2022 The Journey
Last New Year’s Eve, I was at my parents’ apartment in Brooklyn with our two year old spending time with my ailing father and avoiding my husband who had been going into work all week while the Omicron variant spread like wildfire throughout the city. It was a tough decision, but one we agreed on making. It was a strange week, like the week between Christmas and New Years always is-kind of surreal, dark, cold, clocks don’t matter, getting over the holiday madness, and waiting around for New Years to come and go so life can start back up. This year was particularly strange, not just because Omicron was nuts, but because my father was in the thick of a year and a half of torture, a torture that seemed like it couldn’t be stopped and a torture that was a veritable mystery to all of his Doctors and those who loved him.
Starting in March of 2021, my non smoking father was diagnosed with stage 4 lung cancer that had spread through his lymph nodes which also affected his vocal chords and two months later his chemo treatments miraculously worked and virtually cleared out all of the cancer. In that two month time span, completely unrelated, he underwent brain surgery to fix a bleeding hematoma. That summer, while he convalesced, we believed he was fatigued by all that happened to him, but we soon realized this wasn’t just side effects of chemo when his legs began to buckle when he tried to walk and he could no longer urinate on his own. Doctors were on the case and believed it had to be his immunotherapy treatment. In the month of August it became so difficult for him to swallow, he who had always been a slim and highly energetic man with a famed appetite, had become emaciated. He didn’t speak, he hardly ate and he could hardly stand on his own. He had a three week stint in the hospital, he weighed under 100 lbs and my mother, myself and my brother agreed to have my father put on a feeding peg, it truly became to the point where it was that or let’s watch him starve to death in front of us. At this time we beleived that this was a case of immunotherapy attacking his body, and his team of oncologists hoped that it could still possibly be reversed. If anyone could bounce back, my father surely could.
That October I began to spend a lot of time in Brooklyn with my father, helping my mother nurse him, helping him with physical therapy and having my two year old daughter spend as much time with him as possible. She was six months old when the pandemic began, and her life so far had basically consisted of hanging outdoors in our East Village neighborhood or spending time with my ailing father in Brooklyn. Not your typical first couple of years, but she’s a very happy little person, I’m happy to report. My brother was always there on his days off, so it was nice to all be together, but also mentally draining on so many levels. We would do these exercises with dad and praise him if he could move his leg forward 6 inches in a seated position. Meanwhile, less than a year before that he was still on his feet cutting hair 10 hours a day, loudly arguing and laughing with all of his beloved customers. Now if he said a sentence and moved a muscle it felt like a victory. He no longer drank water, my mother fed him a liquid formula through a feeding peg in his stomach three times a day. We hid from him when we ate and tried not to cook anything that smelled too good or make too many sounds that we were enjoying what we ate. He just sat there, watching tv, never complaining.
There was another stint in the hospital around Thanksgiving, more treatment to try and reverse all of these horrors. He just got weaker and weaker. We hatched this whole plan that my mother would drive him down to their house in Florida and that I would come down there with Liana and spend an extended amount of time there in January giving him physical therapy, he would be able to go outside in the backyard and it just would be so much better for him, my brother was on board to spend time there too. We truly believed there would be a turning point, there had to be.
So, lets get back to Christmas week. I’m hunkering down there in Brooklyn all week and I’m watching my Dad, watching him weaken more and more, and I say to my Mom one night, there is no way in hell you’re getting in the car with Dad and driving him down to Florida by yourself. You two will never make it. I thought about those cargo bags people put on the roof of their cars for extra storage, and said lets buy one and Liana and I will have to come with you. My daughter, a two year old Manhattanite who hadn’t ever spent more than about 45 minutes in a car in her life. My mother agreed, we bought the cargo bag online one night and our Thelma and Louise plan was hatched. We would leave a couple days after New Years.
New Years Eve, my throat begins to bother me and when that ball dropped, my daughter is fast asleep, my husband is by himself on our couch, my parents are hugging and hoping for a better year and I’m sipping champagne knowing full well I must have omicron. Happy New Year!
