This time of year is always one filled with conflicting emotions. I am beyond elated and relieved that a school year has ended, but there are so many sad memories. Six years after losing Ben, I still find that I rehash events of those days. July 6 is the date I refer to as the day that everything changed- this is the day that Ben went into the hospital. From July 6 until his passing at the end of August, I rarely left Ben’s side as he dealt with a feeding tube, a tracheostomy, pneumonia, infections, a lot of family drama, having to decide how he wanted to live and die with ALS. July 8th was my mom’s birthday. It was never a good or easy day, but spending that day with Ben in the hospital, not knowing what was going to happen to him, made it that much more stressful and compounded the emotion of this day.
Ordinarily, I don’t make plans for milestone dates. I do not punish myself or insist on any kind of ritual of sadness. There have been years that I could barely get out of bed and surrounded myself with Ben’s favorite Disney movies and The Little Mermaid, a film my mom and I had a great time watching together. Sometimes, I have just wanted to stroll through Central Park, feeding the turtles and the squirrels. I accept that I never know how I am going to feel, and I allow myself to follow my mood. I do not generally argue with people who tell me what I “should” do, but I also don’t listen to them.
This year, I made plans to visit my forever friend, Dorie, and her husband Damian, during the time that spanned both dates. When we chose those dates, I did think about the milestones, but I did not feel conflicted about going away. I took Amtrak on July 6, which reminded me of the many long weekends Ben and I took on the train. Ben loved the train- even a seven-hour ride to Vermont! I miss those rides with him and the romantic getaways. During my ride to Dorie’s, I did, however, find myself smiling rather than crying at the memories. Of course, we all find ways to rationalize things, but I believe that Ben would likely be pleased that I was doing something that would remind me of him and of us.
The milestones were definitely on my mind on those dates, but I was okay. I am fortunate and grateful to have wonderful friends who are patient with my sharing of memories but who help me live in and enjoy the present while I keep Ben and my mom in my heart.
I do have to admit that I was torn about buying tickets to see Bruce Springsteen on Broadway on the anniversary of the date of Ben’s leaving the world. I had clicked on every single date and that was the only available date (at a barely reasonable price). It took a while to confirm the sale as I wondered if I could enjoy a concert, or anything else, on that date. I decided that I won’t know if I don’t just go, and hopefully, since Ben loved music so much, I will especially enjoy it through his eyes and with him in my heart. I generally believe in signs, so I would like to think that my finding a ticket on that date was a sign from Ben that it is okay, and I should go. Still, I am conflicted and hoping that this event works out as well and as enlightening as my visit to see Dorie.
The Fox and the Hound celebrated its 40th anniversary last weekend, on July 10. I have been thinking a lot about the quote from the heartbreaking scene when Widow Tweed tells Tod that “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.” This year will mark six years since Ben left the world, and I realized last week while I was away that I am getting better at balancing the memories and the love with being in the here and now and, looking forward. There is a tinge of discomfort at smiling and carrying on with life, but not a sense of guilt or emotional paralysis that leaves me on the sofa. In a way, has become a comfort that as I keep going, there are always memories that keep my loved ones close. They are not always good memories, as in Ben’s going into the hospital, but I will say that more of the love stands out than the bad times or crises.
I have occasionally been told that writing my blog posts keeps me in the past and in grief. I disagree. As I revisit previous posts and look back at how I coped with the milestones over the years, I see that there has been a shift in my thinking and in my embracing of life. I see that I have made strides and have come through my experiences knowing that although my confidence is not strong, Christopher Robin was absolutely right that “You are braver than you believe, stronger than you seem and smarter than you think.”
I hope that this post serves as some comfort and encouragement to anyone experiencing grief. Our timeframes and strategies for coping may vary, and we will probably always navigate unexpected ups and downs, but the memories and love always remain in our hearts.
On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! 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. I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.
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.
