life

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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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Shame

I write this blog because it helps me sort out my feelings, my thoughts about my life, and to share my experiences with some folks who either can relate or those who care about me. I do not ask for anything but a few minutes of your time if you are so inclined. But my last post brought gifts from some of you. You read my piece and felt for me and my family’s current situation. Your generosity and kindness was and is appreciated, and I am honored to call many of you my friends. I know you did what you did because you love me and the thought of me hurting in any way made you want to help. And I love you for it. I truly do.

But to be honest? I felt tremendously embarrassed and ashamed afterwards. I didn’t share to “get stuff.” I shared just to show this new thing I was experiencing and how frustrating (and humbling) it can be to eat from a food pantry. After the influx of gifts, I was kind of a mess for a few days until I had therapy. When I explained my dilemma to my therapist, she said something pretty dang profound. “Sometimes, Holly, it is our job to receive.”

*mic drop*

That one sentence changed my perspective on these gifts. I ended up using two gift cards for a trip my son and I had planned from last year. (We drove to Washington, D.C. to look at colleges and we needed snacks, friends.) I did refuse a few offers when I was able to, and others? I put some of the gifts aside for a little later when I know we’ll be more desperate than now.

Do you know what’s really disturbing about all of this? When my son and I went to D.C., we stayed with some old friends, who have become part of my family. My dear friend, a woman I’ve known for 30 years, had asked me about these cassava flour brownies that I made. I said that I got the flour from someone, but I could not say the words out loud, “I got it from the food pantry.” (Which, btw, that’s pretty great to get anything gluten-free from a food bank, and this was from our local high school’s food pantry.) I know for a fact that she would never judge me. Not for a second. Yet I was too ashamed and embarrassed to say that I got it from a food pantry. That shame is so deeply ingrained into me. I just want to starting yelling, “I have a good job, a fucking master’s degree, so don’t look down on me!”

But who is actually turning their nose up at me? Is it you? I don’t think so.

I think it’s me.

I shouldn’t be in this situation. I should be helping people that need an extra hand.

I should be you.

But I’m not. And I’m angry about it.

Then today, I brought this walker up from the basement. When my husband was on a respirator and in a coma back in 2020, this was given to him once he was able to leave the hospital. It was necessary then, so we kept it, hoping we wouldn’t need it for years to come. This morning, my husband’s knee was swollen, his neuropathic feet were hurting, and he was having problems standing up from his living room chair. Before I left for work, he asked me to get the walker from the basement. So I did.

On the drive to work, I couldn’t take a deep breath. I knew I was having an anxiety attack. I was thinking about my husband, my son was home sick, I was missing some friends I haven’t been able to talk to, I was feeling alone and scared…but I just needed to get to work. Once there, I pretended all was good until I couldn’t any more. I asked a colleague if they ever had anxiety attacks (I was pretty sure they had) and asked what they did. They sometimes would just go into the bookstacks and center themselves. So before we opened the library, I went to a section of the stacks, sat on the floor, and sobbed. I couldn’t think. I couldn’t speak. I just sobbed and rocked myself. After a few minutes I was able to stand up and go back to work. A different colleague checked on me and we talked for a few minutes and they let me vent and cry some more, and that was the end of it.

When I was a Trevor Project volunteer, I helped many teens get through anxiety or panic attacks. Often I used the 54321 grounding exercise (name 5 things you see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and 1 thing you can taste–the taste thing is always odd). But while my brain is freaking out, I could not name anything I was seeing because everything was a massive blur. Hell, I couldn’t remember the order of seeing, touching, hearing, etc. But today I learned that sometimes being alone to cry, drinking water, taking a brief walk or finding a place nearby to get a good snack, are all good things to help calm me down to a place where I can function again.

Did I feel a bit embarrassed and ashamed for having this mini breakdown? Oh yeah. I see people every day who have no home, who keep every possession they have in a shopping cart, who only eat what is given to them. And I’m crying over a husband who can’t work and a life that I wasn’t expecting?

Well…yes. I am. Do I wish I could suck it up and just get on with whatever life I have? Yes, yes I do. And somedays I do a great job at it.

But today wasn’t one of those days.

You know what, though? Tomorrow is a new day. So there’s always hope that I’ll function tomorrow, that I’ll be able to get up on time, exercise, eat well, and smile more often than not.

That’s my goal.

How about you? Are you ok? No matter what I’m going through, I’m still here to listen. It’s the least I can do for you, like you’ve done for me. ❤