I spent those first few days quarantined back home in my bedroom, my husband and daughter avoiding me, my dad ended up getting a spinal tap on the tenth of January, and I lost my sense of smell and taste, but I was testing negative so we decided we would start our journey on Wednesday January 12th. My brother attached the cargo bag to the roof, we loaded it up with all of our things that we wouldn’t need until we arrived in Naples, and filled the backseat with the necessities of a two year old and trunk with the medical necessities for my father. What were we thinking…
A few miles into the trip, we were on the Verazzano Bridge, a few wintry gusts of wind hit the car and I could feel the cargo bag above my head sort of shift. I spend the whole of that road trip not only worried for my father and daughter but soooooo worried about that cargo bag flying off the SUV, and wreaking havoc on 95 south. The bag seemed to stabilize, and our first stop was a rest stop in Delaware. Sidebar-Let me stress that we were coming from a major Covid Manhattan bubble. We had been in the city for almost two years without leaving and everyone was still wearing a mask to go anywhere indoors at this time. I knew that the trip down south alone, as we went further south was going to be a culture shock and that my daughter was going to see a lot of new things that most people take for granted-a drive thru, a parking lot and a gas station, just to name a few! End bar- So, it ended up taking us one and a half hours just to gas up, change Liana’s diaper and for my mother to wheel my father into the family bathroom and change his diaper. Then we still had to get Liana back into the car seat and my dad into his seat. This became harder and harder as the trip went on, I believe at that first stop he may have still been able to stand on his own for a second of two before helping him in.
We start driving again, discussing how every stop can’t last that long because we will never make it. We didn’t have a place to stay but we had written down some hotels off 95 that we could stay in whenever we felt we needed to stop. We knew we wanted to end up in Virginia, somewhere just past Roanoke. We ended up pulling off the road for my dad to be changed, for my mom to feed his peg and so we can eat. We ended up getting fried chicken sandos from, let’s see what was it called…Freddie’s Steak and Custard? Something like that. Liana had a burger and fries and oh, was it depressing to eat this food in the dark car in the parking lot while my poor father just sat there. We got back on the road, and this was another hour and a half stop when all was said and done. We drove some more, and I think we decided to get a hotel around 9:00. There were no rooms at the Inns-my brother was helping us out by calling hotels and they were all booked up, probably because all the flights were cancelled because of Omicron and a lot of other people probably decided to drive to their destinations.
So, we end up at a Hampton Inn in Petersburg, Virginia-the last available room. We made several trips, carrying in my Dad and Liana, our miscellaneous supplies and overnight bags. Wait, where is Mom’s overnight bag? After searching and searching in the dark parking lot we come to the realization that my brother and I packed her overnight bag up into the cargo net, that was packed just so that we were in no way able to get the bag out without undoing the entire thing which was out of the question. So, all Mom had was the clothes on her back, no clean clothes, pajamas, toiletries, contact solution, etc. So once she took that blow but also saw a bug in the shower, she was done with the whole situation. My poor father fell hard on the bathroom floor while trying to go to the bathroom, and we had to cover him up and get him to the bed. Any strength he possessed prior to the first leg of our journey vanished. Then and now I find it far too painful to try and put myself in his shoes, to wonder what he was thinking. How he felt being completely helpless, he who had helped me for the first 40 years of my life, he who was the first person I would think of if I needed help in any way. Not in a spoiled way, because if he wan’t my father, he still would have been the first person I would ask for help because he was the person who not only helped you, but truly wanted to help you, and not because of obligation but because that was who he was. I don’t say this because he has passed away and I want to create a saint. He was a saint. He was everybody’s saint and everybody’s friend. That night was a very long night. I was in one bed with Liana and Mom and Dad were in the other bed right a few feet away from us. He had so many issues it was always just intermittent sleeping, 15-30 minutes here and there, so I think the three adults mainly laid there struggling with their sleep between wakes.
When we woke up, I took Liana down to get the ‘free’ Hampton Inn breakfast, we brought some up to the room for Mom while she prepared and fed Dad for the road. I had given Mom my pajamas the night before so she would at least feel a little refreshed when she put her clothes from the day before on, meanwhile I slept in my clothes and I put on a new shirt, I guess out of guilt for the overnight bag in the cargo bag debacle-needless to say, this Fab Four wasn’t the sanest looking bunch. We got on the road around 10:30. So late! But it was the best we could do. I got us gas, and we were on the road. We drove across the border of North Carolina and Dad said he had to pee. Mom came up with this new plan that when Dad had to pee or stretch his legs (he had to stretch his legs most of the times we stopped since he couldn’t move them on his own) we were going to try getting off at an exit and finding a spot on the side of the road to hang Dad out of the car, stretch his leg and try to get him to pee into his piscatuna (God I still want to know what we should call it in English, there’s obviously a technical term for it) instead of making a long stop at a rest stop. I swear that first time, I thought I was going to hear the cock of a rifle behind me as we held Dad up to stretch his legs and have him pee. So many things go through your head when you’re in the middle of nowhere holding your Dad up with all your might in the Deep South while you’re wedged between the backseat and your daughter’s car seat. Is this moment going to shape her forever? If this didn’t do it, the next leg certainly did…
We were beginning our approach to ‘South of the Border’, AKA, when North Carolina turns into South Carolina. We were maybe ten miles or so from there when we began to see break lights and as we came to a full stop, we saw plumes of black smoke started to billow into the air. My sense of smell was coming back because I could definitely smell what was clearly some sort of explosion a few hundred feet ahead of us. After about 30 minutes we began to really worry and wonder because this was clearly not your normal traffic jam, or even your normal car accident. At some point my brother, his wife Katie and my husband were googling and researching what happened from New York, while I was walking around outside with Liana so she can get out some of her energy. Two hours went by and we knew if would be pretty bad when we finally were moving and we drove by the wreckage but we never would have expected what we saw. A charred 18 wheeler, a couple of totaled cars, their belongings strewn across the highway, I won’t go into detail, but it was beyond what I ever had seen, or my mother and father had seen and it moved us all to tears. Liana was the furthest from it in her seat, but she saw and heard enough to continue to talk about it for months. I immediately questioned our luck, our lives. Why should we have witnessed this?? But also, thank god my father kept stopping us over his discomfort, maybe the last stop saved us from that wreckage. We were pretty shaken up as our journey continued. We lost almost three hours and soon found ourselves ready for dinner and a feeding for my Dad. We had Zaxbys chicken sandwiches for dinner this time, and got right back onto the road since we were so behind.
We drove through North Carolina and as we made our way into Georgia it was already dark out, and while my mother and I were exhausted we had this growing tension and crazed idea that we should go the whole way without stopping. At this point I must inform my reader that my mother and father, back when he was healthy, made this trip twice without stopping. This is the sort of thing that defined my mom and dad but until this point, I was having none of it. I knew it was not safe and not wise. But somewhere between keeping my daughter and father comfortable and the time we lost on that fatality on 95, I began to cave and agree with my mother. She is not the type to stay in a hotel when she can be in her own bed, and I really really wanted to get this all over with. That damn cargo bag was making some new noises and had shifted some more, so I told her that if we could secure the bag, gas up and get some caffeine in us, I’m game for her ridiculousness. So we pullover at an empty, dark Georgia gas station, and buy the only suitable duct tape and cherry coke we can find and I reinforced the car and cargo bag as best as I could, with what I could. What was Dad thinking? He never told us, we never knew. We got back into the car, and went for it. Vin, my brother was at work and texted wanting to know where we were, I sent him the iconic thelma and Louise hand clutch gif.…He wasn’t too happy to receive that gif. Mom and I went off the grid…we drove into Florida, we were only a state away-but as anyone who has driven to Naples told us, that last leg is the worst…How long would liana really stay asleep for?? How long could Dad sit there?? He was still basically skin and bones, and still as always, at our mercy.
Five minutes outside of Jacksonville proper, he wanted to stop again, and he told me he wanted to stay in a hotel. I had to talk Mom down. She wasn’t happy and I completely understand why, but she pulled over and we found a hotel. It was a decent place and when she gave up on being mad, we all got our best night of sleep. The next morning, I went outside alone to pack up the car and felt the warm sun. I closed my eyes, breathed deeply and let the warmth and quiet envelope me for a quick moment of peace and solitude before loading the car up with some of my father’s gear. As I approached the car, I looked over at a dumpster across the way in the parking lot and came eye to eye with I believe I counted 11 vultures staring at me. What exactly did this mean? I’m not sure. I’m pretty sure I laughed, and when I think back on this journey, it’s still funny, since, you know, they didn’t attack me.