Disney’s Hercules opened on this date in 1997. It made me think of the Herculean tasks of caregiving, grief and recreating my life. After nearly six years without Ben, I still find myself thinking I am on my way. I can go the distance. Somehow, I wonder if I will ever get where I’m going and if I will know where I belong if/when I get there.
I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, right up until he left this world. I remain in awe of his bravery and strength.
My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and it did give me immeasurable joy and satisfaction to hear from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions about a book I described but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, Mrs. Miniver. I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!
Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but every mile was worth my while. I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”
Managing grief has been another Herculean task. The ups and downs have been become less jarring, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize and to do things I love, like going to the theater and traveling (with the exception of COVID restrictions). I find peace and inspiration during my strolls through Central Park, where I do see signs of Ben from time to time. Ben remains very present in our apartment in photographs, things of his that give me comfort, and things of ours that bring good memories.
When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years. I have blogged about my memories, and living with my present, but the future remains daunting. I am doing more writing and exploring ideas with regard to caregiving kids, trying to see beyond teaching, which, although rewarding in many ways, is very stressful and a constant reminder of my gut feeling that I was never meant to be in a school building. Then, there is the search for love. My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that, as with Hercules, I know every mile will be worth my while. I would go most anywhere to find where I belong. I’ll keep you posted…
Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s “The Many Adventures of Winnie the Pooh” (1977)
Easter always brings thoughts of the Disney bunnies. It is hard to believe that it has been a year since the COVID19 pandemic began. I still think about how the protocols and worries of the disease would have affected all of Ben’s and my routines and rituals with regard to caregiving. When it comes to rituals and bunnies, Winnie the Pooh’s buddy, Rabbit is the master. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He sees himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises like COVID19 might send him into an utter tailspin. I imagine that the fear of contamination and spreading of the coronavirus would have put Rabbit in lockdown mode before it was ever suggested or required. Rabbit would be the one to try to solve the problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. Although it still feels strange to state it, I am relieved that Ben and my dad do not have this worry. They are free of these constraints.
I think of the strong bonds of friendship that exist between the 100 Acre Woods friends. They understand and accept each other for their strengths and weaknesses. I imagine the 100 Acre Woods as a sort of sanctuary, free of the coronavirus threat. Even Christopher Robin would have been able to visit with his friends in this fictional, blissful world. Still, Rabbit would be the friend who worried and obsessed over the safety and health of everyone.
Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.
What would Rabbit and I do to manage caregiving for Ben during this pandemic? Although chaos became my normal during my years of caregiving for my dad and Ben, Rabbit probably would have valued that establishing routines was our starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. If we were coping with ALS and the pandemic, Rabbit would likely be furious with my inability to keep things neat, but my priority was always to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. All of our routines would have to be scrapped as we focused on staying safe and keeping COVID19 away from Ben. This would have been difficult for Rabbit, but my coping strategy was always just to plow through these conditions and not consider the physical and emotional messiness (which does not mean that they did not take a toll on me). Early on, when even gloves were recommended and sometimes required, I imagine that we would both be so nervous about going outside to run errands, which would have changed our shopping routines and methods for getting supplies. Even now, we would not have allowed anyone inside and our interactions with others- even routine visits from health care workers such as speech and physical therapists would be nerve-wracking, if they happened at all. I imagine that we could not have any paid home healthcare workers traveling to and from our home, which would have made our caregiving tasks more strenuous. Rabbit and I might clash in the way we expressed ourselves, because I tried to see the humor in things, if for no other reason than to make Ben laugh, but humor was never Rabbit’s strong suit. In a small space, we might have to put our personalities aside and focus on the caregiving routines. Our bond would be forged of a shared devotion to Ben and desire to keep all of us safe and uninfected.
