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A New Chapter

The last time I wrote in this blog, I was married to the love of my life.

Now, I am a widow.

I still wear a ring, but he doesn’t.

My life is a new marriage of sorts. I must weave the before with the after. I sit at his desk, in what was previously his office, dividing my time between reconciling the past and preparing for the future. Simultaneously I must settle his affairs while making sure my own are ready for future days. I spend a little bit of time every day working through legal documents, finagling various types of insurance, and preparing for taxes. I am the chief cook and bottle washer now.

This blog will probably have a haphazard appearance (not that it was very ordered before, TBH), as I strive to cover a varied terrain.

I will write about the last vacation we took before we knew he was sick and talk about my own solo travels. As I write this, I have just arrived from a one week beach vacation where I mourned and healed. In fact, I have several trips coming up this year. Last year we had but one: our last Vegas adventure. I’ll have to write about that, too, I guess. I have a lot of leg stretching to catch up on this year.

I will blog about his celebration of life party, and about the hell of watching someone die by degrees. Of watching the man who used to hold you up become the one you must support. I went from being a friend and a lover to a nursemaid. It sucked, but I am not alone. In fact, I now have 90-some thousand new friends walking my widow journey with me. I decided before he died that I would need a way to keep myself accountable. So I created a TikTok grief journal, and every day I post something. Some days are decidedly more interesting than others. Some posts show me drowning in grief, while others show me making new strokes forward in the ocean of possibilities. I’d love to have you follow me, and help me stay the course!

We’ve all heard that the first year is the hardest, although now I’ve been told it is actually harder in year 2, when the new loss becomes the new normal. But I need to get through year one first, one post at a time.

Grieving is something that takes place on a sliding scale. For me, that process really started October 1, 2021, when we first heard the words “You have ALS.” I can still remember everything about that. I dropped him of at the entry to the University of Minnesota Neurology department, and watched him limp inside, leaning heavily on his late father’s walking stick. I parked the car, then found him. Our roles had already changed. In the waiting room we were both casually terrified, trying not to look outwardly concerned. I think he was more worried than I was, which makes sense. I think he already knew the diagnosis. I was living on edge in the dark, impatiently waiting for someone to tell us he did NOT have that hideous disease, .

Once in the exam room, the doctor had clearly read through the myriad reports from other doctors, and had analyzed the test results. Rich sat on the exam table, while the doctor checked his reflexes. It seemed to take him less than a minute to declare Rich’s death sentence, but I am sure it was longer than that. I was sitting in the spare chair they always have in an exam room. I know it was just maybe 5 feet away, but the doctor’s words sucked all the air out of the room and I felt as unsteady on my feet as Rich had been for months when I lurched up and crossed to the exam table. I put my hand n his shoulder, but that wasn’t enough. I needed more. I pressed up against him, and clutched his leg, trying not to hold too tightly or breathe too loudly. In the few steps it took me to cross that increasingly claustrophobic room, I had a million conversations with myself. I transitioned from panic and sorrow to determination and caring, because that was now my job. I needed to be what he needed, whatever that was, and my own needs had to be put aside.

Now it is time, once again, to tend to my needs.

Slowly, the world we built for two has become a universe of one.

I still make the king sized bed, but only have to wash the pillowcases on one side.

His clothes, now donated, are hopefully bringing someone else a smidge of the confidence he had, and I have started spreading out in the closet, reorganizing my things to suit my new lifestyle.

When Rich was first diagnosed, we had two cars in the garage. Then three, when our daughter came home home for one last summer with her dad. Then two, when we sold his car. Then three again when we bought the wheelchair van. Then two, when she went to school. Then one, when I sold the van. My car now also lives alone.

It seems every week I rearrange a drawer or a closet. I feel like I am marking my territory, by making things work in my new normal. It is also a way of visiting with him on a small scale, as I run across something of his, whether it is a business card or a pair of swim goggles or a tool he never put away in the right place. I fear, and hope, it will be a long time before the last item is discovered. Like an archeologist, I will be unearthing bits of his life for years to come.

And every day, I unearth a bit more of my life. My new life. My widowed life. My rebuilding life. My strong, sad, capable, terrified, hopeful life.

I can do this. With the continued support and help from all of you, I will do this.

Sicily is Not Italy…

If you read my last post, you’ll know that we have some new challenges in our lives. But I’ll be damned if we curl up in a ball and hide from the world.

So, despite HWSNBN’s ALS diagnosis, we set out last month on a long-planned trip to visit Sailor Boy in Italy.

Correction. Sicily.

