ALS

Five Years- Was Fairy Godmother Right About Pain and Memory?

My dear Ben,

Today is five years. Five years. It’s been a difficult day, as it always is. I went to sleep reliving our last night together. I woke up reliving that last day. I’m still grateful that you left this earth surrounded by love and music. It still 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.

Five years. Should those memories still be so debilitating? It seems like a milestone increment of time that should come with some kind of revelation. Should. I hate those “shoulds.” I think about the quote from Disney’s 2015 live action Cinderella: “Time passed and pain turned to memory.” Does it? “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. Triggers like this date are huge setbacks. I think that the quarantine period due to the pandemic has brought back so many of the caregiving memories. Although removed from those responsibilities and worries, with every excursion outdoors I have found myself dwelling on how it would have been if you were here and there was a constant threat of COVID on top of ALS.

Five years. I don’t know where I expected to be. I try not to concern myself about what others think about it. There are times when I feel like I’ve come far and times whenI feel that I am too consumed with our experiences and still in a relationship that I must face can now only exist in the form of a spiritual connection. I recently printed out all of my blog posts from the past four years. I spent the past several days reading them- 695 pages of thoughts, memories, regrets, concerns, wishes, successes, failures, steps forward and steps back. I can see that over the past five years I have ventured more purposefully into life. I have done a lot of reflecting. I have carved out a nice life for myself. I have also given myself permission to feel however I’m feeling. I find it satisfying to find ways to support other caregivers. I am proud that I have contributed to fostering a caring community within my school and I still intend to reach more caregiver kids. I have good friends- old and new- and I do things that I love. I even wore a wet suit to get in the water with beluga whales. Yes, I actually bought and wore a bathing suit. Early in my writing I expressed a reluctance, but also a sadness, that I did not know if I could ever enjoy Walt Disney World without you. Last year, I was able to return with Monica, Andi and Snappy (Abby 2.0) and we honored you while we also created new memories. It was heartwarming and empowering. So, there has been growth. Is it enough?

I feel a sense of bittersweet pride when I take delight in the new memories. I flounder when I think about the future, especially when I consider that I am alone. Yet, I know it’s time. I even bought a new set of picture frames to capture the new memories and give them a special place beside ours. When I say it’s time, it’s not because of the five year marker. If it had happened after two years, that would have been fine. If it didn’t happen for another five years, that would have been fine, too. Walt Disney said, First, think. Second, dream. Third, believe. And finally, dare.” Thinking and dreaming are easy for me.When I say it’s time, it’s because I’m feeling prepared to try to believe in myself enough to dare to find my way. I think that’s a good thing, even with the pain.

I am not sure where I want to go from here, which is one of the reasons that I printed out my blog. Merida says we need to look inside ourselves to see our destiny, and caregiving and grief resonate so clearly within me. I think that this five year mark is a good time to look at this period of time and my evolving perspective. It gives me great comfort to know that you remain so vibrant in my treasure trove of memories. I feel that those memories propel me to further explore and discover my destiny. The pain is not just a memory. It is a palpable reminder of how much love there was and how much those experiences are shaping my life in positive ways. You will, of course, join me in this exploration. Please help me to confidently travel the new paths in work, life and love.

Five years. I continue to miss you every day. I’m getting more accustomed to finding ways to keep you with me as I continue my own journey. I do often feel alone. Sometimes, I think I keep you close to avoid those feelings. Thank you for sending me signs that you’re with me. I know there are people who don’t believe in that, but we always did. Thank you for letting me feel supported when I step out on my own. I will always feel a sense of anger that you were cheated of so much life and we were cheated of so much time together. I hope that you can feel that I often look at life through your eyes to experience things for both of us. I feel the pain of your absence, but I do strongly feel your presence, too. You are still so deep in my heart, woven into the fabric of who I am. Our relationship is not baggage, but rather experience that offers the important reminder that love isn’t always easy but it is, as they say in Bambi, a song that never ends.

