husband’s health

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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. ❤

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Dreams (and Nightmares) Do Come True

It actually happened.

Two weeks ago, I went on vacation with 4 of my favorite humans. To say we had the time of our lives was an understatement. When you laugh so hard each night that you cry and have a belly ache, you know you are surrounded by people that you not only love, but love spending time with.

We traveled to Belize and had the most amazing time. I can truly say it was the best five days of my life. Things at home were not wonderful while I was gone, but I had to keep telling myself that I just needed to let it go. Mostly I did.

Here are some highlights: saw numerous creatures at the Belize Zoo, including spider monkeys (where I cried because I felt like my brother was there, feeling just as excited to be so close to these lovelies); had a beach day where we all swam in the warm water, drank margaritas on the beach, and played cornhole in our bathing suits; went to the Xunantunich Mayan Ruins with a very informed and funny guide, climbed the massive structure and saw lizards and bats along the way; experienced cave tubing; visited a cacao farm and had a hand in making chocolate; swam under the waterfalls; had a massage (thanks, Trish!); ate delicious dishes and fresh fruit each day; heard and saw so many different types of birds that I’ve never seen or heard before; swam in the pool; went for a run; shopped a little; tried to speak Spanish a teensy bit; and drank and laughed each night.

There are hundreds of more photos that I get to look at each day. I did not take a ton (maybe 100), but thanks to my friends, we had over 500 (probably much more) to look at and do what we want with. Many of the ones I haven’t shared are all of us hanging out at the pool on our last full day in Belize. Looking at photos from that afternoon just gives me such good feelings. We were warm and our bellies full and we were enjoying the water and each other’s company. Hell, that was really every day of the vacation.

I know how lucky I am to have been able to travel to another country, to take a vacation, to spend it with my friends. I know how lucky I am to have these friends (and many others) that I have known for most of my life–over 35 years–and still love them and call them my family. They bring me joy and so much damn laughter.

I knew that when I came back from this dream vacation, I would need to hold onto the memories because life at home was and is hard. I cried the day before we left Belize. I knew that my life wasn’t going to feel this carefree and fun for a very long time.

My husband was not able to work while I was away and is now no longer working at all. Between congestive heart failure and now the neuropathy in his feet due to diabetes, there is no other way around it. Our health insurance ends this month and I will start paying for insurance that isn’t as good through my work, but at least it’s something. We will lose our doctor, our favorite doctor we’ve had for years, because he doesn’t take this new insurance. And now we’ve contracted with a lawyer to help my husband apply for disability. If all goes well, he might be able to receive SSDI (Social Security Disability Insurance)–the thing we’ve been paying for all of our lives–in a year…or two…or three.

We, in short, are all grieving so many things this week.

I’ll be able to look on the bright side of things tomorrow. Or maybe it’ll have to wait another day. Either way, I did have Belize. For that, I will be forever grateful.

Take care of each other, friends. I appreciate you.

Hugs to you all. ❤

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Breaking It Down

In another week, I hope to be hanging with four of my girlfriends in our rented villa in Belize. Sounds absolutely amazing, doesn’t it?!?

I just NEED to get there.

Today my husband and I spent over 4 hours in the emergency room. After three days of high blood pressure and heart palpitations, our doc said it’s best we go to the ER since they can do tests and get results today, compared to doing tests at his office and waiting two days.

But that’s not what happened. When we walked in, we were warned that their computer system was down and no idea when it would be brought back up. We figured we’d stay anyways because they could still do tests…unless you get a medical professional that doesn’t think you need any.

Three hours after we stepped through the doors, my husband is finally seen. Unbelievably, his blood pressure was actually normal at that time. The PA couldn’t see my husband’s records, but knew he had congestive heart failure. He said he might do some tests if he can look into his records. BUT HE COULDN’T, SO WHY BOTHER TO STRING US ALONG?

An hour later, I told my husband we should leave. They were working on discharge papers but weren’t sure how long it would take. I was done. I was angry at the PA, angry at my husband, angry at the world. So we left.

Once we got home, we sat in our driveway and I just cried. I let it all out. I told him how disappointing it is to have to do everything at home (cook, clean, laundry) even though I know he often feels like garbage. But when I get home after a long day and he’s been home, can’t the dishwasher be emptied at least? But I also told him how frustrating dealing with his health is, how we should just pull the pin on this disability thing and he should downgrade to part-time work. We’ll lose our insurance and try to get something in Marketplace we can afford. But it’s all so fucking scary and rage-inducing. We should be in a much better place in our lives, but instead we’re still fucking struggling like we did 25 years ago.