Wait, you say: isn’t Sicily a part of Italy? Well, yes, politically speaking. And yes, they speak Italian and have phenomenal food and fashion sense, and horrific driving. But we learned quickly that when you are a land that has been around for 10,000 years, it takes more than a measly 162 years to make you really a new identity.

But more on the history lesson later. First, we need to get to Europe.

Months ago, before I knew we would have the ALS to consider, I decided to utilize a travel agent for the first time to get this trip planned. Enter the amazing Amanda from Pique Travel. She had everything planned: hotels, cars, tours and guides, even wheelchairs at every step of the way. We used the app Unmapped to keep tabs of all reservations and tickets, and of course utilized What’sApp to communicate with her and our European contacts.

ALS was our unofficial travel partner all the way through, and he made us nervous. He was always there in the back of our minds, slowing us down, causing anxiety as we worried about how he would try to complicate and crash the party. Thankfully, contrary to popular belief, the world is full of amazing, humans willing to go out of the way to smooth things out for us.

The minute we pulled up at MSP airport (driven by the amazing Abdulla, referred to us by friends Christie and Jim. Let me know if you need his number for your driving needs!), a wonderful airport worker jumped into action. Seeing me wrangling multiple suitcases and Rich trudging along with his walker, he declared: “You need a wheelchair!” We didn’t even get inside to ask at the Delta desk for the one reserved for us. The MSP staff took charge, chauffeuring Rich and helping me get everything to the front of the check in line. (FYI: being physically challenged DOES have its perks: we went to the front of every line in every airport in all three countries, from check in to security to boarding to customs. Nice!). After we were checked in, we were escorted through security (thank you Clear — always worth the subscription fee IMO), then had time to enjoy the PGA Lounge (courtesy of Priority Pass, a great perk we got with the Chase card — thanks for the tip, Thrifty Traveler!). We asked our escort what to do when it was time to head tot eh gate, and she assured me someone would meet us at the lounge, and they did. Our escort was going off duty, but came with a coworker to make sure we were cared for correctly. Wow: mad props.

The flight worried us: HWSNBN can’t move easily or quickly anymore. When he needed to get up to stretch or use the restroom, I walked in front of him, facing him, holding his hands to keep him safe. It felt precarious, and probably disruptive to some (it’s hard to walk steadily on a plane during the best of circumstances), but everyone resected our odd journey. Flight attendants cleared the aisles for us, and constantly asked how they could help. They also, before I could even bring it up, let me know that they had confirmed that a wheelchair would be waiting for us at the gate.

Classy, professional, caring. Thank you, Delta!

We arrived in Amsterdam unscathed, but tired. Normally I schedule flights to Europe for late in the evening, but this one was an afternoon flight. There aren’t a ton of flights daily to Catania, and we were also coordinating with Singer Girl, who was flying n from Detroit. Our flight landed a couple hours before hers, and we went to the transfer station to make sure we were all set for the next flight. The lovely woman at the KLM desk realized our luggage was not checked all the way through, so quickly fixed that — and told us to come straight to her desk when our daughter arrived so she could personally make sure hers was set as well. When we di that, the woman immediately recognized me and said “Catania!” I mean, how many travelers had she helped in the past two hours, but she still remembered us and our destination. I know I am pretty memorable, but wow: again we were impressed.

The flight was also uneventful, and we were treated with views of Mount Etna, quietly exhaling her volcanic breath as we approached.

Once again, a wheelchair was waiting for us. Unfortunately, our luggage was not. Somehow all the good efforts of the KLM transfer desk agent were in vain. I felt a bit like Etna as I dealt with the situation as best I could: breathing deeply to let off steam so I didn’t blow my top. I know HWSNBN was frustrated that he couldn’t really help. Singer Girl went out to greet our driver, Stefano, and fill him in on the delay. We had no idea where our nags were or when they would arrive, given the afore-mentioned lack of Catania flights. But we finalized the paperwork, loaded ourselves into the van, and headed, finally, to the hotel.

Sailor Boy was meeting us for dinner, and bringing along his darling Sicilian girlfriend who we had of course not yet met. I informed him of the AWOL luggage, and he assured me our hotel was in a prime shopping district. Once HWSNBN was safely ensconced and napping at the hotel, Singer Girl and I ventured out to get supplies for the next two days. I typically don’t visit any stores or restaurants on vacation that I can visit at home, but desperate times call for desperate measure, and there were an H & M and a Sephora on the same block, so off we went. We purchased some basics for all 3 of us, and headed back to quickly do what we could to tidy up before dinner.

We were staying at the Hotel Una Palace in the heart of historic Catania.

