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It’s Not Really About the Food

Last night I argued with my child over food. He didn’t talk to me the rest of the night, and I went to bed early without talking to anyone. I hated myself.

I was a chubby kid. I remember my first food binge. It was ice cream and no one was home. I was seven years old.

I became a morbidly obese teenager. I ate my feelings every fucking night.

In college, I lost some weight. I discovered walking and weight lifting. I was back to chubby. By my junior year, I was a Creative Writing major and I poured all of my childhood trauma and anger into stories and poetry. Did I still eat my feelings? Oh yeah, but not to the same extent.

Just after graduating from college, though, I became bulimic. Interestingly enough, my first puking session was ice cream. I ending up losing another 30 pounds or so. My dad was worried about me. I remember how he came to the video store I was working at and he was so worried I’d die from losing so much weight. This was not going to happen. I still ate a lot and just puked enough to maintain the initial weight loss. But I know it wasn’t as simple as that. I was fucked up and Dad was worried.

I went off to graduate school, still throwing up, just not as often. Then my teeth started to hurt and I had to go to the dentist at the age of 23. I hadn’t gone since I was four years old. We didn’t have the money to go when we were kids and the one time we did go, I apparently had a horrible experience. I have no memory of it, but I broke down in tears when I had to see this dentist while I was in grad school. He’s the one who told me I had a bad experience. He had seen this before. He was kindest, gentlest man and dentist. He pulled a tooth and was good to me. I stopped throwing up on purpose that day. I was too freaked to lose my teeth.

And now? I continue to struggle with my relationship with food and my weight. It sometimes comes up in therapy. Some days I just don’t care about any of it because life is too exhausting on other levels.

But now my son has gained a lot of weight. I don’t know what to do.

My beautiful boy has been on antidepressants for several years now. I think it has saved his life and I’m so, so grateful for our beloved Dr. Lauer for getting him on the right path. Unfortunately, those meds often cause weight gain. For my boy, his hunger was insatiable. Being a growing boy, his hunger could be pretty intense as it was, but this? This was bananas. Along with that, though, was his love of gaming and hatred of exercise. When you combine it all, it leads to weight gain.

I’ve worried about his physical health, although with a battery of tests he needed to do this past week, he seems to be good–except his weight is in the morbidly obese category. Just like his mom’s was at the same exact age.

Last night, we ended up fighting about a pizza, which was really a misunderstanding. But none of that was super clear last night, and I was too in my head to fix it. So this morning, I got up before 7 because my body wouldn’t let me sleep. I had coffee and just felt too unsettled to relax and read. So I started cooking. Not eating. Just cooking. I made healthy breakfast cookies, yeast rolls and sweet potato black bean chili. I listened to an audiobook while mixing and chopping and doing dishes. I felt calm but determined. I needed to fix this.

Being a 17-year-old kid, my son didn’t awake until nearly 11. I had been up for over 4 hours by then. I had a little plate with breakfast cookies on it, waiting for him, and I poured him a glass of milk. He was so happy by the cookies–it’s something I used to make a lot when he was little. I apologized to him and said we needed to talk about it. I started to cry and told him I never want him to have the fucked up relationship with food or his body that I do. I just want him to be ok and healthy and live a long, beautiful life. He hugged me and we talked about what happened. He doesn’t have a bad self-image in the least. That makes me incredibly happy. He does eat his feelings sometimes, but doesn’t seem to have that toxic relationship with food that I do.

Do I want him to lose weight? Yes. That’s an emphatic yes. I know you can be healthy and be large. But when you’re already 6’8″, you don’t fit in a lot of clothes or cars or anywhere. Being heavier increases those challenges. He’s already a broke, queer giant on antidepressants. He doesn’t need anymore challenges.

If he doesn’t lose any weight? Oh well. I’ll get over it. If my kid is healthy and happy and can find clothes that fit, then I’m happy, too.

My son is aware of my various eating disorders and he’s seen photos of me as a teen. Before, he only knew the mom who runs and eats well (most of the time). He didn’t know the person I was before and really still am. Once I showed him the photos, he understood a bit more. Today he is more aware of why his weight gain has triggered this manic urge to fill the house with salads and fruit and severely limit any kind of “junk” or processed foods. And it’s because I told him. I was honest with him.

