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Twist and Shout to the Memories

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

These days, I find that I spend a lot of time reliving the memories of Ben’s last summer, which we spent in the hospital. The memories are often difficult, and there are many tears, yet, I also do remember the profound love that we showed each other. I am beginning to be able to honor his memory with more of the joy I experienced with him, despite the overshadowing realities of ALS and losing him.

This weekend, I was invited to my friend’s home in West Hampton, NY. It was absolutely beautiful. For several years, I was not able to have a weekend getaway. I could not and would not have left Ben.  Though I did think about that while I was away, and about how Ben and I loved to go on little getaways, I felt less guilt this time, and I was able to really enjoy myself. At times, I enjoyed myself through Ben’s eyes. He would have loved the water views, as I did, and he would have had so much fun at the farmer’s market and outlet shopping. Knowing these things does sometimes bring much sadness, but it also keeps him close, and that lets me embrace life more easily.

The event Ben would have loved most of all was the concert we saw by the Fab Faux, a Beatles cover band that is absolutely amazing. I had never seen them before last night, and the concert was THE place to be in West Hampton! The seat next to me was empty, which was unusual given the sold out crowd. But, to me, it was as if that seat was there for Ben. I listened to and loved that concert for both of us. At the end, the band played “Twist and Shout.” This was the first song that Ben and I ever danced to, starting when we were at a gala for the organization where we worked and met. It became one of “our songs.” When the Fab Faux began to play the song, I actually felt a sense of panic as all of my  emotions converged, and I didn’t know how to react. Ordinarily, a memory that dear to my heart would make me cry- happy to hear it but missing Ben and thinking of the dances that we will never have. Last night, however, the song made me smile and, yes, to twist and shout. I was lost in the smiles and laughter of those memories. I felt Ben there with me and I enjoyed the live performance in his honor, with the tremendous enthusiasm that he would have felt. I know that he will always be dancing with me.

Amazing band! Check them out!

Happy Birthday, Mommy!

Today, July 8, would be my mom’s birthday. I have written quite a bit about my mom and how close we are, most recently on Mother’s Day, but also on the anniversary of her passing and in many references on this blog.

When I think about being in the hospital with Ben two years ago on her birthday, and wondering what was going to happen to him while missing her, I feel overwhelmed by the fact that I have lost the people I loved the most in the world. I do feel so fortunate to have known and shown so much love in my life.  But, sometimes it can feel terribly lonely.

We were always Mickey Mouse fans!

Last week, Michael Bond, the creator of Paddington Bear, passed away. Paddington Bear was my mom’s other favorite character. I remembered how excited my mom was to go to Paddington Station and the Paddington store in Paddington. The woman in the shop was so taken by my mom’s exuberance over the little bear and being in the shop- it was hard not to get caught up in my mom’s child-like delight- that she excitedly handed my mom a Paddington Bear doll to hold while I took her picture. So, it wasn’t all Disney, but Mommy’s first true love was Mickey.

London 1987. My mom could not wait to visit the Paddington store!

I look at our old photographs and remember the laughter. I am proud to have inherited her ability to celebrate her inner child, her youthful demeanor and her joyful spirit. Sometimes people are surprised that she passed away more than 25 years ago, because I talk about her so frequently and vividly. She is always dear to my heart and so much a part of who I am, but also, of the person I aspire to be.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

On her birthday, I like to watch “The Little Mermaid,” because I love to remember how much we laughed when we watched it together, particularly when we looked at my grandma, who just did not understand our delight.

Happy Birthday, Mommy! I love and miss you every single day.

July 6 and True Love’s Kiss

ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

The beginning of July should be a great time for me. After all, I’m a teacher, and school ended on June 28.  On the last day of school, I did my annual Snoopy Happy Dance and left the school building with a big smile on my face. The thing is, for me, summer is now filled with a lot of sad memories, even though I am reshaping my life and do have more joy. Today, July 6, marks the second anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center, where we were met by Ben’s hero and doctor, David Muller, who would, over the course of that summer, become my hero, too. Today was the date when everything changed for us, because this was the summer where Ben succumbed to ALS.

I cannot help but think back to how that summer of 2015 began on a difficult note. Ben had decided, without conferring with me, that he would let go his private home health aide on the last day of school  and that I would take care of him 24/7 for the summer, with a few hours of assistance during the week from a home health aide provided by hospice. To be honest, I was upset and I was also worried. Logistically, how would I even run any errands? Emotionally, I could not understand, and was hurt, that Ben did not realize how difficult-physically and mentally- it was to be his caregiver around the clock, or that he did not think it was something that we should discuss. Although, two years later, I can rationalize my thinking and my reactions, I still feel bad about it, because I would do anything to have him here and healthy today. As it turned out, that summer was spent at the hospital, I was at his side day and night, and I did not want to be anywhere else.

Yes, for me July 6 was the beginning of the end and the memories are still vivid. I remember being in the Emergency Room and meeting with teams of doctors, while also contacting our ALS chapter. I had spent so much time in Emergency Rooms with my dad that they were sort of my normal, but Ben being in crisis was not normal. I remember Ben having different masks on to try to find the most comfortable and effective one, while we struggled to communicate because he couldn’t speak and I could barely read his lips through the mask. And yet, I remember sweet moments, and laughing, too. I remember that I couldn’t kiss him when he had the Bipap mask, so we blinked our eyes tight to show a kiss. How ironic that July 6 is International Kissing Day! But, as the song from Cinderella goes, “So this is love” when you are dealing with ALS- a different kind of true love’s kiss.

Ben had always said that he wanted to do anything to stay alive, but once in the hospital, he wanted to rethink that choice. Many visits and emails with Dr. Muller helped us sort through a lot of that. I’ve written about this a lot on the blog, but it is worth repeating that I told Ben that I would support any decision he made, because only he could decide how he wanted to live and die with ALS (click here to read Sometimes the Right Path is not the Easiest One). It was not easy to grapple with the complications that arose during his hospitalization, and to have doctors explain that these complications were indicators that this would be life with a feeding tube and tracheostomy. It was heart-wrenching to have Ben say he was miserable and then, having made the decision to go to hospice, ask me to help him choose a good day to die. I don’t think those memories will ever become easier. I was not prepared to lose him because his drastic decline was so rapid. For the same reason, he was not prepared to have to make the decision to separate from the ventilator and leave.

It is touching and consoling that music proves to be so important to my healing and to my memories. Every single morning, I listen to a playlist of songs that Ben loved and that were significant during our relationship and that summer. Ben would love that. I cannot forget how the song “One Dance” was my reality check, and the song during which I completely gave in to the devastation.  I am reposting the video with that song. To read my post about the song’s profound significance, click here.

Last summer was my first summer in many years without caregiving responsibilities. I felt lost and conflicted about all of the sadness mixed with the potential to actually enjoy the summer. The first anniversary of losing Ben loomed over the whole summer. I launched this blog during that time, and it has been invaluable in terms of thinking through my own emotions and feelings, dealing with grief, and interacting with so many incredible people who are also taking journeys with ALS or other illnesses, caregiving, and grief.

As I faced the beginning of summer vacation, particularly today, I have dealt with tidal waves of emotion and difficult memories that are woven into my glee at the summer freedom from school. I wonder if the approach of summer will ever come anxiety. It helps me to reflect on memories and events, even though my emotions are Inside Out. Intellectually, I can see that despite being someone who cries easily, I have grown a lot in the past two years, in terms of my perspective and my devotion to caregiving and caregivers, with an especially deep connection to people dealing with ALS. I think that would make Ben and my dad happy. I do find comfort in my conviction that Ben is in a place where he is free from the constraints of ALS, and he is talking, eating, dancing, walking and playing his music. At the same time, I miss him and still find myself talking to him and seeing things through his eyes. These mixed emotions have become a way of life. I chose to write this post because although it has been two years and there are still, and always will be, tears and broad spectrum of memories, I know that this is the unsteady rhythm of life and death and love and loss, but it’s all okay. Summer will be okay. Ups and downs are okay. I’m okay, even if I don’t feel that way at this exact moment. My Disney connections still keep me focused and able to deal with the sad times and the loss. After all, “Love is a Song that Never Ends” and, as Belle’s father Maurice said, “It is love we must hold onto.”

 

Happy Anniversary, Lilo and Stitch!

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

On this date in 2002, Lilo and Stich (Walt Disney Pictures) was released. I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient!  In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories.

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.

I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!

I love this little guy!

I hunted him down at the Animal Kingdom in 2007!

On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.

July 2014, Breakfast at the Polynesian Hotel.

Stitch gave Ben some extra love!

Happy Anniversary, Lilo and Stitch!

Father’s Day Without My Dad

My dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.

For the past few years, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday did not really bring me down. This year, however, I’m feeling very sad, and I’m not sure why. Maybe it’s because despite his own attitude, which I tried to embrace, I do miss him on this day, and fighting my own feelings amplifies the sadness. Maybe I’m feeling the sadness more this year because after he died I was caught up with caregiving for Ben, and then with his loss, too, so I went through motions without really focusing on the event. Sometimes, it simply- or not so simply- upsets me that the people I was closest to are not here anymore.  I do believe that they are always with me, and watching over me, and that is a comfort. But, there are those times that I just want to pick up the phone, or feel a touch. My dad and I spoke several times a day. I miss that. And it still hurts, three years later.

I don’t fight the grief, but I also do not want to dwell in it. I just keep swimming. I let myself feel. I understand the grief and its unpredictability. It helps me to summon the loving and good memories because I never lose sight of how fortunate I am to have them.

I always visited with my dad on Father’s Day. I brought his favorite foods from Zabar’s, documentaries that Ben would make on DVD for him, and books because he loved to read. Usually, the books were about WW2, but sometimes they were humorous books, particularly Jewish humor. I loved his giggle as he would read me the jokes. As he became more ill, I read aloud from some books and we watched movies together. On the night he died, there was a television broadcast of “Mrs. Miniver,” one of his very favorite films, which has become one of mine, especially because of memories of watching it with Daddy. It seems to be on television every year around the anniversary of his passing. It feels like a sign that my dad is with me. I have the DVD of the movie and I watch it when I want to feel close to him, so I will watch it this evening. And then, I will probably watch “Guess Who’s Coming to Dinner,” another movie we joked about, and “Tootsie,” because it is my favorite cheer up movie and one that also made him laugh so hard that he quoted it frequently. I guess movies are very emotional for me. I have to admit that my dad did not like animated films and he never really understood my love of the Disney films, though he did have a healthy respect for Mickey and Minnie and their friends, and he loved to watch the videos I showed him of Ben and me at Walt Disney World because he said he loved to see us so happy and to hear me laughing.

I’ve been looking through old photographs because I do take great comfort in that, despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, is a joy.

So hard to get him to pose seriously!

Today, I will try to remember that Daddy never wanted me to be sad. I cannot count the number of people who stopped me to tell me that I was my dad’s world. And, since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. He would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

I love you and miss you, on Father’s Day and every day!

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.