Yes, that is a cactus growing in the gutter!

We had a small suite: spacious bedroom, bathroom, large walk through closet and small sitting area with couch. It was just the right size for spreading out and wheeling about a walker and wheelchair. The hotel had an elevator, which theoretically made it accessible for those with mobility issues, but man those European shower/tub combos are a bear when someone is unsteady on their feet and can’t easily bend their legs! But we managed!

We supposedly had reservations at the stunning rooftop restaurant, Etnea. However, when Sailor Boy and the Lovely Lisa checked in for us, the restaurant couldn’t find our reservation. Exasperated, I sent them Sailor Boy the confirmation email. He texted me shortly afterwards.

“HAHAHA. Mom. That’s in Turin. I don’t think we can make that reservation, it’s a good 3 hour flight.”

Well. Dammit.

They were able to fit us in — although an hour later than we planned, because Sicilian restaurants rarely open for dinner before 8pm. So we made do with snacks and the best damn tasting cocktail I have ever freaking had. Dinner was great. We all laughed, and were so happy to finally be together. Lovely Lisa was as charming as Sailor Boy is goofy. She was nervous meeting us, which is silly, but I understood. She hit it off (I think!) with all of us.

After dinner, it was more than time for bed. HWSNBN and I crashed at the hotel, while Singer Girl was staying at her brother’s apartment. We said goodnight, eager to see each other again in the morning to begin our Sicilian experience in earnest (and in newly purchased clothing…but I digress…).

HOtels in Europe do the free breakfast thing waaaay better in the states. I popped down in the AM and brought up a plate for HWSNBN. Here’s a really underwhelming pic of the buffet, which had cakes, pastries, meats, cheeses, fruits, veg and more.

After breakfast, we met Mario, who was to be our guide (and friend) for the next few days. We were doing a walking tour of Catania. We met the kids at a café, where Mario plied them with espresso and arancini, the amazing fried rice balls native to the area, as they had not been privy to the luxurious hotel fare. Fortified, we set off.

So about that history lesson! Sicily has been inhabited for 10,000 years, and, during that time, has been settled or ruled by many dynasties, including the Greeks, Romans and Bourbons. All over you see the influence of these cultures and all the others around the Mediterranean. The Turks were in charge for awhile, and during the Muslim rule of the 9th through 11th centuries, Catania became known as the city of the elephant. Why? There is a black lava stone elephant fountain (topped with an Egyptian obelisk) in the main square. U Liotru, as it is called, is the city’s symbol. Was there an elephant on the island? Maybe!

The island’s buildings and layout are absolutely colored by not only the cultural diversity, but by the geological history. Catania is known as the black city, as the oldest roads and buildings are made from lava stone (thanks, Etna). But thanks to massive earthquakes and WWII, the cities are varied, making them a fascinating architectural study (many buildings were constructed not only on top of old foundations, but from the ruins of the ones that preceded them).

Italians take their Christian holidays pretty seriously. Sicily is famous for its creches, or manger scenes. This one inside Sant ‘Agatha of Sicily, who was born in Catania, was stunning — and about 10 feet long!

There are certain things I always take pictures of on holiday: markets, doorways and side streets. This trip was no different. Mario led us to a stunning food market, where we feasted with all our senses.

Oh: and I also have a thing for funky vehicles…

The fod market was an appetizer course: we had local pistachios and nut brittles, and Sailor Boy had oysters right there on the street.

Then Mario directed us down this charming street…

…then directed us to wait in front of a shop. Singer Girl took the opportunity to make a local feline friend…

…and Mario worked his magic. As we watched, a flurry of people swarmed out of the shop, and set up little tables and chairs for us. They set the tables, and invited us to sit. nest thing we knew we were eating cheeses and meats, hand picked by Mario, and drinking wine, as we watched the world go by. One of my favorite trip moment, as a humble alleyway became OUR personal restaurant.

Then we wandered further through Catania, back through the square and past our hotel. The main street was bustling with shoppers. We looked in windows, but we were so happy to be outside in the sunshine we didn’t want to stop. A running joke began that day: the Sicilians thought we were crazy. While we reveled in temps in the 60s, they bundled up in scarves, coats and gloves. At one point, someone yelled to a tank-top clad Singer Girl “where are you from?!” We enjoyed stressing Mario out by our lack of winter garb!

Our last stop on the tour was at Savia, where Mario treated us to more arancini and pastries — and wine, of course. Mario had “American prosecco”: Coca Cola.

We said goodbye to Mario for the day, the kids headed back to Sailor Boy’s abode, and HWSNBN and I went to the hotel to nap — and see if our luggage had arrived. No such luck. I logged into the website provided me by the Catania airport, but it was all in Italian. I decided to go to Twitter to get answers. I described our plight, mentioning my husband’s medical condition and the fat tat we were in town visiting our military-serving son. KLM responded less than 4 minutes later! Within 30 minutes we learned our luggage had boarded a flight to Rome the previous day by mistake, and would be arriving at our hotel within a few hours! Such great news — and great customer service!

When it arrived, I unpacked and we got to shower and do all the things you take for granted when you have your luggage, lol. We decided to walk to the restaurant for dinner, rather than make the kids try and pick us up (it was tough to do so, as no private cars were allowed on the street front of the hotel). It was drizzly, so my hair was a mess by the time we got there, but it was a riot, navigating cobble stone streets in a wheelchair. I burned off all the days treats for sure, and we joked that it is not a vacation until HWSNBN and I get lost on a “Bataan death march,” as my family likes to call my happy meanderings.

That night we ate at one of Sailor Boy’s favorite Michelin star restaurants, Km0.

We had a dreadful time…

Singer Girl decided to crash on our couch that night, as Sailor Boy and Lisa had plans with her friends, and he wasn’t going on the tour with us the next morning (she also wanted to check out the hotel breakfast buffet!). We said our goodbyes, and went back to crash, and dream about what visual and gustatorial delights awaited us in the morning!

Catching Up Is Bringing Me Down

It has been so long since I have written — here, anyway. More on that in a minute.

This is a quickie, to just touch base and let you know I’m not gone. But 2021 was kind of a shitshow for me, and my new normal is kind of stinky as well.

In June, my dad died. He had suffered from Alzheimer’s for more than a decade, so it was time. The end wasn’t pretty (I’ll never forget the sound of the “death rattle” as the hospice nurse called it). But it’s over. He is no longer disintegrating piece by piece, so we no longer have the internal war of wishing him peace, but not wanting him gone. I have a tribute post in the works, and will hopefully get to that next month.

Last spring, HWSNBN (my husband who abhors social media) finally decided to see someone about some hip pain he was experiencing. The chiropractor helped for awhile. Then he saw an orthopedist, who suspected an arthritic hip from all his years of long distance running. PT was prescribed, but it got worse. During the Boston trip (read that post here), he calmly shared with me that he couldn’t feel his right leg. It “woke up”, but we were shaken.’

He tried a steroidal injection, and that helped for a bit. We managed a Vegas trip in July, and had a ball. But shortly after we returned, the pain was back, and worse. He continued to be unable to run, which was just killing him. The orthopedist was alarmed, and decided it was tie to see a neurologist.

What followed were rounds of tests — blood work, MRIs, EMGs, manual assessments and more. And then they were repeated. On October 1st, we learned that after excluding everything else, they determined he has ALS.

So yeah. Shit.

Since then we have been busy coming to terms with what that means, now and in the future. What future? Who knows. Could be years. Could be, well, not. So far his breathing, speech nd swallowing remain unaffected, an for that we are grateful. But in the just over 3 months since he was diagnosed he has gone from walking painfully to using a walker and now starting to rely on a wheelchair. His right leg is almost useless, and his left isn’t very cooperative either. His hands and arms are weaker, but we don’t know if that’s the disease or the result of overuse from gripping the walker.

Date nights are gone, replaced by home stretching sessions and the never-ending struggle to keep him comfortable. To that end, a lift-assist recliner, swivel tv tray with handle and sleep number adjustable bed are all entering the home in the next week.

Friends, family and coworkers have been phenomenally supportive. “How can I help?” is the phrase I hear mot these days (well, maybe “Donni can I get some help?” is uttered more frequently). From putting air in my tires to bringing meals, to moving things into the attic and running errands, people are amazing. Truly.

I mentioned earlier that I have been writing, just not here. We have a Caring Bridge site that we sue t keep folks updated (check it out here). It’s cathartic for me as well — although, as Singer Girl reminded me, it’s not a therapy session. So I tend to hold back on the feelings there. I will likely be less inhibited here.

But not every future blog post will be about being a CALS to my PALS (caretaker of one with ALS, and person with ALS. All the cool, exhausted people use acronyms). I hope to post tomorrow about our fabulous trip to Sicily to spend Christmas with Sailor Boy. Lots of photos, as usual, so I’ll get at least 3 blog posts about that.

Thanks for listening. I know it’s a downer, but life isn’t all vacations and fashion. Nowadays, I’m thrilled with any me time and clean sweats (is it wrong that I found my filling at the dentist this week a relaxing respite of me time?).

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