This holiday time, as it intersects with the social distancing standards, leads me to reflect on how illness affects connections among family and friends, where it’s not the 100 Acre Woods. I used to try to create a festive environment for Ben and me when Ben was homebound. At that time, there were no widely used computer programs for connecting online, and that’s a wonderful advancement and use of technology. I remember the sense of isolation that Ben and I often felt, not just at holidays. That isolation was not imposed. It happened as the ALS progressed and Ben’s speech and dexterity in typing diminished. As communication became less easy, some family and friends drifted away. Some people simply did not know what to say so they lost touch with us. Some people were more superficial in their friendships, not really wanting to hear about Ben’s life challenges. We had not created routines for keeping in touch on a regular basis. Maybe that should have been done. On the other hand, maybe that would have seemed too forced. I do think about the people I had thought of as close friends who eventually only offered empty comments on Facebook posts about how we were always in their thoughts or how they loved us, or that they were sorry for being bad friends (exactly how did they expect me to reply?). It may not have been social distancing in the COVID19 way, but the distances grew to the point where the friendships now barely, if at all, exist. I prefer to recognize that I am so fortunate that my closest friends were always there for both of us.
Although my sense of order and neatness would have infuriated Rabbit despite my ability to organize and maintain routines, I realize that rituals are extremely important to me. I see people participate in Passover seders and talk of watching Easter services online and having virtual celebrations with family and, although I choose not to celebrate these religious rituals, I feel a bit displaced. Still, I find great peace in my rituals and traditions when it comes to honoring Ben and the things that were unique to our relationship. For example, every day I listen to my Ben playlist of special songs, and I watch his favorite Disney and Pixar films on important dates like his birthday. I keep some items placed in our home the way he liked to see them. Also, without much family connection, my friends have become a chosen family. I have created rituals like baking cookies and making Valentine cards to show my love, and those are very important to me. These routines honor deep connections that transcend sharing physical space together. No matter where life takes me, though probably not as structured as Rabbit would like, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.
In whatever ways you celebrate and with the routines and rituals that give you peace and comfort, particularly at this stressful and challenging time, I wish you a safe, healthy and happy springtime.
Tinker Bell is grateful that Mommy knows how to use Photoshop!
The Princess and the Frog Walt Disney Pictures 2009
Mama Odie (The Princess and the Frog), Recognizing Signs and Finding Direction Through Grief
It has been more than a month since I have written a blog post. I actually missed writing but could not focus on my thoughts. February is a very difficult month for me, and I found that it upset me to restate my sadness over the many sad milestones that occur during that month. I have felt stuck in the past, so connected to the people I have lost, and although I know there is something else out there for me, I don’t know exactly how to move forward or where to go. I know that a lot of it is due to a lack of confidence, and maybe there is an element of the confinement of COVID also confining my outlook, but lately I have been suffering from frustration and even a bit of helplessness and hopelessness. Recently, however, I had some surprising inspiration to break through that emotional barrier.
I admit that I am a believer in signs. Over the years, I have received and written in this blog about signs that I have received, particularly from Ben, that let me know that he is with me. Maybe that’s one of the reasons I love Disney’s The Princess and the Frog. The firefly, Ray, knew deep in his heart that the star he saw was his love, Evangeline. I relate to the way he knows she’s watching him and the way he speaks to her. He sees things through the eyes of the love they had. I get that. Mama Odie may have been blind, but she saw the truth in people and events, and she recognized signs and possibilities.
The last time that Ben and I were around Central Park in the fall of 2013.
Ben and I never spent a lot of time at Central Park. As his ALS progressed and he was homebound, we did appreciate our time outside and in the more level areas of the Park. Over the past few years, I have spent a lot of time in Central Park. First, it was for exercise and then it grew to give me a lot of peace. I particularly loved to spot and feed the turtles. Turtles were animals that Ben and I loved and were a joke between us. We quoted a cartoon turtle that said, “I’ll get there…may take me some time… but I’ll get there.” I remember that one day, during a really sad and stressed time that I specifically headed to a favorite spot at Belvedere Castle to see turtles and feel close to Ben, I found the Castle closed and under scaffolding. Unnerved, I just kept walking, eventually finding a new path that led me to the discovery of a whole new group of turtles. I knew that was a sign from Ben. You may not believe this, and you may disagree, but this makes sense in my mind and it gives me comfort. I also loved to make wishes and toss coins into the Bethesda Fountain. I made wishes for myself but also for the many people in my life who needed some wishes. My Disney heart knows that wishes can come true, even if, as Fairy Godmother says, miracles may take a while.
