Saturday, October 12, 2019

A Metaphor for Just About Everything

In the week leading up to the surgery, I started an 1000-piece puzzle that I'd bought after our trip to Colorado. As a fan of WPA posters of National Parks, I thought the puzzle would be a nice way to spend time with the kids during all the downtime and long periods of waiting that come with surgery and recovery. The puzzle turned out to be a total jerk, though, with purposely misleading shapes and impossible to identify markings. Friends who have done other WPA National Park puzzles later told me that this was a thing. I didn't know that when I started, though.

At the beginning
Soon, the puzzle became a pretty accurate metaphor of, well, of a whole bunch of things. It looked easy enough but was unnecessarily hard. On the outside, the puzzle seemed pleasant, almost peaceful, but on the inside, it was a jumbled, untangleable mess. Then there was the fact that I couldn't get anyone to actually DO the puzzle with me--not even Big Sissy who had come to help and who normally can't walk away from a puzzle once she starts.

In the end, I found myself obsessed with the stupid thing, staying up too late, drinking scotch, and watching Letterkenny, completely unable to walk away from it. And then, after working on it for hours, discovering I'd only managed to fit a handful of pieces into place. This went on for weeks. Ren's surgery came and went, as did his hospitalization. In the second week post-op, my brother came to help. Unsurprisingly, he also had no interest in the puzzle. As life post-op went on, I found myself stuck, making very little headway with it.

The state of the puzzle on the night before surgery.
Two and a half weeks post-op, on the night before school started for the kids and just over a week before my own semester started, I finally had a breakthrough with the puzzle. Sure, I stayed up too late and watched way too many episodes of Riverdale, but by the time I crawled into bed around 1:30, it felt like the end was in sight.

The next morning I woke up feeling more positive than I had in awhile. When Ren came rolling out with his walker, I said, "Look at the puzzle! I think it's really coming along" Pink was the first to ask me if I was being sarcastic. Ren just kind of stared at me.

You guys, I feel like I've become pretty good at taking a lot of things in stride. But, when I saw what the cats had done to the puzzle, my brain kind of short circuited. On the outside, I looked utterly calm and unconcerned, but in my head, I was sure this was the final sign that all hope was lost.

In a rare moment of insight, Ren and the kids seemed to know exactly what was going on even though I didn't say anything. Pink and Stow set about trying to fix it, and when I told them to just put it into the box, they did so as gingerly as possible. Ren encouraged me not to give up and suggested I keep going despite the setback, but I knew I didn't have the time or energy to do it all over again.

Waiting with the kids for the bus, I texted my brother to tell him what had happened. He asked if I planned to try to fix it, and when I said no, this is how he replied:

"Then I should probably tell you about the piece I took out and hid from you now?"

"It's in the top drawer of your coffee table...I couldn't resist...Sorry (not really)."
Suddenly, the puzzle became a whole new metaphor. It turns out that no matter how old you are, you can never escape the antics of your older siblings. Worse? Ren saw my brother hide the piece, making him an accomplice to this particular crime. Had I gotten to the 999th piece and found the last one missing, I would've been pretty upset. Had I then learned that my brother and the spouse I WAS SPENDING MOST OF MY TIME HELPING RECOVER FROM A SPINE SURGERY were pranking me, I'm not sure it would have ended well for Ren. As it was, I asked Ren why he didn't tell me about the puzzle piece. "I completely forgot about it," he said. Given his level of pain and the meds, I guess I could buy that.

I added the missing piece to the box and tried to forget about the puzzle.

But, I couldn't seem to let it go, and I found myself feeling more aimless and isolated than I had before the CATastrophe. It was about this time that the puzzle became a metaphor for not giving up and for trusting friends because the next day one showed up with a puzzle keeper and a few hours of free time and worked on the puzzle with me until it was almost back to its pre-cat state.

Almost back to its pre-CATastrophe state
A few days later, I put in the last piece. Only, it turns out it wasn't the last piece because, this puzzle wouldn't be a useful metaphor if it wasn't STILL MISSING THE PIECE IN THE VERY MIDDLE. I told my brother who swore that he hadn't taken two pieces. Knowing how much he revels in being the source of my unhappiness, his lack of glee convinced me he was telling the truth.

999 pieces
In Japanese, there's this phrase shikatta ga nai which comes in really helpful at a time like this. I mean, what was I going to do about it? Somehow over the weeks of the puzzle sitting in the middle of a high-traffic area, a piece disappeared. I looked for it, of course, but it was gone. So, I did the only thing I could do; I rolled up the puzzle and stood it in the corner of my bedroom, assuming that one day we would either find the piece or I would give in to the idea that 999 pieces of an 1000-piece puzzle was indeed the perfect metaphor for my life.