And yet between sobs, I told him I feel guilty of living my life and traveling with my friends, while he stays home, barely living at all. But he told me that he wants me to keep living and traveling, because that’s what I want to do and should keep doing it.

But…our lives include things like this in the shower. (Which, I’m not gonna lie, I hate. I feel like I don’t fit in our shower now, and I feel like the handle is just in my way. Isn’t that the most fucking selfish thing anyone has ever thought?!?) I also ordered husband a cane that should be here this week. It all feels just so…unfair and overwhelming and just plain shitty.

Ten minutes ago I completely melted down by the tremendously overwhelming task of…making my lunch for tomorrow. It’s a salad for fuck’s sake, and I dissolved into a sobbing mess at the thought of trying to cut up chicken to put into it. I alternate between sitting at my kitchen table and typing this, to laying my head down in front of my laptop. It’s really not a pretty sight.

So…I’m listening to ocean waves and trying not to spiral and overthink our future. I’m going to envision the best-case, worst-case and most likely scenario of what the next few years will be. Best-case? My husband’s health stabilizes enough that he can work full-time for now and we keep our insurance. Worst-case scenario? He stops working all together and is denied disability over and over. We not only lose our insurance (and our doctor because he doesn’t take any other insurance now) but must sell our home and move into a small apartment. Or…my husband dies.

Most-likely scenario? I think it’s in between. I am hoping my husband can work part-time. Yes, we’d lose this insurance, but I know we can find something on Marketplace. I think it would be more than what we want to pay (or rather *should* pay), but I’m not sure there’s much we can do about that.

I made Husband promise to not die this week or next week while I’m on vacation. I guess now I just keep on moving forward, right? I know how lucky I am to be able to take this trip with four of my favorite people. Do I wish I wouldn’t have to worry about what was happening at home? Of course. But…I just have to do this. I need a break from my life and I swear, I do know how fortunate I am to get that.

So I’m going to take that break. And I’m going to hope for the best. And when I get home? I’ll keep moving one foot in front of the other and gather forces to try and navigate our current circumstances. We’ll figure it out, right? 

Hugs to all of you. ❤

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Until Your Love Runs Out

“With gratitude, optimism is sustainable.”–Michael J. Fox

I heard Fox say that once in a recent interview. It takes effort for his body not to shake or move due to Parkinson’s Disease, yet he’s still grateful for and optimistic about his life. I immediately found a scrap of paper and wrote this quote down because I knew I’d need it at some point. And now here I am, trying my best to embrace those words.

Your comments, messages, emails, texts and phone calls in response to my last post, was the best explosion of love I have felt in quite some time. I am not only grateful for y’all, but finding others that have been or are currently in the same situation, lightened my stress by just a bit. Thank you. So much!

Because of my blog post, my husband and I had some honest conversations, including his daily fears and what the future will bring. We added to our vision board with our own hopes and also YOUR words of encouragement.

When I asked my son what he wanted on the board, he said to win the Calvin Coolidge Scholarship. This is the one he’s been working really hard on–reading Coolidge’s autobiography, writing 3 essays and 3 short answer questions. I helped him with his resume and he got the two letters of recommendation he needed. The deadline is Thursday, so much of his life will be consumed by this for the next few days. He said, “You know, Mom, I really doubt I’ll get it, but I’m really proud of myself for trying.” I’m so damn proud of him, too. He set a goal and he’s kicking ass trying to achieve it. ❤

We’re feeling some hope this weekend. I was able to buy groceries yesterday and filled the house with healthy foods and now I’m cooking up a storm. I paid most of our bills and with a bit of juggling, should be able to pay the others around their due dates. (I know many of you know this juggling I speak of. We’re basically fucking financial experts, aren’t we?) Today my husband looked at bars for the shower and toilets that are higher than what we have. With help from one of my colleagues, I now have a short list of attorneys we may want to talk to soon about the process of applying for disability, but he’s not at that point quite yet. He has to stop working before he’s even able to apply. I really, really hope that isn’t this year.

But if it is, then we’ll deal with it. Because that’s what we do and what you’d do, too.

