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Home My Alzheimer's Journey

My Alzheimer’s journey: A train trip gone wrong

"Every time I’m reminded of my Alzheimer’s, I’m left with tears dripping down my face."

Phil Gutis by Phil Gutis
September 6, 2019
in My Alzheimer's Journey
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Once again, the day was going so well. I had scheduled a meeting at the Delaware Valley chapter of the Alzheimer’s Association in downtown Philadelphia and rather than fighting traffic, I decided to do something different and take a train from a nearby town into center city.

Yes, there was a slight hiccup when I arrived at the station and found the tiny parking lot full and could find no signs for additional parking. But I placed a quick call to my husband and learned of an additional much larger parking lot on the other side of the station.

I parked with plenty of time to spare, took a picture of a katydid that amusingly also appeared to be waiting for the train and posted the picture to Facebook. I saw no sign of a place to buy tickets at the station, but confirmed with another passenger that you could buy tickets onboard and boarded the train when it arrived right on schedule.

After a quick and painless trip into the City, I got off at my scheduled stop, found my way outside and set the address on my phone’s GPS. Of course I started to walk the wrong way — as I always do — but a quick question to a construction worker got me pointed in the right direction and I took a nice 15-minute walk through the Independence Hall section of Philadelphia.

My meetings went well (more on those in a future journal) and a few hours later I was back enroute to the train station, guided by my trusty phone.

All good. I arrived at the station with about eight minutes to spare, grabbed a quick snack for the ride and hopped onto the train. I got lost in texts and my Facebook feed and phone calls and suddenly I realized that I must have missed my stop because I heard the conductor announce the next station as Trenton.

Cursing myself for being a space cadet, I quickly told myself that it wasn’t a big deal. I’d get off at Trenton and catch the next train back for one stop. Annoying but certainly not a big deal.

A ticket agent told me that the next train toward Yardley — where my car was parked — would leave in about 20 minutes. No worries, I’m thinking as I settle onto a bench. I’ve got this.

Except the next train pulls up and it’s a completely different line. And an impatient and annoyed conductor looked at me like I have three heads. The only way to get to my stop, he said, is to go all the way back into Philadelphia and switch to another train.

How can this be? How could I have gotten to Trenton station when the train line I was on didn’t even go there.

By this time, I’m beginning to panic. And panic never helps with clear thinking. All I can think is that I really don’t understand how I got to Trenton Station and how am I going to get back to my car?

Phil Gutis

At this point, I’ve run out of options and I call Tim. He can tell that I’m this close to tears and a panic attack and quickly assures me that he’ll jump in his car and come get me. (Trenton is about 40 minutes from our house.)

As I sit on a bench waiting for Tim, I’m still trying to figure out how I got to Trenton Station. My train was supposed to go to West Trenton, miles away from where I’m sitting in Trenton Station.

Later in the day, once I’ve gotten to my car and driven carefully home, a friend sends me a text to follow up on a conversation we had while I was on the train. I tell her what happened and point her to the Facebook post I wrote about feeling like I was in an alternative universe where trains stop at places they’re not supposed to be.

Her text response: “I’ve gotten on wrong trains before. Don’t beat yourself up.”

At the time, her text made no sense. Even after her cue, it never occurred to me that I could have taken the wrong train. I was absolutely convinced that it was the train that was in the wrong place.

And that’s how I went to bed. Mystified. More than a bit terrified. How in the world did I end up in the wrong station?

And that’s how I woke after up after a fitful sleep. It wasn’t until after I finished breakfast and sat down to start writing this piece that the light bulb went off.

Ah, yes, my stupid brain thought. I was on the wrong train. That’s why I “missed” my stop. That’s why the train ended up in the “wrong” station. That’s why the conductor looked at me like I was demented.

Unfortunately he was definitely onto something. I have to accept the idea that I am indeed headed in the direction of demented.

Every time I’m reminded of my Alzheimer’s, no matter how often it happens, I’m left with tears dripping down my face.

It’s just that I typically feel so fine. The meetings in Philadelphia let me exercise the communications skills I built over my career. It felt wonderful to be engaged in strategic thinking again.

And then a train ends up in the wrong station and I’m seconds away from a panic attack because I can’t figure out how I got here and what to do next.

This all happened on Tuesday and as I’m writing this journal on Wednesday, I’ll admit to being deeply shaken. It was so very tempting to crawl into my bed this afternoon and to disappear into a blissful sleep.

But I wiped away my tears, steadfastly ignored my bed and slipped some sneaks on. Retail therapy was definitely needed so I hopped into my car and drove to an area nursery and bought a few plants.

Can’t say that I feel great yet but at least I’m moving forward.

 

 

 

 

Phil Gutis

Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.

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