the cemetery and they were in her section. So I brushed off her gravestone, told her I loved her, kissed my hand and touched her name, then left more bereft than before.
I got home, started to talk to my husband about how I was feeling and I kept my arms across my chest holding myself. I know my voice was shaky and our son heard it. He came out to the kitchen where I stood, and enveloped me into his giant embrace. When your son is 6’8′ and a big guy, it’s the most comforting feeling to be hugged by him. I ended up sobbing because I couldn’t hold it in any longer. I was feeling so…weird. I can’t stop thinking about my friend losing her sister and I know that is leading to more thoughts about my husband’s health (her sister and my husband are the same age) and I just wanted to talk to my mom.
But a hug from my son was almost as good.
Wal came over and hugged us both. I dried my tears, put my feelings into a box and went on with the day.
The day is nearly over now. I just got back from a long walk while listening to All There Is, a podcast with Anderson Cooper that deals with grief. I listened to other people talk about their grief and cried along with them. Some people think I’m bananas because I often read about death and dying and grief or listen to podcasts like this or watch films about it. But I have to tell you that listening to others share their grief typically brings me comfort. I no longer feel alone in my own grief. Listening to others’ stories helps me keep living.
And telling you my story helps me find joy in living. Writing helps me find those breaths that seem nearly unattainable under the weight of grief and rage I feel some days.
So thank you for reading. Thank you for helping me to breathe again.
Tight hugs to you all.
UPDATE 5/25/25:
Here’s Wal, trying to relax in his “Forever Chair” with Wonder Woman looking on. Well…there are two of us looking on. 😉
And here’s my “Island of Peace” as my friend, Diane, calls it. As you can see, I’ve made myself at home–a basket of books, water and a margarita, the two books I’m currently reading, and my kitty blanket (thanks, Mo!).
Sometimes a memory of your dead loved one will bonk you on the head when you least expect it.
I facilitate a book discussion group at my library called “Grieving Through Reading.” It was initially created by a volunteer but she never officially started the group due to a change in workplace. When I was asked to do this, I said yes before the question was fully formed. As you know, talking about grief, death and dying is what I enjoy doing. I guess it’s really the sharing of grief and being able to provide comfort is what really brings me joy.
This week, “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande was our book choice. There is an hour long documentary of the book that we didn’t have time to watch. So I started our discussion with a short clip from the film, where Dr. Gawande is discussing what his father’s doctor communicated to them regarding treatments for his cancer. The doctor was encouraging the father to take the chemotherapy and said, “Who knows? You could be playing tennis by the end of the summer.” This was absolutely ridiculous. As Gawande tells it, his father was weeks from being paralyzed. There would never be tennis playing again, yet the doctor tells this foolish and utter lie.
As my book group is in the room watching this clip, I suddenly get a flashback at what my brother’s cardiologist said to him just a month before he died. Phil was going to have surgery where a VAD (ventricular assist device) would be implanted to help his failing heart to pump blood to his body. Phil wanted to wait until early winter to do it. His doctor said that the surgery would prolong his life and he’d visit my brother and his partner on their anniversary in several years time.
What a bunch of horseshit.
As I sat in the room with my book group, watching this video for the third time (I literally watched it the day before), it dawned on me this interaction my brother had with his doctor is just like what Dr. Gawande described. Why it took 7 years for me to realize this and at this exact horrible moment, I don’t know. (I know I can be slow sometimes, but for christ sakes this is bonkers.) I was momentarily stunned and felt such an intense fury and grief, that I wasn’t sure I could do anything. I ended up missing the ending of the video, then snapped out of thoughts, shoved those emotions down deep, and went on.
I was in a pretty awful mood directly after the program and then just kept pretty quiet. My eyes and face felt like I had been crying, although I hadn’t. I felt deeply sad the rest of the day.
But I never cried, which is highly unusual for me. It’s like a put a stopper in my soul because this bit of grief and anger felt too big to deal with.
Today, however, it’s slowly seeping out. I’ve thought about Phil more and more these last few days. I want to figure out the name of Phil’s doctor and write him a letter, although the energy that would take at this moment seems too much. I had this sweet text exchange today with my former brother-in-law about my son and how proud my family would be of him. I mentioned it first, and my BIL said he didn’t want to say anything because he didn’t want it to land wrong. But after he saw my son a few weeks ago, he said all he could think of was how fucking proud Phil would be of him. I wept when I read that.
I’m angry that Phil’s not here to see this kid turn into a beautiful young man, but I’m mostly feeling bereft. I wish someone had been more honest with him about his chances. I wish I had been more honest with myself. Phil knew he was going to die and maybe he knew the doctor was full of shit. I wish I could ask him. I wish Phil was here to talk to my boy about the colleges he’s applied to, the amazing stories he’s written lately, and the political climate of our country. Phil would have many things to say about all of it. I still remember Phil telling me how good one of my son’s stories was when he was in 3rd grade. Phil could see that potential, and I’m so glad he did. I hope he had an idea of how his nephew would turn out.
I’m doing a lot of wishing and missing tonight, big brother. I love you. We all love you. And we miss you so fucking much. ❤
It’s been a few months since I’ve posted anything here. So much has happened in my life in the past two months–some of it good, much of it horrible.
Our family friend, Virginia Cookson–my niece’s best friend for over 25 years–was murdered by her ex-boyfriend at the end of September. I’m not ready to write about what happened, and may never. It has changed all of our lives in ways I’m not sure we can define yet.
My niece has been speaking about Virginia in public presentations, and I’m tremendously proud of her. I know how hard public speaking is for her, yet talking so openly about Virginia may be cathartic at times. But fuck…it’s also like having to speak at her funeral over and over. My niece is so damn strong, even though she’s not always aware of it. I also know that strength, or people expecting you to be strong, is exhausting. But she knows our family and some of her lovely friends will support her and prop her up when she just can’t stand anymore.
Since Virginia’s murder, my sister has become an advocate for domestic violence victims and I can see that this will end up being part of her life’s work. Virginia was her “other daughter” and her horrible death has propelled my sister to fight for others, to speak for those who can’t, in the hopes of saving at least one person from domestic violence. My sister is a survivor, too, and I’m so damn proud of her for volunteering, getting the word out, trying to make a difference.
As for me? I will support my family and Virginia’s daughter in any way I can. I will advocate for domestic violence victims and I will do what I can to make sure Virginia’s murderer goes to jail for life.
But I think that’s all I can do.
I’ve felt this wide range of stressors pressing me down to the ground since Virginia was murdered. One day last week, I was unable to get out of my car for what I think was a few minutes but felt like longer. I started to think about the variety of “things” I had on my plate–my responsibilities both at work and at home and every single thing I’m worried about. Typically when this happens, I have an anxiety attack and have trouble breathing. But this time I just couldn’t move. Everything was just too fucking much.
A week after Virginia’s murder, I took my husband to the emergency room because he couldn’t breathe and his heart rate was in the 130s. While we were there, his blood pressure rose to 224/146 and a heart rate of 141. He became delirious and told me he loved me and that he would miss me. I remember staring at him as he said it then standing up and petting his head, kissing him on the forehead. Was this it? Was this the day? This was October 4th–five years to the day that my mother died. I started talking to Mom in my head. “Mom, this is your day, right? I’m thinking Wal shouldn’t share that day with you. He can die another day, don’t you think?”
He was eventually stabilized, diagnosed with pneumonia, but didn’t come home for 5 days. And when he did come home? He came home with oxygen. He used it for a few days, but not enough in my opinion. He now uses it occasionally when he has rough days or nights. Will it be forever? I’m not sure. It feels like the next stage in congestive heart failure to me. But I honestly don’t know.
Then this week? We’re fighting with CMD Powersystems who caused a propane leak at our house and could have blown up our home and killed my family. I asked to have a bill paid to another company that had to fix said leak and to fill our propane tank. That’s it. Since that’s not happening, I’m going to take them to court. I refuse to let this company to take advantage of us. If they think not taking responsibility for this huge mistake is ok, they are sorely wrong. I’m done being a fucking doormat.
On Wednesday, I was verbally assaulted by a patron–this is not something I say lightly. I’ve been yelled at by patrons before, most people that have worked with the public experience it one time or another. This time though the guy called me some particularly nasty things, but what was scary was how his face changed. As I was explaining a particular policy, it’s like a mask fell from his face to show me what a cruel bastard he really was. The nastiness started shortly after. I had planned to take the next day off, and although I had a meeting via Zoom I was going to attend, I bowed out of it and took care of myself instead. I ended up having a pretty great day with my husband and son and put everything work related aside. It felt like a huge deep breath.
And then the next morning, we found out our beautiful doctor, Adam Lauer, died from pancreatic cancer. It was such a friggin’ kick to the chest. I often talk about Adam and did so a few years ago in my post about having part of my pancreas removed. We knew Adam had cancer and would die much earlier than we would, but he had such hope that he’d get into clinical trials. He did everything he absolutely could to be there for his children, but fucking cancer took him anyways. Adam made such a difference in hundreds of lives in this area. I honestly feel like he saved my son’s life by working through some of his depression through medication and therapy.
Today I went to the visiting hours for Adam. I canceled my appointment with my hospice folks that I visit each Sunday, and went to pay my condolences to Adam’s family.
It was awful. There were many people in old house that has been converted to a funeral home, and there was a line to shake the hands of some of the family members and to see Adam’s body. I was ok at first, but the longer I stood there I knew that I wouldn’t be able to tamp down my emotions. As I said “hello” to Adam’s dad, I choked out how his son had been my doctor and my family’s and how much we cared about him. His father, also a doctor, told me how when he was a young adult, his doctor died. His doctor was a lot like Adam, he said, and he was devastated and thought he’d never find another such a great doctor again. And then Adam, his son, became his doctor. “There’ll be another good doctor for you,” he said. Here was this man, having lost his son, trying to comfort me. I thanked him, told him how tremendously sorry I was, and moved on. I could not tell him how much more Adam meant to our family then just our doctor. We cared about him and he cared about us. He swore like a fucking sailor and he made us feel so comfortable with anything and everything. He never put a time limit on our appointments and he always explained everything in a way we could actually understand. He created personal connections with many of his patients. He never felt like “just” our doctor. There was no one like him.