I don’t know how long I can keep up the good meals and stores of fruit and vegetables in the house. No matter what anyone says, eating well can be expensive. But I’ve decided that it doesn’t matter right now. If I have to charge a load of groceries on my credit card, I’ll do it. (Ok, I already did.) The good meals will be harder since that shit takes time and energy that I don’t seem to have lately. But I’ll try. And I’ll get the kid to help and the husband to help when he’s able.

We’re gonna do this, damn it. This kid will be a part of changing this country for the better. I completely believe that. So I’m going to shove my own eating issues down deep and just try to feed my kid in the healthiest way I can. In this case, food really is fuel. I’m gonna fuel my boy up so he can help govern this country in the near future. He’ll be part of the generation that shows the world that we really are a country of people with differing beliefs and genders and colors and wants and needs, but we will help one another RISE UP, not be pushed down.

I’m off to meal plan for the week. It kinda feels like the beginning of a revolution. ❤

Stay well, friends.

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Be Patient

My husband applied for disability in March of 2024. Between his congestive heart failure and diabetes, he is no longer able to work. Throw in depression, and he’s barely surviving. As am I.

But, tomorrow, NINE MONTHS after he applied for said disability, he will finally have the physical required by Social Security to determine if he is, in fact, eligible for disability payments. That he has paid in for. Let’s be clear about that. He has been paying into social security since he started working as a teen. But the SS Administration still has to determine if he’s sick enough–not his doctors who actually encouraged him to do this two years ago–but a family nurse practitioner the government has hired.

Do I have hope that he’ll finally be approved? Of course, but very very little. It’s almost a given that you get denied disability on the first run. My brother was denied his first time. Why? No fucking clue. His heart no longer worked. Period. But was still denied. So yeah, although there’s a smidgen of hope that Wal will get disability soon, we’re still going through this process expecting to be denied then starting the whole damn process over again.

You know, I looked at my blog post from a year ago and read how I had hoped Wal wouldn’t have to stop working that year. Little did I know that he would be unable to work just over a month after I wrote that post. I wonder what I’ll know a year from now. Will I still be selling my blood plasma? Will Wal still go to the food bank every Tuesday? Will his health be about the same or worse?

I’m almost glad I don’t have a crystal ball.

Let’s just keep chugging along, shall we? Let’s just pretend that it’ll all work out.

Or I guess we can hope, right? Sometimes I’m not sure I know the difference between hoping and pretending, but tonight….

Tonight, we’ll call it hope.

❤

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It begins again…

Like every year, 2024 was filled with many losses.

My husband stopped working in February. We’ve suffered many bouts of unemployment over the years, but this one will never be overcome. Even, someday, when he gets the disability he both deserves and has a right to, that money will never cover our losses, But it will give us another start and we’ll at least be able to keep moving forward. One day.

With Walter’s sickness, comes the loss of the life we used to have. Taking walks or short hikes is something we used to do together–well…when I made him. 🙂 But it was still possible. Now any hiking is completely out of the picture. Short walks might add up to 1/4 of a mile, but those are extremely rare. Even shopping trips are usually unreachable. Of course, with the loss of that particular life, a new one has emerged. It’s not one that makes me happy, but we do what we have to, right? Caregiving tasks are now part of my life and fortunately they’re not daily right now. I’m sure some folks would be much more grateful than I am, to be able to help care for my spouse when needed. I’m glad he’s not worse than he is, but sometimes gratitude is tough to come by.

And of course, along with those losses, comes the losing of our friends and family.

Beverly, Marcia, Lois, Adam, Virginia, Kim, Alden, Judy, Sal.

Each person meant something to me, some more than others. A few people were library patrons that became friends. Some were family and some were chosen family. They all had three things in common: they were all loved my me, they were all loved by others, and they all felt loved.

I think the one thing we seem to want more than anything is to be loved and feel loved. Don’t you agree?

Just so you know that 2024 was not completely horrendous, it was also filled with fun, adventures and beauty. Here a list in no particular order:

Trip to Belize with 4 of my favorite women (ok that one is first for a reason!), Washington DC visit with son and spent time with dear friends in Maryland, Watching my son play football for the first time, Visiting the Auschwitz Exhibit in Boston with my sister and son, Joined a gym, Having the author Katherine Center like my review of her novel, Meeting authors Chris Van Dusen, Amanda Peters and Steven Rowley, Hearing my son’s excitement about the colleges he’s applied to, Listening to and watching Louise Penny (in person) discuss her work, Taking walks and having meals with friends and family, Reading some extraordinary novels, Voted onto the Funeral Consumers Alliance of Maine board, Continuing to be a hospice volunteer and hang out with my favorite older couple each Sunday, Being able to live in a heated and cooled home each day.

And writing this blog. It fulfills something in me that I’m not always aware I need. But I do. Especially now.

Thanks for hanging out with me tonight. I always have hope that the next year will be better. I’m not having a lot of that hope right now for 2025, but I *am* excited to see what adventures my child will embark on. I think I just need to concentrate on him and not worry about the rest.

Love to you all. Happy New Year.

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Gather All Around

This holiday season, I’m truly trying to enjoy all of the little moments and carve out time to spend with those that I love. I had the great fortune to spend an evening with three of my best friends recently. We had drinks, saw a play, ate snacks at one of my friend’s houses and reconnected after not being in the same room for nearly a year.

Last weekend, I wrapped and baked and cleaned and prepped for most of my immediate family to come to my house. I did it all beforehand so I could just drink, eat and be merry WITH them, instead of scurrying around the house doing whatever needed to be done. Next year I think we should scale it back even more and do even less beforehand.

And for the past week, my husband, son and I, have spent snippets of time together when we can. We had a movie night on Friday, dinner together tonight, and will spend Christmas Eve night and Christmas Day together. The guys are having an entire day together tomorrow while I’m at work, and I hope to snag the kid for an afternoon next weekend with just the two of us.

The three of us have become very aware that our everyday lives together is running short. We still argue and irritate one another, but we also forgive one another quicker than before. We apologize soon after whatever blowout we might have had. We don’t want there to be any bad feelings between us, even for an evening. I’m grateful for that.

My husband recently had chest pain while he was sleeping. It woke him up, but he ended up rolling over and going back to sleep. He hasn’t talked much about it, but to tell me it happened. And…I almost felt good that it happened to him. It gave me hope that he will get to have the death he’s always wanted–dying in his sleep. Yet at the same time, I felt this incredible rush of fear and grief, with a dash of anger. (Emotions are just wacky things, aren’t they?)

As prepared I’m trying to make myself, it’ll be scary when Wal dies (unless I die first). Especially if he does die in the night. A sudden death, even if expected, is still…unexpected. When my brother died, it was still shocking in a way. We knew it would happen and probably soon, but why now? He always came home from the hospital before, so why is this time different? The only way for the rest of us to survive anticipatory grief is to not fully accept reality.

But tonight, I’m not going to think about that. I’m going to finish reading my slightly steamy romance novel by the tv fireplace, have a glass of wine, and listen to the occasional laughter of my family in the other room. I’m going to enjoy these moments while they still exist.

Tell your friends and family you love them, folks. Let’s not have regrets if we can help it. ❤

Happy Holidays friends. I love you!

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Running Again?

Have you had a bad week? Or maybe just a really weird one?

Things have been bonkers at work. My kid had a rough week, many of my colleagues had horrible sicknesses or were dealing with bad news, and I was in a pretty bad mood throughout much of it. There just seemed to be something in the air, bad vibes everywhere. It was really cold in Maine this past week, with a shot of snow and ice, and I know that was to blame for some of the icky feelings and the general grumpiness. Plus…the holidays bring about a cadre of emotions and memories and sometimes it’s difficult to manage all of it.

I finished three books this week, all relating to grief and death. The Year of Magical Thinking by Joan Didion was beautiful. I don’t think I’ve ever read Didion before, but I’ll seek out more of her work now. Her language is lyrical and how she structured this short memoir about her life and her husband’s death was poetical. But what I loved most of all was how human she was and is. How many of her reactions to her husband’s sudden death, is how many of us have felt or thought after someone we have loved for a long time dies. How we look back and think that our loved one knew more about their upcoming death than they ever led on. Or we think they did. Weren’t they giving us clues all along? Why didn’t we listen?

What to Do When I’m Gone : a mother’s wisdom to her daughter by Suzy Hopkins & Hallie Bateman is a graphic novel I finished in an afternoon. It starts out with Day 1, the day after Suzy will have died. She tells her daughter what she needs to do that day–make fajitas. (You’ll know why when you read it.) It continues on for 144 pages, occasionally skipping hundreds of days and gives bits of advice like inviting people over sometimes when you feel lonely and make chili for them. Go outside. Parenting advice. Just some things your daughter might need to or want to hear.

I loved this book so much. It got me missing my mom for sure. I always miss her more during Christmas, since this was also one of her favorite times of year.

Well…I think it was? Shit. I’m not even sure. (Maybe my sister will know?) I know she always made it TREMENDOUSLY special for us kids. She loved giving gifts, making candies, cooking lasagna–or she seemed to. I know she loved to make us happy. That I am absolutely sure about.

I started thinking about the questions I never asked my mom, some I thought about asking when she was alive, but figured she wouldn’t answer or maybe not tell me the truth. Like, what did she see in the men she loved? Most were alcoholics, a few were sweet or kind when not drinking. Was that it or something else about them?

She worked in various types of kitchens, with the last being in a minimum security prison. She seemed to love it. Why exactly? Was she scared when she first started? The big question, though, is when she left Dad. Looking back on it as an adult, I think it was really friggin’ brave of her. Did she plan it all out? Did her mom help her? Why didn’t she leave earlier? These are questions I’ll never have answered, but I wish I had had the courage to ask her some of them when she alive and before dementia set it.

With all of those questions swimming in my brain, I went for a run/walk today, something I tried a week or so ago, just to attempt running once more. It doesn’t bring me as much joy as it used to, but today it felt therapeutic and cleansing and energizing.

It snowed this morning, but the temps at noon were in the 30s. After helping shovel the steps, clear off the cars, and stick around outside to make sure my husband could snow blow the driveway with the tractor without him keeling over, I just had to get out there on the road. I put my trail runners on, yanked on my Wonder Woman hat, and off I went. Lately I just start walking and if I run at all, that’s great, but not necessary. Today, however, I got out there intending to run. My body feels heavy and I just can’t keep up any decent pace for long, so I did the old “run 3 telephone lengths, walk 3 telephone lengths” trick. I mixed it up a bit and ran more than I walked, which I consider a huge win.

While on my run, thoughts about everything I wanted to ask Mom turned to my surroundings. Snow covered the fields and bent over the smaller trees. I was running on the road Mom grew up on. Nearly every house on this road wasn’t here when she was a little girl, and the home she grew up in is gone. I know she walked on this same road, but it was dirt back then. She didn’t do it for exercise, but for necessity. I know where she and her sister, Bonnie, had to walk to to get to the bus for high school. It was actually just over a mile from her home (and my home now). She used to say she had to walk a mile just to get to the bus, and she wasn’t wrong!

This week I’m hoping I can find a little peace. I plan to make raisin-filled cookies soon, Mom’s recipe and my absolute favorite cookie she ever made. Like my friend Trish when she makes her Mom’s chex mix, I’ll feel a connection to my mom while I make (and eat) them. I know I’ll be thinking of my dad this week, too, since December 12th is the day he stopped drinking in 1987. I used to send him cards or gifts or called him up every 12/12 to tell him how much it meant to me for him to regain his life while I was still young and able to discover what a sweet man he really was.

And, of course, I always think of my brother. That’s just a given, friends. ❤

I hope you will also find some peace and joy this week. I’m really hoping I’ll see some kindness out there. I think we all need it.

Hugs to you all.

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All the Lies and Wishes

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. ❤

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Frozen

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. ❤

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Dysfunction Reports

If you’ve ever had to apply for disability for a physical ailment or diagnosis (Social Security Disability Insurance–SSDI), you know that you need to fill out a shit ton of paperwork. Oddly, I typically love doing paperwork. I love surveys and questionnaires and I’ve helped my husband fill out many kinds of paperwork throughout our entire marriage. It brings me a little joy.

But the function reports you fill out for Social Security are so…depressing. The questions asked are to show the government what you *can* do, but also what you are no longer able to do. As we went through the list of questions, my mood dipped lower and lower and lower. He talked about how things have changed. He used to make dinner on a regular basis, and still does occasionally, but now he has to do it sitting down on his walker. Often he can’t stand for more than 5 minutes, and if you’re boiling or frying something, it would be silly (and dangerous) to sit in another room if you can’t see or hear what’s happening on the stove.

On the form, there’s a question that asks you to describe your typical day. As Wal described his day, and the amount of dozing and napping and sleeping that he does, I just got really sad. Between his heart not working well, his chronic pain and the medications he has to take to keep living, he is *literally* sleeping much of his life away.

Then we got to the question about what he can no longer do. He listed off a bunch of things, first the work-related activities, then many of the tasks at home he can’t do any longer. This is when I cried just a bit, and he started to sigh more.

As you age, you expect things to change. You expect to not be able to physically accomplish what you once did. But when you’re ill, you realize that you can’t do what you did just last year. Or even 6 months ago. I don’t feel like I’m been particularly naive about Wal’s sickness, but crikey. Filling out these forms and seeing in black and white how far he’s deteriorated, was still a surprise.

Yet when the opportunity came up to visit with a dear friend and for Wal to meet my friend’s family for the first time (and go to the coast!), he was up for the challenge. I drove us to Bar Harbor, and I loved how he kept the window down and did what I typically do when we go to the coast. He inhaled deeply as we neared the ocean and exclaimed how good it smelled. The salty sea air always rejuvenates us!

We met our friends at Acadia National Park and I rode up to Cadillac Mountain with them as Wal drove to the restaurant we would meet at for dinner. (Walking at all on Cadillac was not something he felt he could do.) I had a lovely time with my sweet friends, then we all met at the restaurant where we ate, drank, talked and had a good time. It felt like years had been rewound and my husband was more like he used to be. Not the chronically ill man who is in near constant pain, who gasps for breath when he naps, who *has* to nap, whose hand tremors often make him have to eat with his left hand instead of his usual right. He was just…Wally.

After we left our friends, we did a quick stop at the grocery store to pick our boy up something for dinner. But as we made our way to the check out, it seemed like Wal’s energy was draining and his pain was ratcheting up. The way he walked started to change, the grimace formed on his face, and he was back to the man who can no longer work, the man who doesn’t eat much anymore, the man who can no longer take short walks with his wife. By the time we arrived home 90 minutes later, it was an effort for him to get out of the car. It was time to take his medications and hope his pain would not be so bad through the night so he could sleep.

Then it was back to me watching his chest to make sure he was still breathing, back to counting out his meds and placing them into the pill caddy, and back to helping him in the shower.

But…it was the perfect respite for both of us. He felt like he was living again, and I got to remember what life used to be like. Our days may not be like they used to be, but that one evening gave us our lives back for a little while and it’s made both of us grateful for those fun and sweet moments we still have.

And the kind, kick-ass friends we have in our lives.

Thank you, Jo, Ray & Freddie for a fantastic evening. And thank all of you friends and family who continue to support us by listening to us, loving us, and lending us a hand when we desperately need it.

I feel very, very lucky to have all of you in my life.

*hugging you tight*

❤

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Difficult Conversations

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.”

Maybe a few more years? ❤

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Dragonflies Dancing

Have you ever been on a walk or run or bike ride, and had dragonflies flitting and dancing about your head? It’s truly one of the most glorious experiences.

Photo by Richard Ricciardi

This evening, I was taking a walk to get the rest of my steps in. It was warm but not as humid as earlier in the day. I was listening to a cute romance novel, enjoying the sun on my skin and walking at a steady but not rushed pace. Just enjoying myself.

As I walked along, I saw the occasional dragonfly scooting past me, until I saw at least a dozen dragonflies flitting back and forth, dancing, playing, even watched one flip upside down in mid-air then right it self again. I could not help but gasp with awe and absolute delight! I tried to take a photo, but that wasn’t happening. Instead I took a selfie to show how happy and content I was feeling at that moment.

Seriously. Look at me! I was just feeling and looking good. Almost glowing.

I’m trying to capture these moments, trying to enjoy all the little things life can offer. Something as beautiful as a flight of dragonflies should be celebrated, you know? We won’t always have “big” momentous occasions or activities to acknowledge like vacations, graduations, new homes or jobs. Instead our lives are typically filled with just seconds of glee and wonderment, yet those seconds really do add up. It doesn’t always feel like it, I know. I often feel like I’m swimming in sorrow and grief, and you might, too. Or maybe you just feel overwhelmed with what life has been throwing at you lately. I get it. You know I do.

Try, please try, to find something that lifted you up for a minute this week. Was it that cup of coffee that tasted extra good today? Maybe you had a good hair day one day this week? Saw a cool cloud that looked like a heart? Or maybe it was that text from your friend you hadn’t heard from in a while.

Earlier today I sat on my porch with a smutty book and a glass of peach wine. It was bliss. And I knew it, acknowledged it and heaved a contented sigh.

What about you? What are some moments of delight you’ve experienced lately? If you haven’t experienced any, please let me know. I’m happy to send you cat or dog cuteness videos. Or giraffe videos. Giraffes are the best!

Hugs to you all.