For today, though, we’re going to move forward and hope we can continue to keep putting one foot in front of the other. We’re going to listen to this positive potato. (My son gave this to me yesterday as my late Christmas present. I LOVE IT!)

So let’s do our thing, friends. I believe in you, just as much as you believe in me. Let’s keep chugging along until the love runs out.

Hugs for all!

Thank you, One Republic, for letting me borrow and edit your lyrics for my blog post title.

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Reality Check

I’ve been running a lot lately–for me, that is. I ran just over 15 miles each week for the past two weeks. They all felt just so…good. I ran in Springfield, Massachusetts two weeks ago while I was at a conference, and it was so atypical of my runs while traveling. Usually I’m over tired and cranky but desperately want to be outside for a bit and log a few miles. But this time it was just….freeing.

The Lorax at the Dr. Seuss Memorial Sculpture Garden in Springfield, MA.

I am trying to be present in not only my running, but my life. Breaking up with social media has helped me do that. When I run, sometimes I can’t really be where I am or be fully conscious of each step I take because it can be torturous and I just need to finish, damn it! But sometimes I can really enjoy my surroundings, the wind on my face, the sight of the gorgeous fall foliage, the way the light has changed now that we’re into autumn, the crisp smell of the air–it’s all really quite wonderful.

And sometimes, you just have to drag your ass downstairs and onto the treadmill because there’s a nor’easter and the rain is just a bit too much. Whenever I run on the treadmill, I try to be elsewhere in my head. Just focus on that ink blot kind of spot on the basement wall and think of running outside. The other day, though, in that rainy weather, I was halfway through my run, when my husband came downstairs to continue to sort his father’s belongings. After his father died in March, his mother moved back to Maine and brought much of their “stuff” with them, which is currently being housed in our basement. My husband’s job is to look through what’s here and determine if anything should be kept, donated or thrown out. Watching this man, whom I’ve loved and spent nearly my entire adult life with, slowly pick up every one of his father’s items and toss in one bin or another, was difficult. I saw this wide range of emotions pass over his face (grief, apathy, confusion, joy) and I couldn’t help but wonder if some day, I’ll be doing the same task with his things.

As many of you know that read this blog, my husband has had a variety of health challenges over the past four years, with the worst being congestive heart failure. Just this summer he has finally gotten control of his diabetes, which was a huge contributing factor to his worsening health. He feels better now that his blood sugar is where it should be, doesn’t ache as much, feels like living again. And yet…he has chosen to face up to the fact that he may not live another 10 years. In this day and age, when you’re 55 you think you might have at least another 20 if not 30 years left. But when you have a chronic health condition, especially one like congestive heart failure, living to a ripe old age is just not reality.

But while he was sick, he didn’t want to talk about, nor was honest about his mortality. Nothing. And now? This weekend I mentioned that one of the retirement accounts I have, I can actually start withdrawing from in 10 years. He said, so matter-of-factly, “I’ll never see you do that.” At first I didn’t know what he meant. Then I asked, “Because you won’t be here?” He replied that yes, he’ll be dead before then. There was no joking, no laughter like we often do when we talk about our health or aches and pains. It was just a fact and nothing more.

For several years, I’ve known that my husband will not live to be a very old man. And I’ve been ok with that fact. Sound cold-hearted? Maybe, but I come from a long line of women who outlived their husbands and kept living anyways. It’s what women do. Plus, in all honesty, I am very different from my spouse and live a different life, a healthier lifestyle for sure.. I am more social, do different activities than he does, often eat different meals.

But the reality of living alone, after our son has grown, isn’t the most welcoming thought I always figured it would be. Just the other night, I was lying on the couch, reading, with the tv fireplace glowing. My kid was out and my husband was sleeping, so I felt like I was all alone in my home. And for a few minutes I just sat in that feeling of being alone, or rather, being widowed. I have my son and many friends and a few family members, so I am not lonely but often enjoy being alone. This night, though? It was a little scary, a bit sad, and not the best feeling. It’s something I’ve been talking to my therapist about, to understand what’s going on in my brain and heart.

So now, I really, really try to enjoy my time with my spouse. There will always be moments and hours that I’m angry with him or frustrated or fed up, but that’s ok. We’re humans and living with and loving someone for decades is not an easy thing to do in all honesty. I think it’s tough as shit. But we do our best, right? We carry on, we try to live our lives as well as we can, and we love as much as we can, too.

So that’s what I’m going to do.

Love well and carry on.