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.
Third interaction.
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.
As Timon tells Simba in the animated Disney film The Lion King, “Sometimes bad things happen and there’s nothing you can do about it.”
Today marks seven years since my dad left this world. I can’t say if it feels like more or less than that. What I do know is that it is a painful milestone date, along with many other painful milestone dates that make February a difficult month. I woke up unusually early and Tinker Bell has been at my side. She is very sensitive and attuned to my feelings, and although she is not cuddly or a lap cat, she even crawled and slept on me after I had some recent surgery. I guess she knows that today is one of those sad Mommy days.
I have not moved beyond vivid memories of this day seven years ago. There was a terrible snowstorm and I called the hospice nurse’s station to check on my dad. They said they were about to call me because his status changed. They also let me know that all transportation- trains and taxis, both of which I needed- was stopped due to the snow and I would not be able to get there. In November, I had taken a leave of absence from teaching and spent every single day for a few months with my dad and then, after returning to work in January, traveled to see him every weekend for what unexpectedly turned out to be his last few weeks. Daddy was afraid to die and I was utterly devastated that after being with him almost every day, I couldn’t get to him at this critical time. Although he was not conscious, I asked the nurse to put the phone to his ear. I told him that I loved him, that he was the best dad and that he should go if he was ready, that I would be okay. I knew that would be his worry. I left work to go home and see if, despite the warnings, there was anything I could do to get to the hospice. As I opened the door to the apartment, the phone rang. He died.
For the remainder of the day, I went through motions with phone calls and funeral plans. I wrote notes about my dad for the rabbi, a chaplain from the VA hospice who my dad liked very much and who kindly agreed to perform the service. I cried as I looked at the materials I bought and would not get to use to make my dad Valentine card and birthday cards.
Struggling with my own emotions, I also realized that for Ben, losing my dad was losing the only person who was a true dad to him, but it was also facing the reality of death, which he had been trying to deny as he experienced the progression of his ALS. I remember so clearly how upset Ben was that he couldn’t hug me to comfort me. My dad used to tell me that it troubled him that I was going to lose him and Ben, likely within a short period. It bothered me when he said it, probably because I did not want to think about that future. However, I cannot deny that when I lost my dad, I acknowledged that I could not escape the reality that I would also lose Ben.
It’s ironic that given how much my dad loved dogs, and we were a family that always had a Schnauzer, the quotes that resonate today are from a cat movie!
My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.
“Nobody messes with your dad.” – Mufasa
I was always a Daddy’s girl. I know that I was my dad’s whole world, and I was constantly reminded of that when he was in the hospital and then the hospice. It seems that he spent much time telling anyone who would listen about me. I think that despite the loving aspects of caregiving for a parent, it is hard for any child to essentially take on the role of parent to their parent. Growing up, I firmly believed that no one would ever mess with my dad. He was a Marine! Cancer messed with my dad and I could not protect him. It was difficult to see him struggle with cancer, particularly because he had a very defeatist and negative attitude. It was exhausting to be a constant cheerleader as he counted down to his demise. Fortunately, I did inherit his sense of humor. As an adult, I could reason that this was simply the way he coped with his situation, but the little girl in me said that he was my Daddy- he was supposed to be strong! Ultimately, cancer won, and it was heart-wrenching to watch. In my memories, he will always be the Daddy who protected and loved me with all his heart. Nobody or nothing will ever mess with that.
“He lives in you.”- Rafiki, talking to Simba about Mufasa “Remember.”- Mufasa
Without a doubt, I see within myself reflections of my dad. I learned so much about love, compassion, respect and patriotism from my dad. Although my dad had so much confidence in me, I also possess his ability to identify (or imagine) obstacles and things to worry about that sometimes hold me back. I try to remind myself that my dad would believe in me.
Caregiving was challenging and at times downright ugly, but what I learned from those experiences and memories is profoundly meaningful and indescribably loving. It also let me see positive things about myself. My dad had complete trust in my ability to take care of and advocate for him. Now, I want to make him proud and to let him know through my actions that he is remembered and loved in every step I take.
Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!
“Whenever you feel alone, just remember that those kings will always be there to guide you and so will I.”- Mufasa
In these days of COVID, I feel especially isolated and alone. Given the state of the world, I imagine the conversations that I would be having with my dad about the tragedy that has befallen this country. I know that he would be devastated by the affronts to our democracy by the thankfully former administration that will sadly leave a lasting stain our country’s history. I miss our phone calls, though I know that he would have been screaming and I believe that it would have made him physically and emotionally ill.
In these and other challenging or puzzling times, I still turn to my Dad for guidance and wisdom. I share some of his wisdom with my students, reminding them that you get more with honey than with vinegar, and that it’s important to be able to laugh at yourself and take a joke. Sometimes, it’s memories of conversations we had that help me to move forward. Sometimes, it helps to know with all my heart that he is watching over me. And sometimes, on days like today, even with all the love and good memories and guidance, the only thought in my head is that I love and miss my Daddy.
Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014
Today is National Hugging Day. Seems there is a National Day for everything. I posted this photo on Facebook in honor of the occasion. It’s one of my very favorites. The story is interesting and, I think, worth sharing.
Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, he still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. After all, I was always the one who got super excited to see my friends and he generally laughed at me. In this photo, we had just entered the room and were greeted by Mickey. This was during the brief window of time that Mickey spoke (electronics, it wasn’t good). I was so shocked to hear him and couldn’t stop laughing.
What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful. I needed that hug. I needed to believe that Mickey could help.
I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.
I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.
Hugs were so important to us. Since the characters don’t speak, hugs were a way that they communicated. When Goofy saw Ben get emotional, he didn’t know what to do so he kept hugging Ben and then trying to make him laugh, which he did. Hugs are powerful.
This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.
I always hugged Ben, particularly when there were no words for what he was feeling, but one of the things that upset him as his ALS progressed was that he could no longer give hugs. Ben gave great hugs! He was a big, burly guy and would just envelope me. I still remember him saying that he felt terrible that he could not hug me when I struggled with my Dad being ill and I learned that my dad died. He couldn’t hug me after I returned from the funeral.
I think that COVID 19 has shown us that we cannot be dismissive of gestures like hugs. I miss them. Tinker Bell gets lots of them, though she would tell you that she doesn’t love hugs at all.
I send everyone a big virtual hug of compassion on this National Hugging Day! Let’s hope that next year is different.