Turtles soaking in some sunshine near Belvedere Castle
I should say that despite being an animal lover, I am terrified of birds, and even of feathers. I have walked into oncoming traffic to avoid them. On my frequent days of feeding peanuts to my little squirrel buddies, I can be heard telling them to guard the peanuts from the evil looming birds, and I have yelled at and insulted more than one bird that has stolen a peanut away from a squirrel. Bluejays are the worst! Oddly, I began to have interactions with cardinals. I knew that cardinals are believed to bring spiritual messages, but they are still birds. One day, a cardinal landed right in my path and stared at me. It was on a day that the combination of the mask, heat and humidity were really making me ill. I stopped, not knowing how to get around this bird that I wanted to avoid. However, it never stopped looking at me and remained so calm, where most birds would fly away with close human movement. It struck me as so unusual that I even took its picture, said goodbye to it, and carefully skirted around it to leave, still not feeling great but a little distracted from my queasiness. It intrigued me that the bird had not moved, so after I passed it, I turned back and it seemed the bird left as soon as I did. The bird stayed on my mind, which, in itself, was unusual. Actually, the fact that I did not do a quick about-face upon seeing the bird was unusual.
This picture is slightly blurry because I was nervous around this little guy!
A few weeks later, as I was nearing the exit to the Park, a cardinal flew onto the fence right next to me. Again, it stared at me and I stared back. I said aloud (and, fortunately, no one was around) that I knew the bird must have a message for me, but that I didn’t know what it was and that I was really a little afraid of it. I thanked the bird and said it was ok to leave, and as soon as I gave it permission to go, it flew off. I spent the walk home unnerved, thinking that it must have been a message from Ben or maybe my dad, but why, of all animals, would they choose a bird?!
Looking right at me!
I did not visit the Park much for the rest of the summer because I had a lot of trouble with the mask and the weather. I am also a klutz, so a walk in the Park in slippery wintry conditions is just an accident waiting to happen. I began walking again as the weather has improved. I was in the Park on the Sunday of the first weekend of Spring. I was enjoying feeding peanuts to my little squirrel buddies near the Fountain. I looked out on the crowd of people- some holding hands, some dancing, some looking out on the water or just hanging out- and I suddenly felt an overwhelming alone-ness. I felt the tears surging, and I turned away from the crowd. A cardinal flew right onto the branch near me, again, staring right at me. I found myself just staring right back, shocked at my own willing engagement with this animal that would ordinarily scare me. I distracted myself with the squirrels, but each time I looked for the cardinal, it flew to exactly where I looked. This bird was clearly connecting with me. It wasn’t about the peanuts because the cardinal was not fighting the squirrels for the peanuts. This went on for quite some time. That cardinal was not leaving me. I was still fighting a lot of sadness, but did feel somewhat comforted and I told the cardinal that I was ok and it could leave. I crunched up a peanut and tossed it on the leaves for the cardinal. The cardinal dove into the leaves, grabbed a peanut bit, looked up at me, and flew away. I believed that the cardinal was a sign from Ben that he’s with me and I shouldn’t feel alone. Still, it bewildered me that the sign would be from a bird. I don’t often remember my dreams, but before I went to sleep that night, I asked Ben to let me know if he was sending me a message. In fact, he did appear in my dream telling me that he was here and wrapping his arms around me. I woke up feeling assured that Ben had been with me and the experience with the cardinal was truly a sign, albeit a weird one.
I do believe that there are people who have the gift of communicating with spirit guides and with the spirits of those who have passed. For the past few years, I have had an annual visit with a psychic medium named Debra. It began because I always thought it would be entertaining to visit with a medium and losing my dad and Ben made me wonder if I could connect with them. The first time that I saw Debra, the things that she knew about Ben and my dad blew me away. There was no possible way that she could have known some of the things that she conveyed. I enjoy our discussions, her insights and “checking in” with my loved ones. Our annual visits are a gift that I give to myself. They are interesting, fun and enlightening. I do realize that this is not everyone’s cup of tea.
A few days ago, I had a visit with Debra, and I mentioned the cardinals and asked if they were visits from Ben or my dad. She said that cardinals are indeed signs from people we’ve lost. I let her know of my fear of birds and how strange I thought it was that they would take this form. She said sometimes there is a bigger meaning.
We continued to speak and she revealed that my mom and dad expressed that I sell myself short and I need to get out and open new doors and have new beginnings. I talked of my desire to write a book based on my blog and to expand my work with kids, especially with regard to caregiving. I said that I seem to stop myself, and I know that a lot of it is confidence, but also a lack of a firm knowledge of how to proceed and fear of failure as much as of success.
After listening to me, Debra smiled and said that this is the meaning of the cardinal. Connecting to the bird- an animal that scares me- forced me out of my comfort zone. I was willing to take that step because I feel the pull that it is a sign from Ben or my dad. Finding the confidence to pursue the things that I want to do is also outside of my comfort zone. Indeed, the cardinal was more than the already welcome message that Ben was with me. It was guidance from my mom, dad and Ben that I can, am able to, and should step out of my comfort zone towards new beginnings and things that I want to accomplish.
Debra suggested that I return to the Park to do some writing, which is something I haven’t done. In general, I’m not much of an outdoorsy type. However, that sounded like a good idea. She said not to be surprised if I am joined by cardinals. I have to say that the idea of cardinals accompanying me on this journey seemed fun and almost magical. Yesterday was a drizzly kind of day, so it wasn’t a day to sit in the Park and write, but I did go for a walk. I chuckled to myself as I wondered if I would indeed see another cardinal now that I understood and embraced their message. Sure enough, within a few minutes of arriving at my usual spot to feed the squirrels, a bright red cardinal perched itself on the fence a few feet away from me and stared at me. It made me smile under my mask. He then flew right in front of me, where I took this picture. He then went onto a branch, and we watched each other. I continued to feed my ever-growing crowd of adorable squirrels, and we also kept watching each other. Suddenly, as I was about to crush a peanut up for him (I didn’t think a bird could handle a big peanut in a shell), he flew down onto the pavement near a peanut I’d tossed for the squirrels and looked up at me. I actually said aloud that it was ok, he could take it, and he took it in his mouth, flew onto a branch, looked at me, and then flew off.
Stood right in front of me!
I sent a text with the picture to Debra, thanking her for our session and letting her know that I had, in fact, been joined, and she wrote that I should “keep going to the Park…new beginnings.”
Life is full of wonder, unexpected signs, twists and turns in our paths. I never would have believed that a cardinal would send messages from Ben and also offer guidance. I never thought I would look forward to visits from any bird (though I still told the other birds to go away). I am always comforted by the thought that my loved ones are still beside me, though I am realizing that feeling their absence also keeps me embedded in the security of my memories and the past. I have felt so stuck and not content with where I am. Mama Odie says, “You got to dig a little deeper. When you find out who you are, you’ll find out what you need.” The cardinal has let me know that Ben, my mom and dad are nudging me forward, guiding me to challenge myself to learn more about who I am, do new things, explore my ideas and have some new beginnings. They are also letting me know that they will remain with me, which is something that I need to know in my heart. I feel inspired and happier knowing that they believe in me and want this for me. Tomorrow is supposed to be a beautiful day and I am planning to head to the Park to see how I feel about writing there. Just like the new paths I take at the Park reveal new views, this is one baby step on a path to better understand who I am now meant, and able, to be.