Dispatches From a Former Caregiver—Trying to Get on the Right Track, and the Right Train

Today’s blog post is the second of in a recurring series from our friend Scott Liniger, who was an ALS patient caregiver for his partner Tammy Hardy for six years. In his series “Dispatches From a Former Caregiver” Scott hopes to explore the parts of his and Tammy’s story that tend to the, shall we say, more irreverent side of their journey.

Scott’s story today picks up shortly after his last Dispatch. After some additional drama with rental cars, Scott, Tammy and their friend Chris have made their way to the Milan train station as the head to Lyon, France. At least, that’s the plan…

By Scott Liniger

After a few days in Italy, with zero ability to speak Italian, Chris and I determined that we could get by if we just added an “o” to the English words. It was time for lunch-o, and yes, please-o, a bottle-o of wine-o would be wonderful-o. Of course Tammy-o was much bemused by this. And with plenty of vino at lunch, we were all speaking fluent Italian-o. This worked well enough in Venice, which is geared for tourism, and English (and just about any other language) menus and speakers were plentiful. If only that had been the case at the Milan train station. Having made our way to the central station, after we’d dropped off the rental car and taken a taxi to get there (did I mention we could’ve just taken a train directly from Venice to the central station?!), we were ready to leave Italy-o for Lyon-o, France-o. We even managed to have a bit of extra time to grab an espresso.

But….I did not anticipate spending fifteen minutes trying to find the elevator to get us to the train platforms. Here again, Milan has been around for a while, as has its train station. It wasn’t necessarily designed to accommodate someone who can’t walk up 107 flights of stairs (maybe it wasn’t quite that many, but it was more than a couple; way more; think Venice and the canals). We found this very kind gentleman at the assistance desk and asked him if there was an elevator. Ah, the puzzled quizzical look one gets when the person one is speaking to hasn’t got a clue as to what you’ve just asked. An elevator. An elevator-o (don’t think I didn’t try that). Lift. Lift-o. Before long, I was full-on “we-o are-o trying-o to-o…” and on and on-o. Nothing but blank stares. At some point, I gathered he didn’t think we qualified for such a modern convenience. Since Tam wasn’t using a wheel chair, it perhaps wasn’t clear that she couldn’t walk up or down steps. It was getting near our departure time when suddenly the Italian gentleman flashed a smile and said, “Disabile!” Wait?! What?! That sounded like “disabled.” Could that be it?! He pointed down a corridor to an elevator. Disabile! We all smiled and shouted “Disabile!” practically operatically, as we headed to the elevator-o—or perhaps or elevator-ile.

The thing about trains in Europe (and honestly, just about everywhere) is you can buy a reserved seat ahead of time, or you can buy a ticket and find yourself a seat. Many, many passengers book their seats ahead of time—many, perhaps most, with the exception of last-minute seat-of-the-pants tourists. Now, I knew this. I’d encountered this before. I had no excuse for not being aware of this. Turns out I may have forgotten. Let’s review: Three of us are traveling. One of us, Tammy, is very limited in her mobility and speed. One of us, let’s say the person not named Chris or Tammy, may have packed a few too many items. We didn’t lovingly call Chris pack-mule for nothing. About, oh, maybe three minutes before the train was due to depart, after we’d gotten the luggage stowed and Tammy situated, the people who rightfully belonged in those particular seats showed up, now wanting to take said seats.

To be fair, not only were they in the right about their seats, they also didn’t speak English. There really was no point in trying to plead our case. It’s also possible I may have just then remembered that yes, seats were reserved and hey, we were in the wrong ones. Said so right there on the old ticket-o. Two minutes to departure. We decided the luggage was good where it was (and there wasn’t any room for anybody else’s), so Chris grabbed Tam’s walker and I grabbed Tam. We jumped out of that car and raced to find our actual car and seats. Thirty seconds to departure—found the car, found our seats, and took deep breaths. Which, as it turned out, included MUCH smoke. Yep, the fine folks at the ticket office put us in the smoking section. I knew I’d packed all those extra clothes for a reason.

I know what you’re thinking. How on earth did these bozos even manage to get to Europe, let alone get back home? And surely Tam could’ve chosen more wisely. Very fair, very legit questions. Oh, and yes, it has only been about four days total that we’ve been in Italy. All I can say, in my defense, is Tammy wanted to go.

We wound our smokey way towards Lyon. We were meeting a friend, Adriana, who herself was visiting friends who lived in a small village not far outside of Lyon. We’ll save that story for next time, because, well, this was a very eventful trip! Now back to our smoke-filled train car.

I don’t recall exactly why we did what we did next. I’m sure it was something stupid I did or didn’t do. Or didn’t notice. Or couldn’t read a map. Or misread a map. The more I think about it, it likely was because I misread or misunderstood the train stops. For someone who, again, had traveled more than once, I certainly was making a lot of rookie mistakes. We were approaching Lyon, our destination, when I noticed the main Lyon train station didn’t seem to be listed as a stop. In hindsight, I was no doubt wrong about that. The main station in Lyon is Lyon Part Dieu. But with my French as solid as my Italian, I did not think that was where we wanted to disembark.

For some reason, my very under-performing brain determined that particular station was not near our hotel, so I quickly called an audible. We huddled up, and I changed the plan to disembark at the Lyon airport. My genius logic was we’d have no trouble getting a taxi there, otherwise we’d end up who knows where in France. Except we wouldn’t have, because we’d have stopped at the main station in Lyon, and had our choice of any number of taxis. That’s a mere detail. We had our luggage (yes, six or seven bags, and yes, mostly mine), which, thanks to my reserved seating oversight, was many cars away from us. We had Tammy, who thought this all was quite amusing. Chris leapt into action, weaving his way through the aisle, past travelers young and old, leaping over bags (and perhaps some small children) to get to our luggage. He was to throw the bags off the train, and I’d, um, GENTLY escort Tammy to the platform. As Chris made his way to our (my) luggage, he turned and uttered a profound phrase that, to this day, he still utters from time to time—“No changing the plan!!!”

Funny thing about most airports late in the evening—there always seems to be a shortage of taxis. I’m sure we only waited thirty minutes. Maybe forty. Forty-five tops. But, most critically, my luggage was all there, safe and sound. Oh, and Chris and Tammy had their bags, too. Now off to the hotel … we hoped.

Thank you, Scott, for sharing your insights. We look forward to more “Dispatches” soon!

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