We loaded into the car, and were on our way, Naples or bust. This was a good day, our easiest by far. I think it helped that my Mother and I had perfected our pit stop system, like a two person pit crew, she would pullover and we would jump out of the car, I would grab his walker from the trunk, she would get Dad out and standing up to either pee or stretch or both, while I would be helping to hold him up from behind him, crouching on his passenger seat. I would love to know what onlookers thought of us! My Dad slept most of the way that day, as did Liana, and when she didn’t sleep, she was very good. The entire car ride, she was very good. Laid back, easy going, and comforting. It took six hours, and in a very surreal way, we found ourselves entering my parents’ neighborhood Naples. It wasn’t home home, as this was a place that they purchased January 2020 and was built for them durning the pandemic. In reality my parents had only been there twice before he was diagnosed. This place was their retirement dream, all of our dreams of the future, spending weekends, vacations and holidays there together. We just were so happy to arrive in one piece. Out of the cold, into the sun, out of their constricting multilevel Brooklyn apartment.
We spent over a month down there. Dad never regained any strength. Darin had shipped some exercise and massage gear down there. It was hardly used and as time went by it was used less and less. My brother, his wife, my grandmother and my husband came down. There were fun times, happy times, ‘core four’ times watching Cobra Kai. Dad loved watching Italian slapstick movies, spaghetti westerns and the World Poker Tour (which is somehow highly addictive). He was always quiet, never himself and he never complained. As his condition worsened over time, and after we took our long three day trip back up north in February, things worsened. He got covid, he went into the hospital in March for a what now was clearly a last ditch effort to help retract his ailments. That stint almost killed him and we knew we wanted to get him back down to Florida. I asked him a couple of times point blank and every time I asked him if he wanted to drive or fly it was the same adamant answer (hard to come by with this version of dad): I want to fly…
At the end of April, before Dad’s 71st birthday, we flew down there. There was a lot of red tape, special services, but it was really impressive how the airline helped to get him down to Florida and with such ease compared to what we did on our way down ( and up ). We were in the front row of the plane: Liana at the window, me in the middle, dad next to me on the aisle and mom across the aisle. I will treasure this bittersweet moment for the rest of my life. My really amazing traveler daughter on one side of me, my beloved father on the other side, the two of us holding hands in a tight grip most of the way down. My mom ‘vacationing’ on the other side watching Curb Your Enthusiasm and having a much needed laugh. This was soooo much easier and if there had been another time with Dad to go down, this was the way we were going to do it. We spent another month or so down there. A beautiful Mother’s Day with all four generations of Mothers, Dad came to brunch with us and we had a really nice time, Dad even ate some lobster raviolis. He was hardly speaking anymore and I’m not sure what he was thinking, if this was his last hoorah, or if he just wanted so desperately to eat food, but he did enjoy himself eating more than he had been. This lasted until he got back to NYC.
We had planned to try and come back to Florida after Liana’s birthday in August, and that maybe they would just start to take prolonged trips down there by plane with the help of myself or my brother. At some point in July Dad’s cancer came back. His body weakened. He said even less than ever before. He stopped sitting up in the chair because made his bed sores worse. We knew it was coming to a head, but who ever can be prepared. Dad gradually got worse and worse, those moments playing over and over at that time-is it going to be now? Is it going to be in 6 months? Do I make plans? What do I do? Dad died a couple of days after Liana’s first day of preschool, on September 11th, the final gut punch. He was surrounded by my Mom, my brother and myself. I grip so tightly to the fact that he said “what Lisa?” to me the day before he died, the last words he spoke to me, and it somehow felt like a full conversation. He was shivering and I asked him if he was cold. He said “what Lisa”, which sounds incredibly important when your loved one can’t speak. I just keep thinking, in that moment he knew me. And then that moment and what was left of my father was gone. It’s been a little over three months. One and a half years of his torture and three months of grief and coming to terms with what happened to him, to us and knowing we’ll never have him again. That my daughter will grow up without him.
Those road trips will always hold a strange and special place in my heart. It was a very intense time, and I just wanted to reflect upon it as I close out this year. I hope to wake up tomorrow with some new vigor and hope. I will always carry my father in my heart, in my mind and I will try to live as he lived.
The following images are pictures I took on the journey back up north. An easier ride in the sense that we had done it before. These are some of the stretch Dad pit stops we made along the way, something my photographer soul wanted to capture and preserve: