Six Years: Revelations About Grief From An Unlikely Source- Bruce Springsteen

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My dear Ben,

Yesterday was six years. For the first time, I could not bring myself to write. As always, I spent the evening before reliving that last evening spent in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. It still also hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.

This year, for the first time, I made a plan to go out last night, on this milestone date. It is hard to believe that it was not a Disney event. I saw Bruce Springsteen on Broadway. I always wanted to see Bruce in concert but knew that I would never be comfortable in a concert crowd, even without the COVID issue. I was just so happy that I could see him in my comfort zone- a Broadway theater. On the day tickets went on sale, I got on the virtual queue and was surprised that I cycled through pretty quickly. I clicked on every single date starting with opening night, and I was thrilled to finally find a ticket. I didn’t even check the date. When I clicked the checkout button, I saw that the date was August 26. I hovered for a long time because it seemed so wrong to go on a sad date to an event that you should not have been cheated of attending. Also, I never know how I am going to feel on milestone dates like this- unfortunately, I have many. I went back and clicked on all the remaining dates. Nothing. I started to wonder if you were sending me a message. I know that you send signs to me. Some people would say I construe things as signs, or I look to make them signs. Maybe. Maybe not. What matters is that I see them as signs, and it comforts, validates, and helps to guide me. I decided to get the ticket, figuring that I wouldn’t know how it felt unless I went. It might be a mistake and it might be okay. I do test the waters.

From the time I secured that ticket I was conflicted. Should a milestone date continue to paralyze me? Is it more respectful, or even safer, to stay home with sorrow? I still have no firm answer. I still think about the quote from the live action Cinderella: “time passed and pain turned to memory.” Should it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. I have learned to co-exist with it. I go with the happiness, and I go with the tears.

The week was spent thinking about and dreading August 26th yet knowing that I was also going to an eagerly awaited concert. I felt your presence all week, which is always a good thing. Since I am writing a book from my blog posts, I have been revisiting daily so many memories, photos, and emotions. All of this added to the stress about yesterday. As is my tradition, I watched Monsters, Inc. I also made Mickey waffles, thanks to Kathyrine, my lovely former student. I gave Tinker Bell the Buzz Lightyear catnip toys that I ordered from Chewy, and I told her more about you. She loves these toys so much that it makes me think she knows that they are extra special because of you. I looked at our bevvy of videos and pictures.

I waited until the very last minute to get ready for the performance. As I walked to the subway, a woman in a scooter like the one you had was riding towards me. I moved to the side to let her easily pass, but she came right up to me, stopped, complimented my skirt, and signaled with an okay sign as she told me that I looked beautiful. That’s an odd occurrence on many levels, but I have had a couple of interactions with angels, and I believe her to have been one. I spent the train ride to the theater wondering if you had sent that message to let me know it was good that I was going to the performance, and it made me feel better.

At the theater, I purchased two tshirts and a tote bag- I needed proof that this Disney and Broadway showtune loving gal did, indeed, attend a Springsteen concert! I spent most of the time waiting for the show to start thinking about you– that you would have been happy to be there, that you should have been there, that it was surreal for me to be there. I don’t think I thoroughly convinced myself or anyone else that I was truly excited about it.

The lights went down and the show was about to start. That moment is always magical for me. Bruce entered the stage and I felt myself smile at seeing him. He told beautiful stories and sang songs, some of which I knew well and others that I do not think I had ever heard. It was just Bruce, but his wife, Patti Scialfa, joined him for a couple of songs. With your knowledge and love of music, you would have loved this concert, though I am pretty sure that you were there with me. He told stories of his youth that were funny, touching, and poignant. He talked his family and friends, and notably about the loss of his dad and friends who died in the Vietnam War. He talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. I cried. At the same time, it was something that I needed to hear. For all I know, you wanted me to be there and to hear that message. I will always miss you, and there will always be a sadness that is amplified on days like yesterday, but you will always be with me and will be a part of what I do.

Wearing my Americana Mickey mask to bring my Disney self with me!

After the concert, I hailed a taxi. Once in the car, I started to cry. I think all my emotions converged- sadness about the day, worry about going to the performance and how I would feel, if I was doing the right thing to plan to enjoy myself at a performance on this date, and having had a profound experience that touched me deeply. I posted on social media about the incredible performance. Indeed, it was an emotional event for the concert and for the lessons.

I awoke this morning and again began to cry. I have been struggling all day. Sometimes, it is like that. I brace myself in anticipation of the tension of each milestone date, and then the next day is worse. That is what is happening today. I am sorting through the messages I believe that you sent and Bruce’s words. Bruce’s music is infused with all his memories, whether it is the old tunes, the new ones or the ones he has yet to create. I guess listening to him describe it led me to the revelation that my past has brought me to my present, where in my writing, volunteer work, and even the formation of my club that fosters a compassionate school community, I visit with you, my dad, my mom, grandma and the other people I’ve loved and lost. It is not about how I choose to honor a milestone date. It is how I choose to live, with the old and new memories. That doesn’t yet make it easier, but it helps.

I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I am absolutely certain is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.

I love you,

Abby

What Ratatouille’s Remy Understood About Food

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In online forums, I have seen many comments and questions about ALS and eating issues, ranging from chewing, swallowing and calories to getting and navigating feeding tubes. Eating is an experience that we take for granted until ALS happens. More than taste, food conjures memories and draws all kinds of connections for us. Ben and I used to enjoy a Saturday night when I would choose a recipe, then we shopped together, and I cooked with a little help and a lot of enthusiasm from Ben. On special holidays, like New Year’s Eve, we did not like to party, and for us it was fun to choose a new and fancy recipe and just have a cozy evening. With ALS, Ben could no longer eat his favorite foods. Even treats like jellybeans were no longer an option. While that may not seem like a big deal, our love of jellybeans went back to the very beginning of our romance. I don’t think I realized the significance of food for us until we were not able to enjoy that romantic and fun aspect of our relationship.

In the Disney film Ratatouille, Remy says, “If you are what you eat, then I only want to eat the good stuff.” Unfortunately, as chewing and swallowing became more difficult and daunting, Ben did not want to eat and he was losing a lot of weight. Like many people with ALS, Ben’s life started to include a lot of Ensure Plus because he needed extra calories. Like Remy, I began to improvise and combine different foods to make as much “good stuff” as possible. Ben got a daily milkshake with calorie dense ice cream, peanut butter, and assorted other fruit and treats. Much as I love sweets, I never had one of those milkshakes, have never had a milkshake since and probably never will.

The ghost of famed chef Gusteau advises that “cooking is not for the faint of heart. You must be imaginative, strong-hearted, you must be willing to try things that may not work.”  Indeed, I did use my creativity, and, in retrospect, it was a way to be craftsy, which I missed in my life. Also, it was a way to bring something vaguely resembling the fun evenings we had when I cooked. I replaced our regular blender with an impressive Vitamix. Ben loved chicken, gravy and mashed potatoes all mixed into a bisque-like consistency. He enjoyed chicken with teriyaki sauce and mashed potatoes. I even perfected a carbonara-like sauce for him. I experimented with different broths to help with textures and flavors. Ben had a great sense of humor about it laughed at my eccentric presentations, but he did miss chewing, and the reality was that eating did become a scary. There was always the fear of choking. Additionally, when he could no longer hold utensils or a cup, he had to be fed his meals. This was yet another constant reminder of his lack of independence and ability.

Even when he had a home health aide who loved to cook, Ben preferred that I did his cooking. When I left food for her to just heat and grind in the Vitamix, Ben was always upset that she didn’t grind it enough. He said she insisted it was chopped as much as possible. Of course, that wasn’t true, since I was easily able to achieve more of a puree. I have seen caregivers who do not take seriously the requests from their carees. In many cases, as with Ben, those requests are legitimate. Frankly, as I saw it, even if a request was simply a desire by Ben to exercise some control, it is understandable in the context of the little control he had over his life.

When unknowingly critiquing the rat Remy’s meal, Anton Ego, the food critic, reflected, “In the grand scheme of things, the average piece of junk is probably more meaningful than our criticism designating it so.” Eating that meal transported Anton Ego to his childhood memories.  Many people do associate foods with their families, their cultures, their travels and life experiences. McDonald’s might not have qualified as “good stuff”, but for me, it was the fun of going there after a day at the beach with my family and my dad singing and making us laugh in the car. My favorite restaurant in New York City, Joe Allen, is beloved because I often went there with my mom, aunt Ellie and grandma before the theater. Baking is a way that I feel very connected to my grandma, since she taught me the recipes that were originally her mother’s. I might not be a fabulous cook, but Ben appreciated how much I loved cooking for him, and it was a joyful and loving part of our relationship to shop and spend the evenings together. I never really cooked until I met Ben, so he rightfully claimed credit for my acquired skills. With ALS, food took on a different meaning. It was about Ben’s nutrition, maintaining weight and staying safe. Even at our happy place, Walt Disney World, Ben was always terribly self-conscious and nervous that he would have a choking incident. Fortunately, we only had one small incident and it was brief and unnoticed by others. Ultimately, food represented more loss.

I think that Remy’s most profound statement is, “the only thing predictable about life is its unpredictability.” No one could have predicted that Ben would have to battle ALS. We could never predict the many ways that our lives would have to change and their emotional toll. After Ben got his feeding tube and tracheostomy, one of the things Ben said he truly missed was food. In fact, one of the very kind nurses put a little bit of soda on a mouth swab so he could at least savor the flavor. After I lost Ben, I did not expect that a mundane chore like grocery shopping alone would be a painful experience. It was stressful to walk through Trader Joe’s and see the ice cream I bought for Ben’s milkshakes, and the gravy that I bought in huge quantities so that I always had it on hand for purees. I did not cook for at least a year, until a friend of mine had surgery and expressed a desire for a home-cooked meal. As I prepared what was one of Ben’s favorite meals, I was overwhelmed by the fragrances that Ben always loved. It has become easier as I am more able to focus on the good memories and I am more accustomed to doing things alone.

Now, when I enjoy a meal, I find myself hoping Ben is somewhere savoring all his favorite foods!

Your Acts Of Kindness Are Pixie Dust For Caregivers!

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Walt Disney said, “The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.”  The act and art of caregiving showcased this lesson. It is difficult to be a caregiver and also difficult to need a caregiver. For me, caregiving was challenging and heart-wrenching, but also the most meaningful, rewarding and loving work I ever did.

The bottom line is that caregiving can be daunting, overwhelming and isolating. Needing help is difficult for many caregivers. It seems a contradiction to ask for the care when you are the giver of it. As hard as it is to ask for help, for many people it is also hard to know how to offer support. I do believe that many people genuinely want to help. This is frequently expressed in statements such as, “let me know if I can do anything.” It is not that this is not sincere. Unfortunately, it is not always helpful. For one thing, asking a caregiver to reach out adds yet another burden. It also requires a caregiver to determine if a person is truly willing to help, and to what degree.

There are apps and web sites that enable the coordination of tasks. These are great to pursue. However, they also require effort to organize, particularly for those people uncomfortable with technology. As caregivers, we know what we would appreciate for ourselves and our carees but we seem reluctant to share these wonderful and often simple ideas with the people are able and willing to tackle the tasks. Maybe it is discomfort with asking for help, and it could also be a feeling of being overwhelmed and just wishing that people knew what to do without your telling them, because you already direct so much activity!