The 1000th Piece
In the end, though, I guess I don't know WHAT the puzzle is a metaphor for because once Ren started feeling okay, and once he started helping with cleaning and decluttering again, he found the missing piece at the bottom of an empty sanitary napkin box that Pink has been using to hold her colored pencils.

There. Analyze THAT!

Friday, October 11, 2019

The Alpine Slide

Remember how I said I was going to get the kids to the mountains this summer if it was the last thing I did? Well, we made it, and it went about how you'd expect it to go.

There were the meltdowns and freak outs that come with any change in routine, and, like usual, Stow was ready to head home after 72 hours away. Still, I had a chance to hike and canoe and breathe mountain air with the kids, and that was pretty amazing.

Canoeing on Grand Lake
We landed in Denver and picked up a rental car that all three kids disliked because when they sat in the back their bodies touched. "Why didn't you get one of those big SUVs?" one asked. "This is a vacation," chimed in another. "Why do you have to be so cheap?" Three minutes into our drive from the airport, Sky wanted to know exactly when we would see our first mountains, and Stow wanted to know when we'd be stopping for lunch.  Fortunately, once we hit more mountainous terrain, all got distracted by trying to determine the types of rocks and outcroppings they were seeing (score one for just enough geology knowledge to keep them occupied!).

We spent our first night in Estes Park in a tiny motel with magnificent views and a place to build our own campfire (which went ok until Stow became increasingly brazen in his efforts to show us how well he could snuff out the tiny side fires he kept lighting). Sky fell in love with the mountains around Estes Park and the shirt he bought as a souvenir there (this last piece of information may seem random, but it will make more sense in a minute--I promise), and he was sad when we headed into the park and across Trail Ridge Road to our second destination.

Stop along Trail Ridge Road
Since Ren couldn't really hike, I was pleasantly surprised by all we could see and do as we made our way across Trail Ridge Road. The short hikes we could take from various stops and the wildlife we saw along the way thrilled the kids, even as I knew that a younger more mobile version of myself would have ridiculed people like us for being such lazy tourists.

We spent the bulk of our vacation in Grand Lake, the small town where I worked for a summer as a college kid. Sky didn't like it because it wasn't Estes Park, and Stow didn't want to leave our rental cabin because it had a bunk bed and cable, and we'd been away from home for 72 hours so clearly this was our new home. (Have you ever tried explaining the difference between being on a trip and being "homeless"? Because, it's not as easy or as obvious as it sounds.)

Grand Lake and Stow
On the fourth day, we drove to Winter Park where we bought ridiculously expensive day passes so we could enjoy the gondola, alpine slide, putt-putt golf and other activities. Day four is where the trip really started to take a Moe Family turn. We went to Winter Park so the kids could ride the alpine slide (described as Colorado's longest alpine slide with "over 3,000 feet of heart-pounding track"), but the alpine slide requires a ski lift ride, and a ski lift ride for three children, two of whom are on the spectrum, requires, at least at first, two adults.

See the conundrum?

The guy selling the day passes told me that Ren couldn't ride the lift up unless he was willing to take the slide down. He also told me that Ren's spine issues wouldn't prevent him from riding the slide. When I conveyed this information to Ren, he decided it was a perfectly cogent idea for him to take the lift up with Stow and to ride down on the slow track.

On this first trip, Sky led the way followed by Pink. I took the middle with Stow behind me and Ren bringing up the rear. Everyone made it down safely, though I think I probably triggered an adrenaline rush for Pink when I nearly rear-ended her. And, I am sure the group of teenagers who came behind Ren weren't thrilled by his snail's pace.

Alpine Slide

Yay! We made it down safely and the kids had fun!

The logical next step would have been to walk away from the alpine slide. But, our passes were for limitless rides, and we're nothing if not passionate about getting the most for our money. So, I told Ren I'd take the kids on the slide again.

"I'll come, too," he said.

When you live with someone who has a life-altering and painful physical disability, you learn not to tell them how you think they should live with that disability. So, even though I really wanted to tell Ren to quit while he was ahead, I didn't want to stop him from something he felt like he was capable of doing.

My second ride down the mountain was faster and more exhilarating than the first. As each family member arrived safely at the bottom, I felt buoyed by the fact that we were doing something normal. But, then Pink came in with Ren close behind, and before she could tell me about his spill, the attendant at the bottom of the slide was explaining how to get to first aid.

Do you know what's hard to do if you have a titanium rod from neck to tailbone? Bend. Bending is impossible and also completely necessary if you get going to fast on the alpine slide and need regain your balance. Since Ren can't bend, when he started to tip, he couldn't recover without relying on contact between his arm and the side of the slide. Today, three months later, he still has slide burns--they're healed, but the scars look like no other injury we've seen.

