life

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Canceling Plans

I facilitate a grief book group at my work. Because of the group and because of my interests, I’m always reading about death, dying and grief. This past month we discussed “The Grieving Brain : the surprising science of how we learn from love and loss” by Mary-Frances O’Connor. It’s absolutely fascinating! I have post-it notes all through the book, marking phrases and words I didn’t know but now want to remember–like “counterfactual thinking.” That’s when you think “If I had just told him to take his blood pressure pills, he’d still be here.” Or, “If the doctor had done this, then she’d still be alive.”

The word, “zeitgebers” or “time givers” was a new one for me, too. O’Connor defines zeitgebers as “those environmental clues that synchronize a person’s biological rhythms to Earth’s twenty-four-hour cycle of light and dark.” (p. 171) She talks about zeitgebers related to falling asleep, like a period of watching tv or reading before going to bed, or the warmth and smells of the person you’re going to bed with. So when your partner is no longer there, this lack of zeitgebers relating to them can cause rumination about the person you’re missing. That lack of your spouse’s snoring or the smell of her lotion are additional reasons why we start to think about them. It’s not always that something reminds us of them, it’s the LACK of the thing that reminds us. And we wonder why we can’t sleep when we’re grieving. (Of course, there are SO MANY reasons why you may not be sleeping right now. Grief may just be one of many reasons.)

It made me start to wonder how I’ll react to my husband’s absence. What will I miss?

Because of his breathing problems, Wal hasn’t slept in our bed for over a year. So the snoring that always put me to sleep, hasn’t been there for quite a while. So I probably won’t miss that. But missing his smell? Yeah. Especially that piney, clean smell from his soap and beard oil. His laughter? Hell, yeah. I miss hearing the laughter of every single person I’ve lost, don’t you?

Do I like to think about this?

No.

And yet…I can’t help it. I think it’s part of anticipatory grief. I feel so damn sad and lost now, so it’s natural to wonder what I’ll be like afterwards. I was so untethered by my brother’s death and so fucking lost, and part of me is afraid that I’ll be like that. But I just CAN’T BE LIKE THAT when my husband dies. I just can’t. I’ll be alone and I am the person responsible for taking care of everything. Just like I am now. But…not like I am now at all. I still have him here to bounce ideas off of or get advice. He’s still here so we can plan for tomorrow and plan for when there is no tomorrow.

I already miss how strong he used to be–those thick, muscular legs are now only thick with fluid because his fucking heart doesn’t pump the way it should. His arms are so much thinner now. He used to be able to carry all the groceries in at once for me. Now, when he’s particularly ill, I have to open soda or water bottles for him because he doesn’t have the strength to do it.

Before you say, “He’s still here so enjoy it! Spend every minute you can with him! Be grateful!” I want you to stop and not say any of those things to me. Ok? If you do, I may not talk to you anymore. Do I enjoy my time with Wal? Very often, yes. Every day or every minute? Fuck no! I don’t love every minute of every day with anyone, including myself. So don’t you fucking dare to tell me to be grateful. I love my husband. There’s no doubt about that. And I am grateful for much of the time we’ve had together and will have. But being a caregiver, even one like me who still works outside the home full time, is so….

fucking.

hard.

A few months ago, my workplace gave me the opportunity to go to a national conference that I’ve ALWAYS wanted to go to since I became a librarian nearly 30 years ago. Much of it would be paid by my work and I’ve been so excited to go. But I’ll be gone for a week. And Wal has been very unwell for this entire month. So after trying to get doctor recommendations about his health and getting no answers, we finally have a referral to get an evaluation to see where Wal is really at. Is he ready for hospice care or remain with some sort of palliative care? We might get some answers in the next few weeks. But since we still don’t have ANY recommendations, I ended up canceling my travel plans for the conference.

I can’t bring myself to sit with my feelings about canceling the trip. My brain tells me this was the right thing to do. If Wal had a week like he had this past week, I would have come home early anyways. It was a particularly rough, rough week–very low oxygen levels, little to no eating, weak, etc. Today, however, he is feeling pretty damn great. He can eat a bit more and is awake and is smiling. It’s really joyful for me to see! These good days are so rare. It might be only the 2nd or 3rd good day of the month, so this is when we celebrate. If he felt really good while I was away, then I’d be ok about leaving. Probably. But an entire week of him feeling good? That is just magical thinking.