What I have done here is compile a list of suggestions, or wishes, shared by caregivers, including my own. Please share this post, or print out the information here and email, text or hand it to anyone who asks you to “let them know” what they can do. Share it with people you know who are caregivers or who know caregivers. Let them choose from the list. Highlight the things that really appeal to you and are appropriate to your situation. Clearly, some of the suggestions are contingent upon the circumstances of the caree and the extent of relationships. Modify or add to the list it as you see fit!

The most important thing that family, friends, neighbors, coworkers and others can do is to be present and not to make empty promises. It is better to show up than to stay away because of fear. We may be the caregivers, but others can, and often want to demonstrate the “care” in care-giving!

The majority of these suggestions did come from caregivers of people with ALS (pALS) but, they are easily adaptable to many situations.

Household tasks:

**Please note: Some of these can be done on a regular basis. Also, be specific about what you can do. For example, let me know that you can do my dishes every Wednesday evening.

  • Do errands like going to the grocery store or pharmacy. You can even text from a store to see what I need.
  • Stop by with groceries or a meal.
  • Bring lunch to my caree when I’m not home.
  • Help with a household project, such as home maintenance, gardening or cutting the grass
  • Walk the dog and give him/her some play and run time.
  • Take or pick up my child(ren) from school/library/club/playdate.
  • Do the laundry.
  • Sweep the floor.
  • Do the dishes.
  • Provide transportation to/from doctors and clinic appointments.
  • Organize bills and paperwork.
  • Perform or help with the night-time routine and putting to bed.
  • Bring my trash bins back from the curb.
  • Bring mail from a curbside mailbox.
  • Volunteer to make phone calls to help coordinate care.

Respite:

  • Visit with my caree, even if for a short time, so that I can shower, take a nap or just relax. Tell stories, share memories, laugh!
  • Stay with my caree while I go for a walk, run an errand or do anything that will give me some peace.
  • Feed my caree a meal to give me time to catch up on things, or just relax.
  • Take my caree for a ride, to the movies, shopping. We need a break from each other!
  • Make a meal, for my caree and/or for me. Just show up with it! You are invited to join us.
  • Bring coffee or tea or any snack and join me for a break.
  • Come for a chat. Even if my caree can no longer chat, he/she listens and will feel  engaged, needed and valued.
  • Flowers brighten our day. Laughter does, too!
  • Spend time with my children- read and play games with them or take them out to the library or playground.
  • Spend the day with my caree so I can clean, do long overdue projects, etc.
  • Read aloud or play an audio book and stay to listen.
  • Spend time with me, even if the conversations and times get interrupted with my caregiving responsibilities. You can even be a second set of hands if I get overwhelmed.
  • Bring lunch, sit and enjoy the meal with me.
  • Share your joys and stay connected through texts, emails and calls, even though I cannot always respond.
  • If you go to a restaurant, bring something back for me.
  • Stay over, so that I can have a brief getaway.

If you can:

  • Pay for housekeeping services, for one time or even on a regular basis
  • Spa services are a wonderful gift- manicures, pedicures, facials, or a whole spa day!
  • Contribute money to hire caregivers for various periods of time
  • Gift cards help us with a variety of items.
  • New sheets and a comforter.
  • Help us to start our Amazon wish list so that anyone interested can provide items that we need.
  • Research and assist with securing equipment and grants for home.modifications.
  • Be an advocate for caregivers and on behalf of any disease.

Walt Disney also said, “There is great comfort and inspiration in the feeling of close human relationships and its bearing on our mutual fortunes.” I am grateful to the group of caregivers that I have had the pleasure to get to know and who have offered support and contributed wonderful and thoughtful ideas that you see in this post. Share this list with people who say that they want to help. Ask them to share it, too, so that others who are or know caregivers get ideas for how to help. I found that kindness often came in most unexpected ways and times. Despite the circumstances that none of us wished for, I hope that this is a bit of pixie dust.

International Cat Day- Celebrating The Pixie Dust Our Pets Bring To Our Lives

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Tiffany and Figaro

Today is International Cat Day. Sometimes, it’s hard to take all of these celebratory days seriously. Sometimes they are just fun. But, today, a day to celebrate my cats, is deeply felt time to honor my girls, Tiffany and Disney, whom I miss so much, and Tinker Bell, who, like the fairy for whom she’s named, has brought some real pixie dust into my life. August is always an emotional month of ebbs and flows because it marks Ben’s time in the hospital and the day that he succumbed to ALS and left this world. Now, it also marks another year of COVID19 and uneasiness about the upcoming school year. I have spent much more time at home during the coronavirus pandemic, and I am even more grateful for the company of Tinker Bell and reflective on the significance of pets in my life. I also think about how important it was to have my pets during caregiving days and grief.

Disney characters often have pets, and those characters are often the most reliable friends, filled with unconditional love and an ability to bring comfort, joy and laughter. Mickey Mouse has Pluto, Gepetto has Figaro and Cleo, Cinderella has Bruno and the mice, Prince Eric has Max, Jasmine has Rajah, Lilo has Stitch, the Darlings welcomed Lady, and Moana has Pua, and these are just some of the pets. Sure, they are cute to watch, and they add levity, but as I’ve gone through caregiving experiences and grief, I see them as more than just adorable sidekicks. As a pet lover, I recognize the power of their devotion and friendship. The pets, and even the forest friends of Snow White and Princess Aurora (Sleeping Beauty), are the ones with whom they share their hopes, dreams and worries. Pets help take away the loneliness and sadness. I think they’ve always won my heart because they conjure the lighthearted and sweet way that my own pets have helped me to delve into my emotions and feel hope and love. They also allowed me to fulfill my love of taking care of others, human and otherwise.

From the time I was a child, and our dogs became ill, we doted on them and cared for them. We grieved them when they left. When I was sad, I could always count on my pets to bring comfort. When they became ill, we were their caregivers and brought comfort to them. I suppose I learned a lot about caregiving watching my parents tend to our dogs as they aged and became ill, feeding them with syringes and carrying them up and down and in and out. Our lives revolved around them. We would have had it no other way.

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

My dogs and cats also cared for me. After I lost my mom, our dog, Dulcie, was the one I turned to when I needed comfort from the tension and grief that pervaded my house and family. She then kept me company during my grandma’s battle with cancer. It was beautiful to see Dulcie stay by grandma’s side, bringing her comfort and peace. Dulcie may not have been able to communicate with words, but she clearly sensed that grandma was leaving this world and she shared our grief. When words eluded me, I could just sit with Dulcie and feel her devotion. When I simply needed distraction, she was always up for a game with her toys.

There’s a perception that cats are aloof, but my cats have always been very sensitive and attuned to me. They’ve known when I needed them and they know that I will be there for them. Tiffany may not have liked to be held, but she had her own way of showing affection, though definitely on her terms. She brought so much fun and comfort to my life, especially because she was the first pet who was only mine and my first cat. Also, Tiffany chose me. I was her human from the moment she entered my workplace, so there was no question she would go home with me when I got new job. When Tiffany had cancer and needed surgery, I did whatever needed to be done, and my dad helped me because he considered her family, too. It was an honor to be her mommy and her caregiver.

Tiffany loved our Disney toys!

When I lost Tiffany, Ben and I welcomed Disney, my cuddliest and sweetest girl. Poor Disney had the responsibility of being there for me when I was caring for my dad and Ben. Disney witnessed and experienced Ben’s ALS battle along with me. When Ben became homebound, she kept him company. She accommodated his loss of mobility, making it easier for him to reach and pet her and staying close by so he could see that she was watching over him. It was easy to see her concern as he had more difficulty navigating the space. Unlike many cats who are territorial, Disney seemed to know that there was a reason for all of the changes in our apartment. Furniture was moved, things were stacked, her favorite corners were no longer available, but Disney handled it so graciously. She was there for me when I needed her, too. She sensed if I was crying or frustrated and was always at my side at those moments.

 Disney was “Miss February” in the Bideawee calendar in 2011!

When Ben was in the hospice unit at Mount Sinai Medical Center, I was allowed to bring Disney to visit him. She was on thyroid meds and suffering from arthritis, so at first, she was not comfortable on the bed with him. She sat on a chair and watched him intently. When he asked me to bring her closer so he could stroke her, I put her on my lap and she pulled herself up on the bed, curling up on his chest. He asked me to put his hand on her, she turned on her side, and they both closed their eyes. I truly believe that they said their goodbyes in this moment.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

In truth, it was definitely an added responsibility to have a pet while being a caregiver. When I was with Ben in the hospital and did not want to leave his side, on top of everything that had to be handled with Ben, I had to make arrangements for a friend to feed Disney. There were a couple of times that I had to leave the hospital a bit early or arrive a bit later than usual in order to pick up her medications. But, these were things that Ben and I wove into our days and expectations. She was family and I was also caring for her. Those responsibilities were actually joyful.

Visiting hours for Disney during one of her hospital stays.

Disney did not know that she was the comfort that Ben and I needed after we lost Tiffany. She also became the comfort I needed after the loss of Ben. The apartment was so lonely and there was no more structure to my day without my hours spent at the hospital. I don’t know what I would have done without Disney’s sweet face and presence. Unfortunately, my caregiving structure was quickly restored when, just a couple of weeks after Ben died, I learned that Disney had diabetes and I had to inject her with insulin twice a day. Just as I had to do as Ben battled ALS, I had to put aside my squeamish nature. Once again, I was a caregiver, this time for Disney. We had several emergency visits to the vet, including one in the middle of the night, when I genuinely thought I would lose her. Terrifying as it was, it was this incident that showed me that I truly am a caregiver at heart. (You can read a little more about my experiences with Disney by clicking here) It is my strength and my fulfillment despite the challenges and sadness. Administering fluids was the next phase of Disney’s illness and although it took me a while to learn how to do it without pricking her, she handled it so well. I promised Disney and myself that I would never keep her here if she was not having a good quality of life. Eventually, I was by her side as I let her go. It was particularly difficult to let go of Disney because she was my closest connection to Ben. She may not have been able to articulate her feelings, but she saw, felt and responded to his ALS struggle and its effects on our family.

My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!

I knew that I could not be alone for long. Within a couple of weeks, I welcomed a new little love. Tiffany and Disney were more than eight years old when I met them, but this little girl was only two. She was half the size of them, which, in my way of thinking, was fairy-sized, so I named her Tinker Bell. I see Tiffany and Disney in her, but she still has a lot of kitten in her, so she makes me laugh with her antics. Ironically, Tiffany and Tinker Bell love all of my Disney plush toys, while Disney, despite her name, was less interested in them. She is a bit skittish around other people so they don’t see her gentle sweetness. Tinker Bell’s greatest joy is knowing that I am staying home with her, so the sheltering in place was a dream come true for her. I’m glad she doesn’t understand the news. Still, I can talk to her about my worries and enjoy having her companionship. I know she thinks she’s training me well, but I love making her happy.

This summer, I have finally followed through on my desire to write a book for caregivers. It has been a healing process. I hope that it will become a helpful and even inspiring resource for caregivers. However, looking through many photos and videos has led to some tears. Tinker Bell has come to sleep right up against my leg as I type. Sometimes, I tell her how much I miss Ben. Always, I tell her that I am so grateful to have her as my little girl. She understands.

Tinker Bell loves her new little Sully, which I brought her to remind her of Ben.

Having a pet is a big responsibility, which can be difficult when it is added to caregiving responsibilities. There are some logistics that can be downright challenging. While pets may not be able to tackle specific tasks in caregiving, any pet lover knows that they provide an incomparable service. It is a great joy and privilege to have a bond with a pet, and the care and love that we provide for each other is limitless. On International Cat Day and always, I celebrate Tinker Bell, Disney and Tiffany. #InternationalCatDay

On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour