The Hillhouse

The new year, thus far, has been an unrelenting game of good news/bad news. Somehow, in spite of some personal sorrows we weathered in the first weeks of January, it seemed that things in general were looking up. The Studio appeared to be crossing a line into new territory; I was starting to book events that had been on my mind for months. The time was finally here, and things were happening. I was making connections, meeting people. We were getting press – we were in the paper and on the news. Poised for some exciting things ahead. And yet, here we are today, so close and yet so far…

At this writing I am so very close to wanting to pack it all in. Forget the whole thing. Park my kid with a host family in town, move to Florida, get a gig house sitting or dog walking and just never come back. That idea is really appealing right now. No more snow, no more meals to make, no more food stamps to run out of, no more furnaces grinding to a halt in freezing temps, no more piano students cancelling in the 11th hour, no more venue emergencies, no more having to go to my mother for the money to fix it all. (At the age of 54 you’d think that shit would be behind me. Apparently not. It’s incredibly demoralizing and has me wondering if a job at Walmart might not be a more dignified situation.)

Not too long after we lost our ancient rooster Bald Mountain, an unidentified neighbor dog came through our property, killing five hens (two of whom were elders and quite dear to us) and injuring one of our laying ducks. She was hurt, but not so badly as to warrant butchering her – so we took her to the vet. Having acquired my very first credit card in the nine years I’ve lived here (when your ex leaves you holding the bag on family credit cards but you live on welfare, it makes starting over a very lengthy process) I was in a position to actually take an animal to a vet and pay the almost $200 in care and meds. A small financial setback, but our duck healed well and now stands to hatch out her own ducklings this spring. So it was a happy ending. Sort of.

As nature abhors a vacuum, apparently so too does an unused credit card balance; I found myself making an unplanned, last-minute trip (the timing and short duration of which made it unusually costly) to Chicago in order to visit an old friend who was diagnosed with a rapidly advancing, early onset form of dementia. (It’s called FTD for short, there are two links below to videos which describe the disease in more detail.) I’d told her I’d visit in the fall, then again made the promise at Christmas, and most recently I suggested a summer trip. In reality there would never be a good time to go, and it appeared that my friend as I’d known her was fast-disappearing. So I chose the winter school break, when I could leave Elihu alone for a few days without concern, and I’d be back by the time we held our Friday night dance performance at The Studio. The day before I was to leave, I came down with a fever, and during my two-day trip (the most expensive two days of my life since I moved to New York nine years ago) I completely lost my voice. So there I was, in the company of my oldest and dearest friends, nearly unable to speak, and physically wrecked. It didn’t diminish my happiness at seeing everyone, but I can’t say it was a pleasant experience. I was lucky to have the use of a friend’s car, and luckier still to experience some unplanned visits and serendipitous meetings, so at its core, it was a successful trip. Just not a very comfortable one.

And I got to spend two days with my friend, a woman who I will most likely never see again. And even if I do see her again in this lifetime, she won’t be herself anymore. Whenever my mother complains about the expense of an outing, the thinking I always share with her is that she’ll always remember the event, but years down the line she won’t remember the bill. I also had to remind myself of this over and over. Visiting a friend is more important than money. The time was now, and I did what was right, I know it. But still. It’s gonna take a few years to knock this balance down again. Yes, I am feeling sorry for myself. I’ll get over it. Just not today…

While I was visiting with my friend, on that rainy day in Evanston, Illinois, I got a call from the woman who teaches yoga at The Studio. The power in the building was off. That was strange; I’d gone to great lengths to make sure the electric bill was paid in full, that everything would run without incident during my three-day leave. But no, the main breaker had been flipped, and nothing was changing. I was whispering with great difficulty over the phone, my throat already on fire, my stress level rising as I realized I needed next to call the electric company and navigate the automated system on 10% battery, and without a voice. Shit. I bounced back and forth down the long hallway of my friend’s new downtown condo, visiting with her while on hold, then retreating to the bedroom to explain my situation to the customer service folks. After some time and several different calls, I was able to arrange for a lineman to assess the problem the following day.

The next day I also juggled personal visits with more follow-up calls; apparently no one had been to the property yet as they’d promised. And my mother, she had thrown herself and a last-minute solution into the mix in the form of a rented a generator to power the place (we still needed to find an electrician who could tie the damn thing into the main circuit board) for the rehearsal and subsequent performance. My mother was trying to fix a situation which needed much more than a band-aid approach. Missing the forest for the trees, she was trying to revive a non-revenue earning event at no small expense. She was so persistent, and I was in such physical discomfort and so unable to even speak, that countering her on the phone was infuriating. There I was, at the iconic Blind Faith Cafe for the first time in over a decade, with a waitress asking for my order, an overly enthusiastic friend trying to interpret for me, and my mother telling me I needed to confirm the generator rental NOW. I don’t relish hanging up on anyone, but there was no other out. I told my mother to CANCEL the damn generator, and pushed the red button. Done, done, done. I was in no place to keep this event together. Even if I hadn’t been sick, I was 900 miles away. Not a good idea. I don’t like giving up, but sometimes ya just gotta wave that white flag.

Before I’d gone to Chicago, I made sure to have my hair done. Karen, the woman whom I was going to visit, had been a very talented hairdresser, and if she would resonate with anything at all, it would be my hair. So I had my regular hair gal Wendy pimp my ride. The highlights were over the top, the curls beyond natural and the lift almost 80s music video ready. I wasn’t a huge fan, but it wasn’t for me anyway. I was thrilled that Karen loved my hair. I was thrilled that she was still recognizable as herself. And I was thrilled, that after an eight year hiatus, she and I and some dear friends were going to meet at a restaurant we’d been going to together for over twenty years. Old home week was on. It was why I had traveled so far…

I was the first to arrive at the place, and somehow it seemed different. Ah, but that’s what nearly a decade can do, I thought to myself. Shortly before we convened at the weary-looking table we learned the reason: only four days earlier our pals Tony and Vatsana had sold the thirty-year old business. If only I’d come out a week before. If only, if only…. All we could do was laugh. Poor Karen, who partly due to her condition, partly due to the anticipation, had been repeating “Crispy Basket” all afternoon, continued her refrain, only now it took on the tone of a small, sad child. “No more Crispy Basket” she said, laughing, but still sounding rather pitiful. In the end we all had to laugh. The whole situation was ridiculous. No more Panang Beef the way only Vatsana ever made it. And the cucumber salad? There was no redeeming it. The magic was gone. I couldn’t help but think how this was one of those defining moments in all of our lives. One of us was on a fast-track to death, none of us was looking any younger, and never again would we gather together around a table, all of us together.

Karen was still able to have a laugh over her situation, and by the end of the night we had created a new ‘in’ joke which would surely last… She and her sister Debbie had recently gone to the hit show Hamilton and during intermission they’d gone to use the bathroom. This was before either woman was aware of the extent to which Karen was prone to wander, and by the end of intermission, when her sister was nowhere to be found, Debbie sent her a text. “Where are you?” she asked. “I went to use the bathroom” Karen texted back. “Where?” her sister asked, to which Karen very matter-of-factly responded “Target”. Apparently, finding the lines too long, she had meandered outside and down the street, ending up at nearby Target store where she used the bathroom and then dutifully waited outside for her sister. And so for the rest of the visit, a trip to the bathroom was referred to as “going to Target”. Good to be able to laugh about it. It’s a frightening enough situation to warrant tears, but what good would it do to cry?

“I just want to know if you’re worried, if you’re stressed. How are you feeling? Are you scared?” Although I’d intended to get a little deeper into my inquiry of her experience, that was as far as I got. “Liz, do I look stressed? No, I’m not stressed. I’m not scared. It’s just weird is all.” We talked a bit more about the strangeness of it. I was secretly relieved that the very disease itself had robbed her of the ability to fully comprehend the severity of things. She had taken on a certain childlike quality which seemed to take the edge off of her reality. Karen was in a bizarre place to say the least; she would warn me of her inability to filter her language and impulses and ask me to intervene. She knew when she was about to approach a stranger with an inappropriate question, she knew when the impulse to chew something grew too strong and so her teething toy needed to be within reach lest she gnaw her debit card beyond use (which she did while I was there). Again and again I asked if she was scared. I didn’t want to lead the witness, I just wanted her to know I would be there for her as best I could.

“You’re such a country girl” Karen would say many times that afternoon at her apartment. She’d laugh at my wide-eyed assessment of all the change that had taken place over the past few years. Lyfts and Ubers swarmed all around us on the streets and appeared like tiny bugs on our phones, ready to drive us across town without so much as a bill passing hands. People were everywhere, lobbies were huge and involved falling water. There were crazy themed restaurants everywhere, and there were as many brown people as white. It was probably a good idea that I’d taken this trip. My little cocoon in upstate New York did not present an accurate glimpse into modern urban life. “Yeah, I may be a country girl, but you’ve still never ridden the el!” I joked back. Indeed, my friend had been a real Jewish American Princess, complete with a two seater sports car and folks who wintered in Boca. “Yeah, but you’re still such a country girl”. Karen always had to have the final word. I remember thinking at that point that she was probably right. This was not a world to which I would choose to return.

We spent a rainy Wednesday afternoon inside her beautiful new condo with its floor-to-ceiling glass walls watching TV, playing her keyboard, singing and looking at photos. She was adamant that we go across the street to World Market and pick out the perfect frame for a photo I’d sent her of my father and her at the piano in our old Evanston home. Karen loved my dad. And he had loved her. They flirted in French and cracked each other up. “I kiss everyone goodnight, like this” she said, kissing her index finger and placing it on the photos of friends and family members that sat atop her bureau. “We need to have Bob up there.” By the end of our day together, a beautifully framed picture of Karen and my father rested among all the others, and we were both very satisfied. I couldn’t think of a more perfect ending to our visit.

The afternoon finally turned into evening, and although the previous incarnation of my friend would never have admitted to such a thing, this woman told me several times that she was getting sad as my departure grew closer. I was too. Never a good time for goodbye, especially the kind that truly might be the last. But thanks to my true and spazzy form, the poignancy of our goodbye was somewhat diluted; once by my returning to leave her my CD, and secondly by a crazed digging through my bag to find my hat – which was loud enough to have Karen open the door and check on me. Finally, when the elevator arrived, she turned and closed the door without waving. It wasn’t really goodbye, just see ya. Better that way.

The el squeaked its way through old, familiar neighborhoods. Nighttime was always a good time to ride the train. Lights sparkle everywhere and interiors become tiny tableaus. I’d noticed on this trip that apartments were all becoming so über hip. Growing up I remember shabby apartments, one after another. Now it seemed that the entire city was made of upwardly mobile thirty-somethings. On the train another adult also unable to censor his speech appropriately made a loud observation which made me laugh: “I’ll bet the train will lose a whole bunch of millennials at Belmont”. There sure did seem to be a lot of em.

I’ve always loved to fly, so this rare opportunity to experience commercial flights again had become another great disappointment; on the way there the entire flight had been above the clouds, and my seat was on the aisle. Upon returning, I found myself in a middle seat, which might have been fine, only there was no window at the end of the row. In all my years of travel I have never before been in a windowless row. My head cold made the ascent the most miserable I have ever experienced, so it really didn’t matter anyhow. This trip had been about seeing my friends, and that had been accomplished. The quality of my flights wasn’t really the issue, expensive though they may have been.

The two-day whirlwind of $12 airport beers, visiting old friends and eating out at favorite restaurants was done. I relished the final moments of the flight, the landing, the awesome power of the engines braking the craft. I savored every moment I was not yet back. A horrible feeling of dread filled my gut when we turned the corner and I saw the lights of the tarmac. The detour was over. A muddy driveway piled high with a winter’s uncollected garbage, a fourteen year old boy who needed to be fed, and a venue without power awaited me at the end of my eight-hour commute.

It’s been one week tonight since I got back home, and shit hasn’t stopped. Still need to cancel a few more events, have yet to ascertain how and why the power cut out, and my poor kid has been really sick for the past two days. I just got the dishwasher repaired with the last remaining available credit on my ‘new’ card, and all but three piano students have stopped taking lessons. But there’s been good news too. Not without a hitch, though…

A very nicely produced piece on The Studio appeared on the local news only a few days after we lost power, and here the irony continues. Just the day before it aired I had discontinued my cable service in order to save some money, so I wasn’t able to actually watch it live on TV from my house. Oh, the timing. And the piece itself is lovely; it pays a very sweet tribute to my dad and to my mom, it shines a bit of hope on the future of the venue, but sadly when they’d come out to interview me I was at my annual heaviest, and on camera I read like Ann Wilson in the early 80s. Deeply embarrassed, I’ve had a very hard time seeing the generous shares and comments in the Facebook world. I can’t bear to watch it ever again. I need a serious do-over. I’m down eleven pounds since the interview, and my personal goal, if nothing else, is to establish some online video presence with some short music vids to help redeem myself. I’m very nearly on the bottom of my personal barrel right now. So not where I imagined myself to be in this new and until now, promising new year.

Entropy. My kid likes to remind me that’s the direction we’re all headed anyway, so don’t sweat it too much. It is kinda like the great playing field-leveler. Yeah, we have our glory years (if you’re anywhere from 20 to 40 as you read this, consider yourself in the undeniable sweet spot) but then the physical shit eventually hits the fan. I’m almost at peace with that idea. Certainly closer than a year ago. I’m slowly acquiescing to my mortality. It feels as if I still have a small chunk of work yet to do here on this planet; the kid’s not fully launched yet, and I do have a vision for The Studio which at the very least I’d like to see set sail before I’m done, and yes, my ego would like to see the blog turned into a book. (However I’m wise enough to know that nobody truly cares. And please, don’t protest, I get it. I sat next to an author on the plane who provided me another reality check on that count: I gave her what I thought to be a pretty compelling elevator pitch, and she just smiled and said “Everybody has drama, and lots of people write well.” Nuff said.)

“Your fingers are freaking me out” Karen said as she stared at my knobby distal joints. “Yeah, I really don’t like having arthritis this bad” I had responded. A moment passed. Karen looked at me, and she seemed tired. “I’d rather have what you have.” Another space landed between us. “Yeah,” I answered. “I know.”

Guess it’s time to quit griping about all the stuff I don’t have, and instead, concentrate on all the things that I do have. I guess it’s time to start writing that new book…

 

Link to WNYT Channel 13 piece on The Studio

Link #1 to shorter video on Frontotemporal Dementia

Link #2 to longer video on Frontotemporal Dementia