I spent a lot of today looking at our videos and photos. There were a lot of tears but also many smiles. I have told Tinker Bell about you. Interestingly, she spent a lot of time on your Monsters, Inc blanket. She’s been very attentive, too. Maybe you had a little visit with her. Each night, we look at your picture which is my screensaver, and we say goodnight to you.

I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I believe 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

February 2020 Calendar Page

 

In Grief, Do We Move Onward?

Copyright © Disney Pixar 2020

I do not like the expression “moving on” with regard to my grief. To me, it implies leaving something behind. I have not left Ben behind. I am particularly sensitive to that as the five year anniversary of his “leaving” approaches.

I was not sure what to expect from Disney’s film, Onward. As it turned out, I thought it was an ambitious and sweet effort to approach the death of a parent, and death, in general. The story has good messaging that could be helpful to children. It was even validating to me. But, I still don’t like the title.

Onward tells the story of two elf brothers, Ian and Barley. They have lost their dad, but it appears that he died before Ian was born. The mom reminds them of how loved they were, pleased to see Ian wearing his dad’s sweatshirt. Ian so much wants to know about his dad. For his birthday, he has a list of things that will define him as the “new me,” and that list includes being like his dad, but he really doesn’t know what his dad was like. Barley has few memories of his dad that he does not seem to want to talk much about, and he finally admits that he felt bad that when his dad was in the hospital and had lots of tubes in him, Barley was too afraid to see him. Having lost that last chance to see his dad, from that point on, he vowed never to be afraid again.

Ian wants memories. He plays a tape recording of his dad talking, conversing with his dad as if it is an actual conversation and finding such comfort in hearing his dad’s voice. It’s a heartbreaking reminder that we can never bring back these experiences. I can relate to that feeling of trying to watch videos and put myself back in time to those moments. I am lucky that I have a lot of memories. I’m grateful that I was there for Ben during the bad ones. As a teacher, I have met many students who have lost a parent and do not have memories. Films like this show them that they are not alone. And, they tackle the material that can be hard for remaining parents to discuss, opening doors for discussion. For Day of the Dead, I show Coco in my Spanish classes, and I have had more than one student ask to watch it alone or with me during their lunch period, because it helped them to process their losses and they liked to talk with me about the comfort of feeling that their loved ones were still there for them on some level.

In Onward, the boys’ mom is the support and encouragement that the boys need. She recites a mantra that there’s a warrior inside as a reminder to herself. This is a mantra that could help anyone throughout their experiences in caregiving and in grief. She not only needs to help her sons in dangerous situations, but also in their grief. On Ian’s sixteenth birthday, their mom gives them a gift per their father’s wishes. Even mom makes a discovery about her late husband. He was a wizard! He leaves the boys with a special wizard’s staff and a spell that would bring him back for a day to see how they have grown up. Imagine such a spell! What I wouldn’t give for a day with Ben.  As it turns out, the spell gets messed up and they only bring back their dad’s legs and feet. They are determined to fix the spell to be able to spend the time with him. This leads to a series of mishaps. Oddly, after traversing the land in search of the missing gem to fix the spell, they end up exactly where they started. Such is grief. We go through all sorts of motions to make sense of loss and to allow ourselves to feel the person is still with us. In the end, we cannot recreate the person or the experiences. We find ourselves back at the pain of loss. However, the journey allows us to explore our memories, our emotions, and even to gain better understandings of others and ourselves.

During their adventures to bring back their dad, Ian sees that it’s Barley who has a lot to say to their dad. Barley misses the man he knew. Ian misses having and knowing his dad and realizes that Barley has been that father figure for him. All of the things Ian lamented not doing with his dad- laughing, learning to drive, taking walks- he actually did with Barley. Ian knows that Barley is the one who deeply needs to have those moments with their dad. He lets Barley have that last hug. I still wish for that hug. It’s gut-wrenching to acknowledge that this cannot really happen (unless I come across a wizard’s staff). If I thought I could, like both boys, I would fight for an opportunity to reunite with Ben to ask him questions and to hug him. Just like the boys, I would want to know that he is happy for and proud of me.

I often write about the signs I see that Ben is with me and how they console and inspire me. I also take comfort in revisiting our memories, especially through photos and videos. As I’ve been organizing my apartment this summer, my breath has been taken away as I’ve rediscovered cards, gifts, ticket stubs and other mementos of our time together. Navigating grief does sometimes feel like a quest, but I don’t see it as one in which I forge “onward” and triumphantly defeat grief. Instead, carrying in my heart deep love and memories, as well as the belief that Ben is with me, I humbly step forward in life.

Happy International Cat Day- Celebrating Cats, Pets and Caregivers

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. In March, in honor of National Respect Your Cat Day, I wrote about the importance of pets throughout my life. At that time, we had no idea how long we would be dealing with COVID19. Now, as I have spent so much more time at home during the coronavirus pandemic, 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.

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.

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

 

Toy Story 4: Caregiving Personalities Through a Pixar Lens

July 2014, Hollywood Studios.

Toy Story 4 was released on June 21, 2019. It received mixed reviews, but that never colors my desire to see a new Disney Pixar film. I also kept to the tradition that Ben and I had of seeing the film on opening weekend, going by myself to keep the experience sentimental and to feel that I am somehow with Ben. It may be no surprised, but I loved the film. I could relate to it on many levels, particularly as a caregiver who then transitioned to grief. Also, as a lover of toys, I simply have not been able to part with some from my childhood but have passed some of them on to others who needed and will love them. I did not write about it at the time, but it has stayed on my mind, and I watched it again yesterday, finally able to commit my thoughts to paper.

At the end of Toy Story 3, Andy brings his cherished toys to sweet young Bonnie as he goes to college and starts a new chapter in his life. It was heart-wrenching for all of us who have loved the Toy Story films and yet heartwarming that Andy gave such thought and love to his decision to give his toys to Bonnie. In Toy Story 4, the toys have settled in with Bonnie, but Bonnie has told her mom that it was okay to give away her Bo Peep lamp. Woody wants to rescue Bo Peep, but Bo Peep is okay with the letting go. She bravely accepts it as part of life. Letting go and adjusting to change is a big theme in the film. It is a big theme in the life of a caregiver, too. In the film, the toys are the friends and emotional support of their child. They all approach their role as caregiver with a different perspective.

Throughout the film, we see how the toys perceive their responsibilities as caregivers, much the same as people have varied ideas of their responsibilities. Woody is the take-charge caregiver, completely devoted to Bonnie, although he still has an attachment to Andy. Woody finds his self-fulfillment in the caregiver role. He is Bonnie’s advocate, even sneaking into a backpack to secretly accompany her to kindergarten and working behind the scenes to help her get comfortable. The other toys don’t agree with what Woody considers loyalty. I can relate to hearing much advice but having to go with my gut as Ben’s caregiver. Even in the hospital, there were times that I had conversations on Ben’s behalf, defying the advice of hospital staff because I knew what Ben wanted and sometimes, what he didn’t even know he needed.

Poor Forky, the new character, hand-crafted by Bonnie, never asked to be a caregiver. He didn’t want to be responsible for a child. Woody, who is proud of and dedicated to his role as Bonnie’s caregiver, constantly needs to teach and remind Forky of how much Bonnie depends on him. Forky is in some ways oblivious, but also reluctant and ambivalent about this new role. He was happy as trash. I’m pretty sure that many caregivers can relate to this feeling, or to family members who vaguely knew they had a responsibility, or even offered to take on responsibility, but were never reliable and did not want to be held accountable.

When Woody surprisingly discovers Bo Peep, he reverts to the memories of when they were all in Andy’s home. Bo Peep still has those memories, but she maintains that she is happy to be on her own, or what is termed a “lost toy.” Bo Peep explains to Woody that she’s moved on and enjoys her freedom. Over the years, I have met many people who did feel an immediate freedom from caregiving, also relieved to be free of the bad memories of illness. They are not involved in causes related to those illnesses. I was not one of those people. I got upset when people would tell me I was free or that I had my life back. I am not judging, because everyone has their own experiences and frames of mind with regard to caregiving. I do understand wanting distance from the pain. For me, it was all tied to my identity, so giving me freedom was also taking away all that I was, or all that I saw as myself and the reflection of the people I loved and lost.

Woody does judge Bo Peep, and when she presses him on why he clings to Bonnie, and to his attachment to the memories of Andy, he finally admits that, “It’s all I have left. I don’t have anything else.” Next month will be five years since Ben left this earth and I still struggle with that feeling. So much of my identity, and even my self-esteem, was entwined in caregiving. I transitioned from caring for my dad to caring for both of them, and after losing my dad, caring for Ben, for what amounted to more than twelve years. I related so much to the caregiving experience that part of my coping with grief was starting this blog and volunteering with ALS organizations to try to support others who were caregivers. It was a way to stay loyal to Ben and my dad and to hold onto the only Abby I had known for quite a while. I could not step forward into life without carrying that part of myself. Although there were a lot of unpleasant times, it was the loving, meaningful and important part of who I was and wanted to be.

ALS,Caregiving,Grief,Walt Disney World, Disney

My silly Ben with his buddy, Buzz.

For Woody, everything comes down to the issue of loyalty to Andy and to Bonnie. However, his friends feel left behind. He felt they should understand his loyalty. I understand that feeling. We all define and express loyalty differently. That’s why communication is important. (click here to read my post on communication). When Ben and my dad were alive, I certainly saw my friends  less and often ignored advice to do what I felt was right, even if I, myself, was not happy with the effects those choices had on me. That was how I defined loyalty. I was rarely loyal to myself, although I felt that I was simply trying to be a devoted caregiver. If you’ve read my blog, you know that sometimes it took an unnecessary toll on me. Loyalty to oneself is important, though difficult to achieve as a caregiver.

Since I lost my dad and Ben, it has been very important to maintain a feeling of loyalty to them. I still have a difficult time balancing my connection to memories with what is now a desire to embrace my life. There can still be the nagging feeling of disloyalty, even when I go to the new Disney films, because I am enjoying them without Ben. My way of coping is to give him a big presence in all that I do, but, to be honest, I know that it is self-deceptive. It sometimes keeps me in a relationship that no longer exists, despite the fact that it will always stay in my heart. For a while, I did not like to attend holiday gatherings, because I did flounder. I didn’t really want to be by myself, but it was too hard to be around others and try to look happy. And, it was hard to return home alone. Woody tells Bo Peep that she is a “lost toy” because she does not have a child, but she says that he is the one who is lost. She’s right. Bo Peep is not as happy to be free from connection as she professes, but she has at least carved out a life for herself. However, Woody is lost because his entire identity is grounded in children who grow up and pass him along (unless, of course, he ends up with someone like me!).

Buzz Lightyear has a very special place in my heart because he was always Ben’s favorite superhero and I always remember how Ben had a hard time greeting Buzz after his ALS diagnosis because Buzz was strong and Ben felt weak. Buzz made a big fuss over Ben, which always warmed my heart. In Toy Story 4, Buzz turns out to be the character who provides the voice of reason. After all, he does have the “inner voice button.” I laughed at how he kept pushing that button till he got an answer he liked. I can relate to that idea! Buzz lets Woody know that Bonnie will be fine on her own and that it’s okay for Woody to let go of her and have an identity apart from those for whom he cared. As Buzz advises, “Listen to your inner voice.” It’s not easily done. I surely pushed that button repeatedly when it came to my caregiving responsibilities. It’s taken all this time, but I am now, finally, more at ease with letting my inner voice matter. I am finally acknowledging that loyalty to their memory does not have to keep me in the throes of grief anymore. However, although I feel it less, I still grapple with the guilt of living my life. It’s an adjustment to life and how it flows. I had to be ready to rediscover myself and I had to do it in my own timeframe. I can say that once I was ready to hear my inner voice, like Woody, I let it speak more loudly, and it has guided me to a place where I can happily and wholeheartedly engage with life. I no longer feel quite as lost, though I am not exactly where I want to be. Though I’m still very tied and loyal to my memories, I also love and seek out opportunities to create new ones, and I feel proud of myself for doing so, while also keeping Ben and my dad close in my heart. I just wish I had a cool inner voice button like Buzz Lightyear’s.

Just Buzz and me in 2019- my first time back at WDW without Ben, but I know he was with us.

ALS And International Kissing Day Without Kisses

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

Today, July 6, marks the fifth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this will always be thought of as the date when everything changed. Over the years, I have learned to go with the flow on milestone dates, but this particular day has remained a terrible and vivid memory filled with tears. How ironic it is that today is International Kissing Day, because on this date Ben was connected to a ventilator and his mouth was covered with a Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would smile and throw him a kiss- he couldn’t use his arms or hands to throw one back. In these days of COVID19, I relate to people lamenting not being able to hug because I missed Ben’s hugs so much as his ALS progressed.

It’s still morning and I have been replaying that day five years ago, when we woke up and Ben said he could not breathe. He was always nervous about breathing, so I stayed calm even as he followed my direction and blinked to indicate that he wanted me to call 911. I think of how time stood still as we waited for the ambulance, not knowing what would happen. I called and emailed his doctor and remembered that he had once told us that if we had to call for am ambulance, they would take us to whichever hospital they thought closer. Fortunately, EMS agreed to take us to Mount Sinai so we could be close to his doctor, who met us at the ER and, always kind and comforting, stayed with us till Ben was situated, emailing me throughout the day and coordinating with Ben’s ALS team. I remember that in the midst of the frenzy of an Emergency Room, it did not even occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I didn’t have time to think. I didn’t even have time to be in denial. I just went through motions. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a couple of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. We ended up in the ER for at least 36 hours waiting for a room, meeting with specialists, and in contact with his ALS team, all of which was overwhelming and exhausting. Ben slept a lot, and during that time I struggled with my emotions and guilt about the frustration that I had been feeling because I was so angry that, without discussing it with me, he let go his paid part-time caregiver and insisted that I be his 24/7 caregiver since I am a teacher and it was summer vacation. Now, summer had barely begun and here we were in a hospital. I shared all of this in a previous year’s post.

Five year increments always seem to be distinctive markers of time, so I can’t help but reflect on that. I wonder if five years should feel like more time has passed. This is my fifth time feeling the pain of this day and it is still debilitating. My only plan for the day is to await a delivery of shelving items to help me in my ongoing effort to organize my apartment. It’s already been a morning of tears, so it’s all for the best that I’m here and writing about my thoughts. Even organizing my apartment brings back memories of the chaos of this place when it was an obstacle course of clutter and medical supplies. I’ve significantly improved it- painted, re-carpeted, and added some new furniture, but the memories remain. I still think of my new dining table as the table that replaced Ben’s desk. I am listening to Ben’s favorite relaxation/new age music on his computer- something I could and will not replace because it was his lifeline. Today is not a day that I want to hear that I should make plans to distract myself, or should be proud of myself for carving out a new life for myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my heart is stuck in that day. Unfortunately, COVID19 has unearthed a lot of those difficult caregiving memories and has added another layer of sadness to this time.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled largely with the memories of Ben’s last summer. It’s an odd contrast to my being a teacher and eagerly awaiting summer break. I have, however, come to cherish my frequent summer walks in Central Park. I do look for signs that Ben is with me, and finding turtles there is an important sign that he is present and watching over me. I always bring some coins to toss into the fountain and make wishes (see my post on wishes), often shedding a few tears. Last week there was even a little turtle scampering through the fountain and I believe it was Ben sending a message that those wishes will come true! I must remind myself that summer memories also include the summer before his last one, when we had a most magical time at Walt Disney World. I try my Disney best to be optimistic even when I’m sad.

In my mind, July 6 may be International Kissing Day, but for me, it was the first day that I couldn’t kiss Ben. It was the beginning of the end. It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. I was there for Ben, he knew he could rely on me, and there was profound love and trust.

I find myself wondering if I will always struggle on this day. I have learned that today’s fog will lift. I do and will continue to have many days where I remember recall the days in the hospital that, despite the devastation and horrible decisions, were filled with love, music and even laughter. Today is just not one of those days.

Walt Disney World, 2002
The pre-ALS days.