Today’s blog post is the first 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.
Tammy Hardy lost her battle with ALS in 2008. She was 39 years old. She was diagnosed with ALS six years earlier, at the age of 33. After her diagnosis, she had a cadre of caregivers, including her sisters and brother, her parents, her partner Scott Liniger, and his parents and family. Since her death, Scott has been a member of the St. Louis Walk To Defeat ALS committee, and participates and fund raises for Walk Team Tammy Hardy, along with Tam’s sisters, Kelly and Keri (and lots of family and friends).
By Scott Liniger
I was an ALS patient caregiver for my partner, Tammy Hardy. Tammy battled ALS for six years. I’m familiar with the challenges of dealing with ALS, and I know there are incredible hardships and frustrations. But I don’t want to focus on the bad stuff. There are plenty of stories and articles about that. It’s been over 12 years since Tammy died, and while the memory of her struggle is still vivid, I’d like to share some of the crazier, sillier, and, dare I say, funnier things (at least to us) that happened along her journey. Things that, when I reflect upon them now, make me smile or laugh. I should probably add that Tammy would approve of these stories, particularly the ones that make me look foolish, which it turns out most of them do. I’m hoping to generate a few stories about our experiences, so this may be the first dispatch. And hey, it could be one and done. Like facing ALS, we’ll be flexible and see how things go.
While dealing with ALS is difficult, it’s also possible to experience some joy along the way. I appreciate everyone deals with things his or her own way. For us (including our extended network of family caregivers), it was about keeping hope in spite of the reality we were facing. And it was about finding humor—sometimes rather darkly—where we could find it. So with that said, I wanted to share one of our experiences that was actually a nice bit of fun: That time we went to Venice, Italy.
Hey, You Know What? We’re Going to Venice!
Tammy apparently had always wanted to visit Venice. I truly don’t recall that ever coming up in any prior conversations, but hey, the girl wanted to go to Venice, so we go to Venice. As the timing worked out the way it did, we essentially threw together our itinerary in a very short time. You’ll be able to read more about this in my upcoming travel tips book, How To See Europe In The Most Stupidly Expensive Way (editor’s note: NOT a real travel book). Rick Steves would have been unimpressed, but as we know, life with ALS can make us adjust our priorities. For instance, it was NOT a priority to understand that one could get from Milan to Venice on a train, as opposed to renting a car to drive from Milan to Venice, and then paying to park said rental car while one was in Venice, then taking the car to the airport to drop off, and then take a taxi to the train station for the next destination. Just minor details. But I digress.
Now, in our (ok, my) defense, we did plan one thing rather smartly. We had a friend, Chris, who’d walk through fire for us. He would expect a nice dinner for the trouble, but he’d have no questions about the walking through fire bit. We invited Chris to come along to help with the logistics. Fortunately, he had nothing better going on, and the call of the free Italian dinner was strong. At this point, Tammy was still able to get around with a wheeled walker. She used one that had a fold-down seat, so in a pinch, it could be used as a wheel chair as well (I’m sure those pages were missing from the manual about that type of usage). When she was a passenger, she’d face the pusher—usually me. This way it was easier for her to yell at me when I hit bumps. The plan was Chris would help me navigate Tammy through Venice. One other note of importance—Tammy was 5’2”, and not much over 100 pounds. I haven’t been either of those things since I was five. As such, when push came to shove, I could heft Tammy around. I’m not suggesting that this was the preferred course of action, I’m just stating the fact that I could, and often did. With this as our fallback plan, we felt pretty good about being able to get around just about any situation.
Venice is a lovely city. There really is no place like it. We managed to visit sort of off-season with a bit fewer tourists, and a bit less hot and stinky, and it wasn’t crazy crowded. This turned out to be a good thing, since there are lots of narrow roads. Made of cobblestone. Uneven cobblestone. It’s these sort of details that seem to really catch you off guard. Now, pre-ALS, Tammy would admit she wasn’t the most graceful of humans. ALS upped (lowered?) that game. With walker in tow, we navigated the narrow, very cobbley-stoned streets of Venice, at a very slow pace. Now, before you say it—yes, I was in fact aware of the canals. I mean, come on, it’s Venice. I perhaps didn’t realize just how many canals there were. Let me just say that there are a lot. Truckloads. Way more than one. Also, not many ramps. Or smooth surfaces. It seems ancient, medieval cities have not yet got the memo and aren’t necessarily updated with all of the modern conveniences (to be fair, our hotel did have a lift, and everyone was very accommodating and helpful). But there are MANY little bridges with many steps over the canals. Many. Truckloads. Chris and I quickly worked out our plan, and I must say, the Bolshoi Ballet would’ve been impressed. Tam would walk to the foot of the bridge. I’d pick her up (I’d love to add “always carefully” but if I’m being honest, I’ll stick with pick her up), Chris would grab her purse and the walker, and head over the bridge like Patton storming the Bulge. I would follow in his wake, Tammy in tow. It was exhilarating. It was exciting. It was fun. It was exhausting. Wait? Another canal? I don’t know how many canals and bridges we crossed. Many. Truckloads. Actually, I don’t remember anything else about Venice. I’m told it’s a very charming, lovely city. But that place definitely has a lot of canals. And Chris certainly earned his dinner.
As I think back on that trip, and crossing all those silly bridges, it makes me smile. We knew we had many challenges ahead of us, but, if you’ll pardon the metaphor, we knew we’d have to face them one bridge at a time. And with the help of family and friends, that’s what we did.
Thank you, Scott, for sharing your insights. We look forward to more “Dispatches” soon!