My heart, however, is a bit torn about the whole thing. Here’s the thing: I’ve been married as long as I’ve been a librarian. We eloped two weeks after I received my Master’s degree and two weeks after that started my first professional librarian position. So the two are completely entwined. Does my husband mean more to me than my career? Yes. Most days. 😉 I’ve been with him for nearly 30 years, BUT never been to this conference. The cost of it is typically too much for me to go and it’s only every other year. So…I really wanted to go. There were sessions I wanted to attend and learn from, and authors I wanted to meet. But…how could I go when it’s in Minnesota? I can’t drive home. If something happens, I would need to fly home which obviously takes time to change flights and all that jazz. I may have people nearby that could lend a helping hand to my husband, but not me. Not his wife. Not the one whom he knows he can rely on. Not the one who wants to be with him until the end.

So…I just need to let it go, don’t I? I have to realize that my current life is not what it used to be. It never will be again.

Ok, friends, I think that’s enough ruminating for tonight. Or wallowing.

Thanks for reading. I hope you’re doing ok. I really do. I may not reach out much anymore, but I think of you often.

Hugs to you. ❤

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The “Firsts” of Living with the Dying

I started an HSA (health savings account) last month. While at the credit union filling out paperwork, the agent asked me who I wanted as the beneficiary on my account. I sat frozen for a few minutes. She said, “Do you just want to add your husband or…you don’t have to!” I stuttered for a second then said, “My husband is dying. I guess I better put my son down as the beneficiary.”

It was a weird moment. It was one of those “firsts” that I had never thought about before. I knew, of course, about all the first holidays and death days and anniversaries, but while someone is ill and you know they won’t live a long time, there are other things to consider. Especially when it’s your life partner.

We’ve discussed what to do with his retirement accounts. We’re always talking about how to fix things in the house or what I’ll need to do in the future. But there are also “firsts” in caregiving. Like when he permanently started to sleep in a recliner in the living room. Or the first time I helped him get dressed, or now having to sleep on the couch a few times a month when he’s having a rough night. The first time we discussed hospice, and if his new healthcare provider will actually tell us when he’s ready or will WE have to tell the doctor. (The healthcare system and its providers are horrible at letting you make your own decisions and allowing you to have a good death. Period. Which is why we know we have to be our own advocates for not just our health, but our death.)

This past weekend, we drove to our son’s dorm to give him a few things he needed. I knew that we wouldn’t stay because there is no handicapped accessible entrance to his dorm building and there’s a minimum of 10 stairs to walk up. Those stairs have become insurmountable for my husband. When he climbs the 6 steps to get into our home, it takes all the effort he has. So when we got to the boy’s dorm, our son came out and I handed him the bag of stuff he needed. He invited us in and was surprised to realize that we wouldn’t stay. For a moment, he forgot that his father would not be able to climb those stairs and would never be able to see his dorm room in person again. It was another first. I mistakenly told Wal that our kid was sad that we weren’t going to stay for a bit. I wish I hadn’t said that, no matter if it was true or not. I tried to take it back and said he was just surprised or maybe disappointed, but nothing sounded good. The truth often doesn’t.

As much as I try to prepare for what will come one day, I know things are going to suck. My sister, who is my new neighbor, and I were looking out my living room window one day last week, watching the amazing sky as the sun set. I got all verklempt and whispered, “It’s weird to think that someday it’ll only be us here.”

Today I woke up and could feel this large mass of anxiety in my chest. I haven’t been able to shake it all day. I did get a text from my husband’s new provider to say he had to postpone our telehealth appointment on Saturday–which just irritated me to no end and certainly didn’t calm my anxiety. I feel…untethered. We’re just floating along with no direction, and wondering if he’ll just have a heart attack in his sleep (which would be the best outcome) or if he’ll keep filling up with fluid or his oxygen will dip so low and we’ll have to go to the ER where he doesn’t want to be. We know there are other options but we can’t seem to get a clear picture of what they are. If we can just get that first fucking appointment under our belt. We know what the lab work says, and we have our own interpretations of it (and what the nurse said), but Jesus Christ just talk to us so we can figure out where to go from here!

Sorry.

That last bit was my rant regarding the horrible healthcare system we have in this country. And when you live in a rural area and nearly every healthcare service is owned by a corporation that does NOT care about you, things are even shittier.

Anywho! With any luck, we’ll finally get to talk to a healthcare provider next week (it’s been 2 months since he’s been able to talk to one) and they can either tell him, “Here are a few things to make you comfortable,” or “We can cure you!” We know the latter is not true and if the dude says that to my husband, Wal will laugh and hang up on him.

So once again, we wait. This part isn’t a first for sure. 😉 In the meantime, we’ll plod along, chart his “numbers” like the freak I am (blood pressure, oxygen level, heart rate), and find little glimmers that bring us happiness and laughter.

Bean & Lima snoozing

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The Upcoming Year

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. 😉

Hugs to you all, friends.

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Always Hovering

On December 10th, Sophie Kinsella died at the age of 55. She was a bestselling novelist who wrote the “Shopaholic” series. Her real name was Madeleine Wickham. She wrote a few novels under that name, too. She had 5 children, a husband and countless friends and fans. When I read the news of her death, one of my staff and I made a quick “In Memoriam” display at the library. A few hours later I was racing home after a phone call from my breathless husband, and I wondered if I’d always remember the day Sophie Kinsella died, because it would be the same day of my husband’s death.

These are the thoughts people have when they love someone with a chronic or terminal illness.

My husband did not die. His heart rate was in the 200s and his oxygen in the 80s–to say it lightly, both of those things are very, very bad. He was vomiting and shivering uncontrollably. (Thank you to my favorite sister for staying with him until I could get home.) He didn’t want to go to the ER yet, so I sat with him, rubbed his back, emptied the bucket, and wiped his face. He was dizzy and dehydrated, so helping him to and from the bathroom was a herculean task, but we did it. Twice!

He made it through the afternoon and both his oxygen and heart rate started to improve. I slept on the couch that night so I could be close to him. I had still planned on going to work the next day because that was what I did, you know? Then I awoke at 3 am and realized that I couldn’t leave the house if he couldn’t get to the bathroom by himself. Plus he hadn’t eaten anything since that previous morning, so I knew he’d still be very weak. Because I am my mother’s daughter, I hated to call into work, especially if that would leave them a bit shorthanded. But as usual, my staff are awesome and were just fine without me.

So, I hovered near my husband all day instead of working. It had snowed so I needed to shovel the steps and clear off the cars, but I waited until he was napping to do that. It reminded me of one of my hospice clients. His wife used to hover nearby and only went outside to get the mail or shovel or garden when her husband was napping, too. We want to be there if they need anything, but also we want to be there when they die.

Although Wal is better today, we didn’t get to do what we had planned. Each year we drive around and look at some of the cool holiday lights folks have set up in the area. We drink hot coffee or cocoa and listen to Christmas music in the car. It’s been an annual tradition with the two of us for a while now, and although he says he likes the lights, I know Wal does this because of how much I love it. But this year? I’m not sure we’ll get to it. We were going to go tonight, but he just felt too awful. I had already planned to bring a bunch of homemade treats to our son and his friends, so I still did that and drove about to see a few lights on my own. I still got a hot coffee (peppermint mocha, because c’mon, it’s Christmas!) and listened to Christmas music, but it wasn’t quite the same.

One of the light displays I drove out to see in Milford. It’s wild.

I wonder if this is a peek at my future Christmas seasons. Still somewhat enjoyable, but laced with melancholy and loneliness?

Maybe.

What’s interesting about the timing of this sickness, is that earlier this week, Wal and I had argued (or rather, I barked at him and he stayed calm) about his lifespan. I think he has much less time than he thinks. When you’ve already made some decisions about your health that leads to palliative care…which is the step before hospice care, then more than likely you do not have a decade left to live. My frustration at my husband’s denial was…tremendous. I hadn’t been that angry at him in a really long time. After a therapy session on Wednesday morning, I understand my anger a bit better and understand where Wal is coming from.

Then that same day, that afternoon, he got violently ill and could have died. I think these few days have put everything into a different perspective for both of us. Wal knows how sick he is but hopes for more time. I will try to be at home more and will take time off when he’s having difficult days. I will do my best to not be angry at him wanting to live longer. I mean…why get mad at that? That’s what we all want, right? I won’t get into why I was so mad, but I do understand it. And I’m now letting some of that shit go. Because how much time do we have, and why be pissed off through any of it?

But for now, we’re still here. The kid comes home for winter break next week and our house will be loud and messy once again. As much as I like quiet and a clean home, I’m looking forward to having our boy here to fill our place with that beautiful energy he possesses. Wal and I can’t help but light up when he’s here. We look forward to seeing him each day, and even our exorbitantly high grocery bill we always have while he’s home will not dampen our mood.

Happy holidays, friends. Find all the light, love and peace that you can.

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Death, Dying, and Remembrance Week

I took this past week off from work and did a deep dive into death work and what that might mean for me. I start an end of life doula course next month through the University of Vermont and my hope is that I’ll be able to retire from librarianship in 8 years and have a small business of helping people arrange for their death.

What does that mean? I’m not entirely sure. I have many ideas, including having a small home on my property where people can come to die. (Although we have the Death with Dignity law now in Maine–a person is allowed to receive a medical aid in dying, many folks who live in any kind of long-term care facility are not being allowed to die this way. Wouldn’t it be wonderful to provide a space folks can rent so they can die the way they wish?) I would like to be able to show people the options they have for funerals or burials. I’d love to sit with folks as they fill out their advance healthcare directives or living wills and answer questions they might have. I want to be able to show people that if they have a terminal illness, they can die the way they want to. Usually. And maybe even blend bibliotherapy with end of life care or grief or both.

So how do I begin? Well, I, of course, read. I’m already facilitating a “Grieving Through Reading” group at my workplace and for that group I’m always reading new memoirs or books on how to die well or novels about grief. I’ve honestly been doing this since before my brother died in 2017. Ten years ago, with the help of my then boss, Lyn, I wrote a grant to start a five-month library program with book discussions and presentations about the end of life. After Phil and my parents died, I started a new library program called “Death and Donuts” where we had speakers on a variety of topics including hospice, spirituality, grief and advance healthcare directives. I was really doing it more for me…or maybe for the me I was before they died. I wish I had known so much more before they died.

But now I want to DO more.

Many people think talking about death is morbid. But why? It’s the one thing every single person on this planet has in common. We will all die. If you talk about your own death or write a will, this does not mean you’re manifesting death. You get that, right? If you think more about the fact that there is an END to your life, then doesn’t that make you want to live more fully or live your best life, whatever that might mean to you?

I know that most folks find death frightening because it’s the unknown. My father, who believed in God and heaven, was very scared the day before he died. He had really turned his life around during the last 30 years of his life. He made amends for all the shit he had done while drinking (and not drinking). He had been an avid churchgoer and a true believer, but seeing him scared also scared me. Thankfully, on the day he died, Dad saw some of his loved ones–people that had already died–and seemed to find some peace and joy in that. I can only hope that they helped him get to where he needed to be.

Is it scary to think about my own death? Absolutely. Yet I think I’m more scared for my son. I want him to grow older with as much support as I can give him, whether that be emotional or financial support. And losing your mom at any age is a mind fuck. So I’d rather that not happen for a while, but I also know that he’s going to be such a fantastic man, even if I’m not around. Hell, he already is.

Funny enough, the day my week off began, my little family and I had to have a chat about how my son wanted to be notified when his father dies. This discussion began with me calling my son on a Friday evening. He was at his boyfriend’s house and I had a question for him. After we got off the phone, he texted me to say he legitimately thought I was calling to say his father was dead.

Well, shit.

Later, our family sat down and talked about how our son wanted to be notified if he’s away at college and his father dies. “Text me,” he said. Of course, I was appalled. He went on to say that he wants to be texted then immediately called, because then he’d be able to see on his screen that text before we say anything to one another. He’d rather read it then hear it?

I’m…mulling this over. What would I say then? “Pop is dead” or “I have some bad news” or a skull emoji?

But the best part of that conversation was my husband saying, “Boy, how many families have talks like this?” Our son said it was probably more than we thought, but I said, “I wish every family would have conversations like this.”

For the rest of my week off, I listened to death doula podcasts, co-facilitated my first bereavement group, visited my hospice patient/friend, gathered more titles of both novels and non-fiction books related to end of life, attended a regular meeting of the Funeral Consumer Alliance board I’m a member of, and visited the Rest in Peace Museum in Island Falls.

The day I visited this museum was the 8th anniversary of my brother’s death. Typically this is not a good day for me. But I started the day in a really good mood. I was driving 90 minutes to experience something new, which is what I try to do every July 23rd. My brother is no longer able to experience life on this plane, so I try to live it for him. And I know he’d love the Rest in Peace Museum with its tuberculosis caskets, real skeletons and the wide variety of embalming tools from the early 20th century.

Once I left the museum, however, my mood started to decline. The closer I got to home, the worse I felt. I had a good plan for the day, which included sushi with my husband and son and then “family time” due to my son’s request. He wanted us to watch a movie together or play a game and just make sure we spent the entire evening together. This all sounded great and honestly, it was. I just had a few hours where I was feeling how big that hole in my soul or psyche is. The loss of my brother will always leave shadows throughout my life until I, too, leave this planet.

But until that day is here, I will celebrate and talk about my big brother, Phil. This week I was fortunate enough to introduce my son to one of Phil’s best friends, Pat, who shared more stories about my brother that I didn’t know or had forgotten. It was such a gift to all of us.

So, my friends, get out that glass and toast your family and friends that have died. Say their names, tell their stories and then make a plan for your own death. Don’t let your family try to figure out what you want after you’re already dead. And if you’re not sure where to start, shoot me a message.

Hugs to you all. ❤

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A Nearly Perfect Day

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. ❤

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Suffocated by Grief

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!).

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I Want to Live Well

I’ve been thinking about my career lately, and what do I want to do with it for my last decade of work. (Or what I hope is the last decade of work. I really, REALLY do not want to work full time until I’m 70.) I’ve been a librarian for over 27 years. I’ve worked in an academic library as a cataloger in a tenure track position, a circulation librarian at a public library, helped form an all volunteer library in my town, was an Assistant Director and Director of public libraries (both positions included cataloging, teen services, programming, collection development and more), and now head of a department in a large (for Maine) library. I’ve been on the executive board of my state professional library organization in different capacities over the years, am on the New England professional organization board, have been on committees throughout my state where I’ve had the great fortune of working with school librarians, public librarians of all sorts, teachers and academic librarians. I’ve worked with community members and town government officials and have had the immense privilege to receive the Maine Library Advocate of the Year award a few years ago.

As my term on my state’s professional library organization board comes to an end next month, I had decided to throw my hat in the ring for a different position on the New England board. But after rolling it around in my brain for a few days, I withdrew my nomination with the caveat that at least two people were already running. (It’s good to have choices, no?) My work life has been so stressful these past few months. My library is part of a new consortium and we’ve been migrating to a new automated library system. Not only are we all learning something new, but there are bugs and weirdness and training the patrons to use the new catalog. Oh, and the bugs. Did I mention those? Weekly meetings to try and fix some of the weird things happening in the system and agreeing with other libraries on rules and procedures and language. It’s…fun, honestly. But also headache-inducing. So besides the meetings for the system, there are internal meetings to make sure we know what we’re doing and supervising staff and dealing with patrons and the many, many difficulties some of our patrons are facing in their daily lives. And of course, now that Trump has frozen federal funding, the stress and tension is even worse. That’s my daily work load, but add the professional organization meetings on top of it, and the state committee I’m on, then you start to feel like it’s…a lot.

When I won the Library Advocate of the Year Award, I remember sitting with my friend, Jon, and saying, “Shit. Is this the end?” He is incredibly kind and said I would definitely be up at the podium again one day, but I’m not so sure and I think I’m ok with that. Obviously, librarians do not become librarians to gain attention or kudos. Usually attention is the last thing we want, but gratitude is always appreciated and often we get it on a daily basis from grateful library users. I mean, we need that since typically our paychecks do not reflect how important we seem to be to so many people.

I digress!

I think for my last decade of librarianship, I’d like to stay connected to these professional organizations, maybe be on a committee or two. I’d love to go to a few conferences I’ve never been to, meet new people in my field, learn something new. But I also want to see that next generation of librarian warriors come into the field. I’d love to mentor them if they need me, but also be able to watch them grow and open any doors for them if I’m able. It’s not easy for me to step back. I do love being in the throng of things, knowing so many people in my field, constantly being in awe of them. But I can still admire folks from afar and cheer from the sidelines, right?

Now that my son is going off to college soon, I want to think about my own future that is apart from my career. Hopefully I can take a death doula course this fall. I’d love to take a few workshops on memoir writing. My letters and phone calls to both my local representatives in the Maine House and Senate and my Senators and Rep to the Congress will also continue with the occasional protest of our current administration’s policies. My volunteer work with hospice will most definitely continue. I just started training to walk/jog a marathon. I’m also leaning into what my husband needs and wants for the last years of his life. If I have a decent work/life balance, caregiving might not seem so difficult. Maybe.

And my friends. Oh, man, my friends. Look, I have a very small family now. The family I created along with my sister, niece, great nephews, great niece, stepmom and the few cousins I like, are people whom I love and love having in my life. But my friends? Those people inject so much happiness into me by just being with them! I’d love to have more time with many of them, but our lives are busy and I know that’s not always possible. I hope to carve out a little more time for my lovely, wide variety of friends, too. Although we could go to protests together and that would combine a few of my passions into one delicious day. 🙂 Or travel together! Hell, I want travel to a larger protest with a caravan of my friends!

Everything I mentioned is how I want my life to be. Having some kind of balance between my work and passions and friends and family is a good life, it’s a way to “live well.” (I just read “The Art of Dying Well” by Katy Butler and part of dying well is really living well, too.)

So tell me, what are your plans for the future? Are you in a place in your career where you’re ready to dive deeper or step back? If you’re no longer working, what do you want to do with the rest of your life? What does living well mean to you?

I’d love to hear more about what you want from your life, friends. It’s a tremendously crazy world we are currently in, and our future may not be what we intend (no matter who is President). But I still want to hear what you hope for. I really do.

I’m here to listen.

Hugs to you. ❤

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Moving Forward

I rarely write about good things happening in my life. It’s not that they don’t happen, but they are typically what some would call “small.” For instance, I go to the gym and I consider it successful if I’m able to not only use all the machines I want to, but to slightly increase the weight or reps I do. Or I have a productive day at work with little drama AND I reach 10,000 steps on the same day. Or I get to spend quality time with my little family and it doesn’t end in anyone arguing.

Those are my “good things.” But as of this past week, I feel like my bucket runneth over! After over a year of not working and having both mental and physical tests conducted and paperwork filled out by the truckload, my husband was granted disability by the Social Security Administration due to his declining health. It’s a weird thing to get “congratulations” from people about it, yet it was the perfect thing to say! I might not need to sell my blood plasma anymore. Wal might not need to go to the food bank each week. I say “might” because bills still need to be paid and budgets worked out, but all in all we’ll be in a better place than we’ve been. Well…financially it’ll be a better place. And honestly, mentally my husband is in a MUCH better place. He’s feeling like he’s contributing to the family and not being a burden. It’s not that he was a burden but…it’s hard. There are days I come home and I just want to burn it down because there are dishes in the sink, poop in the cat box, mail in the mailbox and nothing for dinner. I’m tired and sometimes cranky, but I try to shut it down and just putter around the house and clean up the messes. Typically I know that if that’s what I’m looking at when I come home, then Wal had a bad day—either a lot of pain due to diabetes and neuropathy, or little energy because his heart is not pumping the way it should, or he’s horribly depressed because of his health situation. So I dig deep to find that empathy inside me and tend to whatever he might need.

As I said in my last post, my son will be attending a local university, the University of Maine in Orono. We made his confirmation and housing deposit on the day we found out about Wally’s disability. It’s time to get the kid ready to fly the coop and get his parents ready to live in an empty nest.

With two of our major life-changing events finally beginning, I feel like I am able work on me again. I really, really want to run or walk a marathon. I don’t think running one is really in the cards for me, so I’m starting to research both the walk/run method, and the power walking method. I want a physical goal to train for again. I want to feel particularly strong and proud of myself again. I mean…I’d love to lose 10 pounds in there, too, but Jesus, that also doesn’t seem to be in the cards! Being physically fit and healthy is what the goal should really be, right?

Sure. Yup. Right.

Anywho! I went out today and took a 4-mile walk with one little bout of running—only because it was snowing so hard into my face that it was painful. Although it was snowing, then blowing, then raining and finally ending with sleeting, I managed to mostly enjoy my walk. No dogs came out to try and attack me (that was two weeks ago), very few cars, just me and a bunch of birds that sounded particularly pissed off about the snow. I might be projecting, but they really did sound angry.

I got home, my hair partially frozen, my coat, hat, mittens and hoodie all soaked. And I felt…fantastic. Proud. Happy.

I’m enjoying days like this since they seem to be few and far between. Who knows, maybe there’ll be more days like this in the future.

I hope you’ve enjoyed your day, friends. With everything the world is facing right now, let’s keep putting one foot in front of the other, ok? ❤

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Shelter in Place

Recently, my teenage son suffered a mental health crisis. He’s had a few mental health challenges over the past 3 years, but this one was the scariest. You don’t need to know the details, but I’ll say that I rushed home when his friends texted me to say something was wrong. Once home, I hugged my child, talked with him, held his hand, just threw my love at him because I wasn’t sure what else to do. Once the situation felt like it was under control and in a better place, I immediately deactivated my Facebook account.

It was a weird reaction, but I wanted to create a bubble around my little family right then, and getting away from social media was the only way I knew how. I didn’t want to talk with anyone or listen to anyone else. That evening I didn’t care about your favorite book you wanted everyone to know about, see the sweet photos of your grandchild or even learn how the President had fired more federal workers with no cause. That night, it was all noise to me and I needed to shut it all down. I just wanted to protect my kid.

Two days later, my son was tremendously better, yet my husband and I were left broken. Worrying about your kid’s welfare is par for the course as a parent, but when their mental health appears fragile, you’re continuously walking on eggshells and faking good cheer, all while expecting the worst to happen.

He was late coming home from work that week, and I found myself pacing and just texting him once because I didn’t want to seem too freaked out. (He ended up working late and his text to me wasn’t sent.) Each evening I asked him how his day went and searched his face for any little thing that might show more distress than usual.

And then…the college rejections started to roll in.

My son is a dreamer. He has huge plans and wants to be part of the governing body of this country in the near future. He wanted to attend a “fancy” college to go along with those dreams. Unfortunately, every single one of them has said “no thanks.” On one night, he received two flat out rejections and one waitlist. My boy’s grief and sorrow was so palpable that night. He said he felt “defeated.” And each day after that he’s receivd another rejection. There’s only one dream school left, and we expect that rejection later this week. I’ve been feeling that loss right alongside my boy, but also fear that he’ll slip back into that mental health crisis we just survived.

Yesterday, the boy and I went for a walk and we started to talk about his safety school. Here’s the thing: a safety school is great. You know you’re going to college no matter what. But once my kid was denied from attending those other schools, he realized how much he wanted to go somewhere that was NOT his safety school. We talked about his options and the fact that he has an acceptance at a different school out of state, but again, it’s not a school he really wanted to go to. He started to get angry and frustrated and I knew I needed to just back off. When we got back home, he started researching the shit out of his safety school and what classes he could take. He started asking me questions, “What are semester hours and credit hours? How many credits per class? What’s the gen ed requirement?” He made a document to understand what he needed to take for classes to graduate and what he needed for the general education classes, as well as what the college classes he’s already taken could go towards the requirements. He was on a roll, so my husband and I ran errands while the kid figured things out.

While we were running errands, at one point I said I just wanted to hurry and get back home. “Oh thank God,” my husband replied. We were both feeling anxious being away from our son. Our level of distress has ratcheted up to a whole new level this month.

But when we got home? The kid was pumped! He couldn’t stop talking about the classes he couldn’t wait to take and how he thinks he knows what he wants as a minor and actually planned out all of his classes for the next 4 years. Seriously. The next 4 years.

I was so relieved. I couldn’t keep the smile off my face! Although having my son go to the local university is not what I had hoped for him, I know he’ll still have many opportunities to grow and excel—because that’s who he is.

The private, “fancy” colleges who did not accept my son as a student, will be missing out on one incredible guy. A boy that listens to history and philosophy essays to relax, a young man who wrote a bill about immigration this week for fun, a person that watches Youtube videos about historical events because he wants to learn.

Yesterday, I told my son that although I know he’ll get a good education wherever he goes, I had hoped he wouldn’t be too close to home so he could escape the drama of his father’s ill health. “Mom,” he says. “I could be in California and wouldn’t be able to escape that. It’s just how it is.”

See? He’s such a smart boy. With a big heart.

And maybe I’m a little happy to have him less than an hour away, so when I really, really need to see and hug my son, I can do that.

Well…if he’s not too busy changing the world. ❤