When we got to the first aid tent, my biggest worry was that the open wound on his arm would prevent him from being able to have surgery. The nurse gave us some petroleum jelly and some bandages and told us how to keep the wound clean and moist for quicker healing, and after a few gondola rides and a round of putt-putt golf, the kids decided they were ready to take on the alpine slide on their own.

On your second visit to the first aid tent, you know it's time to walk away from the alpine slide. While Ren managed to get a shallow slide burn that covered most of his forearm, Sky got a small deep one on his shoulder that closely resembled a golf divot. The Japanese last name I gave the nurse when we arrived at the tent the second time made her raise her eyebrows, "I thought you looked familiar," she said to me. Armed with more petroleum jelly and clean bandages, Sky and I found the rest of the family, and we all agreed it was time to head home.

"I can't believe how unlucky I am," moaned Sky, who was distraught about the hole in his new t-shirt, and whose day had been ruined by that last ill-fated alpine slide run.

Ill-fated shirt
"Look," I said. "Don't let that one moment ruin a really good day. I mean, it WAS a pretty great day, right?" Reluctantly, he agreed.

I suppose our trip to Colorado taught us all that every day is full of a lot of good and a little bit of bad and we that can choose which of those things will be our focus--

--which isn't to say that I didn't have to spend a chunk of the last few days of our vacation looking for a shirt to replace the one with the hole, because I totally did.

Wednesday, October 9, 2019


Oops. Apparently I wrote this and forgot to post it. That tells you how things have been going...Anyway, here's something from August 19th. I'm working on an update. Promise.


It has been two weeks since Ren's SEVENTH spine surgery. In the weeks leading up to it, I felt an overwhelming sense of dread that I haven't had before the other surgeries. I mean, I've never looked forward to them, and I've always gone through a process of being angry and sad about what was about to happen, but this time, I just couldn't shake the feeling that I just didn't want to go through this again. For weeks, I thought about it, but I couldn't quite put my finger on why this one felt so much worse than the others.

Then, the morning of surgery, as we went through the various steps of pre-op--helping Ren get disinfected and dressed in a paper gown; watching as he was hooked up to heart monitors and put on an IV; talking to the anesthesiologist and the surgeon; waiting, waiting, and waiting some more--it started to dawn on me that we were about to hit reset on our lives once again.

When Ren has a surgery, it's a bit like getting killed when you're trying to make it through the level of a video game--you die and then you have to start again. This time, we'd made it longer between surgeries than ever before, and I didn't want to start over again.

The first spine surgery was March of 2012, and this last one was August 2019--seven years and five months between the first one and the last one. Seven spine surgeries in seven years. But, this time, you guys. This time, we made it for 742 days--just over two years! I really thought we had finally completed the spine surgery level of this video game of our lives.

The new hospital rooms had smart boards. "Get well soon!"

Instead, we find ourselves respawned once again. Going through the same level over and over again has taught us some things. We generally know what to expect with the surgery and post-op. Each time, we gain some new skills. This time, for example, we made sure to get all of the assistive devices out and ready before going to the hospital, and I even remembered to get his post-op prescriptions filled ahead of time. Knowing that I would be homebound and essentially unable to do work while caring for Ren and the kids, started working on a puzzle that I knew would keep me both distracted and present for everyone. None of these are earth-shattering changes, but they are things I didn't do for previous surgeries because we were in denial about what was to come.

Having new skills and knowledge to draw from for each surgery is a blessing and a curse, though. This time, more than ever, we understand that the respawning can be unpredictable and sometimes pretty traumatic. Some surgeries, we respawn really close to where we were pre-op, so the way forward is clear. Other surgeries, we've been sent back to the beginning of the level and had to work out a better way through the obstacles we encountered there.  And, last surgery, we got respawned into a place we'd never been before.

Hardware removed from Ren's spine.
I get that this is a terrible metaphor and probably even worse if you don't know the first thing about gaming. But, the point is that each surgery takes us out of the game and the puts us down somewhere unexpected or unfamiliar, and then we have to figure out how to get back into the game and make forward progress. At this point, it feels a lot like an exercise in futility. And, it reminds me why I stopped gaming.


Last surgery, we were respawned into a world of medical complications that took us months to traverse and untangle. For weeks, I wasn't sure if Ren was going to be ok. He remembers nothing from the first two months after that surgery. This surgery has put us into an equally bewildering place. This surgery, Ren has had the fewest complications of any surgery thus far. Surely, this is because we spent a lot of time talking to the surgeon and the anesthesiologist to troubleshoot what went wrong last time. The surgeon has also continued to improve his procedures based on the latest findings, which I am sure also helped. Not since the first surgery back in 2012 have we respawned into a world where Ren has less pain than he did before surgery. We are, of course, very thankful. We still have four more weeks of no driving and ten more weeks of no bending, twisting, or lifting, so we aren't out of the woods, yet.

It's nice that no one has needed to go to the ER in the past two weeks, though.