I miss him. We all miss him. Adam Lauer made a difference in our community. One can only hope to affect the world like he did.
And now…I need to put all of those events in little boxes and file them away. I need to finish washing the dishes, fold laundry and prepare for the work week ahead. Just like we all do, right? I will go to bed tonight, breathe through my range of hot flashes, listen to make sure my husband is still breathing, and hope I can sleep through most of the night and not wake up at 3:30 with my mind swirling in every bad direction it could possibly go. Then I’ll wake in the morning, drink a cup of coffee, get the kid up, and do my best to make it a decent day.
I’m not sure there’s much else we can do, is there?
Please try to be good to yourself this week. It’s gonna be a rough one. ❤
This weekend, my husband and I had “the” conversation. Within any marriage or long-term relationship, there are many types of big, important discussions. Before we were married, I told my husband I did not want children. I knew that he did, but it just wasn’t something I wanted when I was in my 20s. He loved me enough to marry me anyways. Then in 2002, five years after we got married and a few months after my stepfather died unexpectedly at the age of 58, Wal and I were sitting in a Wendy’s in Bangor. We were reflecting on my stepdad’s life and talking about my mom’s future, when I blurted out that I think I wanted kids after all. My family is so wacky and weird and wonderful, why wouldn’t I want that to continue? Of course then it took 4 more years until my boy was conceived due to my endometriosis, but he was well worth the wait.
We’ve had other conversations that should have been tremendously impactful for us both, but often they were not. Talking about debt, sharing household chores, and parenting are the first ones that come to mind that have had only short-term effects.
But in the past few years, Walter and I have talked a lot about end-of-life. This is partially due to my brother’s death, then my parents and my father-in-law. We wrote out our living wills the month after my mom died in 2019, which happened to be just three months before Wal ended up on a ventilator and in a coma. We’ve both changed our living wills a bit since then, having learned the hard way what we want and don’t want our bodies to go through.
This past year, though, has been particularly difficult to talk about death when it seems like it’s much nearer than we thought it would be at this time in our lives. I may have been volunteering for hospice for nearly two years now, but it’s so different when it’s your own spouse. This weekend, my husband admitted that he’s finally seeing how sick he really is. He realized that some of what he was able to do last summer he can no longer do. “I hope I’m here at this time next year,” he said to me last night. We started to talk about his beliefs after death, how he’s not scared to die but doesn’t want to. But also how tired he is. When you have congestive heart failure, your heart WILL stop working at some point, and right now, his heart is working overtime.
Most of the time I have faith that my husband will live another 6 or 7 years, maybe even 10. (He does have incredible longevity genes, and most people in his predicament would have been dead a year ago.) But after the week we’ve had, with constant pain, tremendously high blood pressure and heart rate (but not quite enough to go to the ER), and high blood sugar levels, I’m not so sure about the number of years anymore.
There was a LOT of caregiving to do this past week due to a wrist injury Wal incurred a month ago. It gave me flashbacks of when my mom lived with us for those two short and exhausting, stressful months. And possibly a glimpse into our future? I can already see that I will either need to change my work schedule or honestly, not take care of myself as much as I do right now. I’m fortunate that I have the time to walk before work (unless I don’t sleep well, which is happening every other night lately) and I sometimes walk at lunchtime while the weather is still good, then workout at the gym after work a few nights a week. But that’s leaving my husband alone a lot. Am I frustrated by his lack of social circle? You bet your ass I am. I can only encourage so much, then I have to let it go. But…the guilt does set in. He’s told me before that he wants me to live my life but then admits he gets lonely.
And I keep thinking, “What if this really is his last year?”
I made time for my parents and brother in the last years of their life. I didn’t realize it was the last year for my brother, but I made time because I loved being with him. I knew my parents’ time was short, and I wanted to make sure I did right by them. And although I often enjoy time with my husband, this just feels complicated. Maybe because there’s a lot of anger towards him for not taking care of himself for our entire marriage (and before)? And because our son won’t have his dad around for much of his adulthood? Probably.
But…I still want to do right by my husband. We’ve been together for 29 years, married nearly 27. When you’ve been with someone that long, you know so much about them, including when they are scared or hurt. I have a lot of empathy for people, but I feel the pain and fear and disappointment that my husband is feeling. So I’m trying to make his life AND death to be whatever he wants it to be, but it’s not easy. I often feel helpless and frustrated and sometimes I just want it to all be over.
And then I think about this goofball, and say “Nah. You can keep going, old man.”
See Holly Run 