I dutifully counted down the days on my Halloween calendar figurine and here we are- today is Halloween. My fourth without Ben. Being home with bronchitis is adding to my melancholy. I did find comfort and joy in using that figurine. It made me smile to think about how Ben loved it and it felt good to honor that tradition. Stuck inside, I won’t see kids dressed up or give my students candy, though that will happen when I return. I will look at our photos and videos, listen to my Walt Disney World Halloween music, and reminisce about how much fun we had at Walt Disney World on Halloween. Halloween was truly magical there- after all, Ben proposed to me on Halloween at Walt Disney World. It was perfect!
I did bake Halloween cookies and make Halloween cards with a photo of Disney. As I’ve said before, baking and decorating cookies is like my therapy. I am able to relax and get lost in the whimsy. I tried hard to embrace my decorations (click here for that post), acknowledging that I was able to begin to embrace the Halloween spirit that, until this year, had left me along with Ben. Now, I’m more of a participant in the holiday, but I don’t feel the gleeful whimsy that I felt with him. I look at footage from Walt Disney World’s Mickey’s Not So Scary Halloween Party and although part of me would love to experience it again, I wonder if I will ever again be able to attend that celebration.
Without distractions at school, I’m surrounded by only memories, albeit good ones. Every year, I’ve made a calendar that is a collage of favorite photos from Walt Disney World. It was a very positive process to make these calendars. I made them for Ben when he was here, too, since he loved to be surrounded by our photos. As you can see, October is filled with Halloween memories. I rejoice in them because Halloween is a treasured part of our relationship. At the same time, I grieve for Halloweens and other events, and even non-events, that we won’t have. And, over the past several months, I’ve struggled with anger that he was cheated out of so much life.
The October collage on my calendar.
Understandably, the most poignant memories were during our visits after Ben’s ALS diagnosis. I think about how Ben was embarrassed to meet Buzz Lightyear when he was in the scooter. Ben loved Buzz, but after ALS began to weaken him, he said he didn’t want to meet Buzz because Buzz was a strong super hero. I think he agreed to meet him more for me than for himself, though he thoroughly enjoyed watching Buzz interact with the kids on line and he had a child’s excitement. He was able to walk a bit with his cane at this point, and he wanted to stand with Buzz. We were never much for dressing up for the holiday, but Ben loved the Buzz shirt we found and I wore Minnie Halloween ears. Buzz made such a fuss over Ben’s shirt and he made Ben laugh, which made me so happy. Those are the important and beautiful memories. Ben truly did embrace life while facing death. Yes, some of that was denial, but much of it was inner strength and determination, and I believe it helped him to navigate life with ALS in a positive way.
I’m still proudest of our summertime Halloween- our last but most magical visit to Walt Disney World. Here’s a link to that post. I hope that it offers some inspiration to anyone struggling.
Ben did say that when the time came, he was going to be a grim grinning ghost at the Haunted Mansion. I hope he is and that he is having a ghostly good time.
I wish everyone a Happy, Not So Scary, and Healthy Halloween!
(I wrote this late last night) Today, October 27, is my birthday. My fourth birthday without Ben. I still seem to measure time that way. It’s still emotional to think of celebrating events without him. I can’t seem to feel happy. I want to indulge in that childish delight about a birthday, but I can’t shake the sadness. I always struggle on milestone events with not having Ben or my mom, dad and grandma- the people I was closest to- with me. Yet, it’s not just that, or guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten. I don’t feel comfortable celebrating myself and, although I am so grateful for good friends and birthday wishes, I am much more comfortable celebrating other people. Maybe that says something about my self-esteem as much as it does about grief, which is definitely something I need to think about.
I made plans with a good friend to go to the theater, which is always one of my favorite things to do, and I preferred to think about a show rather than my birthday. It was a nasty day with a nor’easter, which seemed fitting for my mood. We saw Oklahoma! At St. Anne’s Warehouse in Brooklyn, and although we were looking forward to exploring DUMBO, a neighborhood I had never visited, the storm limited our plan. I knew to expect that the show was a dark interpretation, which was sort of unusual for this musical, but also appropriate for my mood. Throughout the day, I got sweet texts and calls and posts on Facebook, which touched my heart. I really wanted to be happy, but trying to act happy actually made me sadder. Ironically, if it had not been my birthday, it would have been a perfectly great day. Maybe the March Hare was onto something when he talked about a very merry un-birthday. I find joy in so many things and from so many people. Those are my “un-birthday” gifts.
I think about the wonderful birthdays I had with Ben. I loved that he always wanted me to feel special on my birthday, and he often planned little surprises for me. That was more about the romance than about the birthday. Now, I feel awkward making or being a part of the planning of my birthday plans. For so long, I defined myself by the way I cared for my dad and Ben. I planned surprises for Ben and took opportunities to celebrate him and us whenever I could find them. I need to learn to feel the confidence and comfort in taking care of and acknowledging myself.
Once again, after a good cry, I comforted myself with the memories of birthdays with Ben. I’ve shared these in prior posts, but please indulge my sharing some of my favorite Walt Disney World birthday memories with Ben:
The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.
Mickey has Four Fingers!
The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.
Mickey congratulated us on our engagement!
Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.
The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.
Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!
Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!
Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat. His attitude was incredible.
And then there were the magical birthday surprises that were not spent at Walt Disney World. There was a time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.
I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve often felt his presence and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right. Maybe it will feel better on a very merry un-birthday!
At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!
Disney’s Animal Kingdom- 2001. Ben was psyched to meet Baloo!
Disney’s The Jungle Book celebrated the anniversary of its 1967 release just this past week on Thursday, October 18. Of course, I had to re-watch this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. It is also a sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! During my viewing this time, I thought about how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.
Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.
I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to hospice and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy, needing 24/7 nursing care. This was not an option we liked but it was one we had to accept. I could relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways, but love and devotion kept me at his side. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.
I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! But, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” And yet, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. Try to focus on those things when the stress becomes severe and you start to forget who you were before you were in a caregiving relationship.
As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?
I’ve written a lot about how important Halloween was to Ben and me. Our favorite time to visit Walt Disney World was during the fall when we could celebrate my birthday and Halloween. I still hear Ben singing along with the Boo to You parade at Mickey’s Not So Scary Halloween party. Most exciting was that Ben proposed to me on Halloween at Walt Disney World, which was absolutely perfect, but now adds a melancholy of the holiday.
Fall has become a strange time for me. The beginning of a school year has the shadow of memories of the anniversary of losing Ben. Fall, which was our favorite season, largely because of Halloween, does not hold the same sense of whimsy. I don’t feel the same dread of seeing Halloween decorations and candy assortments that I did for the past few years. I do tend to think about how Ben and I would have been thrilled to see Halloween invade the shops, and how I would have been taking photos to text to him, once ALS had progressed and he was homebound. I have lacked the enthusiasm for the holiday that I used to have, but I found that this year, I missed feeling that enthusiasm.
I have not decorated the apartment for Halloween since Ben has been gone. I have kept our Halloween things in storage. The last time I saw them was when I brought them to Ben’s hospice room. His doctor suggested that bringing things Ben loved to his room would make him more comfortable. Although it was August, celebrating Halloween in the summer was not a new idea for us. After all, we had Halloween at Walt Disney World in July in 2014, thanks to the wonderful Walt Disney World team (click here for that post). Ben did get such a kick out of seeing our Disney decorations in his room. Decorating the room was also a soothing distraction for me- it kept me busy and let me focus on creating smiles rather than dwelling on Ben’s imminent departure from this world. I haven’t wanted to display those decorations since that time, but Halloween remains a Ben and Disney kind of holiday for me. Although I cannot resist peeking at the Halloween section of the Disney web site, I cannot add to our collection without Ben because it almost feels like a betrayal. This year, I considered buying a “Boo to you” mug, because Ben loved that parade so much, but I did not think it would bring me much comfort or joy. Maybe one day, but not yet.
This year, I was looking at a recent catalog from The Vermont Country Store, one of our favorite places. We spent hours there each time we went to Vermont and we frequently ordered online from the store. I have continued to order many things- they have such a fantastic collection of items, from nostalgic to practical to whimsical and fabulous- but I had not ordered any of their wonderful Halloween items. I always feel a combination of joy and sadness as I look through those pages. Choosing Halloween items for our collection was a very special event for Ben and me that is painfully lonely by myself.
As I perused the catalog, I have to say that I perked up when I spotted tiny Halloween Hurdy Gurdy music boxes. One of them played Grim Grinning Ghosts. Ben so loved the Haunted Mansion and the song. He actually used to joke that when he left this world he was going to become one of the Grim Grinning Ghosts at Walt Disney World. He also said he would visit me, and I do believe he does. I’ve written about Ben’s love of music and how much he loved to listen to Disney theme park music. He also loved music boxes and I gave him a couple as gifts over the years. I had to have this little music box. I also discovered a Charlie Brown Halloween bed sheet set. Ben would have loved them. We loved It’s the Great Pumpkin, Charlie Brown, and “I got a rock,” was one of his favorite expressions. Once, when I went on a vacation without him, I picked up a tiny rock to bring home to him. My friend questioned it and I said that Ben would understand. Sure enough, when I got home, I placed the rock in front of him and he laughed and exclaimed, “I got a rock!” I decided to order the sheets. Once on a shopping roll, I also ordered two little figurines- retro inspired little girls dressed as cats with pumpkins. I was not sure how I would feel when these things arrived, but I felt like I had made a good decision to order things that would remind me of Ben but that would be brand new.
When the package arrived, I felt nervous. I tried to ignore it for a few hours, but I finally opened the box. First, I saw the music boxes. I played Grim Grinning Ghosts and cried as I turned the crank and listened to the tune, wishing Ben was with me because he would have loved it. I bet he would have figured out a way to make it a ring-tone. It devastates and angers me to think about all that he misses in life, and how much time was taken from us. It may seem silly that a tiny music box would make me feel so sad and lonely at the same time that it conjures such loving memories, but it’s those little shared joys that carry such huge emotion. The Charlie Brown sheet set is adorable, and he would have loved them, too. I have not yet put them on the bed. I stare at them in their package, and I’m almost bracing myself for using them. The little girl figurines are very sweet. My cat, Disney, is always happy to see cats represented since I have so many schnauzer things. I know Ben would approve of them, but they are definitely more of a “me” decoration, which is probably a good thing.
With these new decorations, I began to think about all of the things I have in storage. I still was not prepared for anything that I had brought to the hospice room. I decided to go to storage yesterday to bring back my Mickey Mouse Halloween string of lights- they are similar to Christmas lights but orange Mickey Mouse faces. When I was across the street from the storage facility I started to panic and choke up. I reasoned with myself that if it was too upsetting, I would just leave. I opened the door to my space, grabbed the lights and then I saw the box with our big Disney Halloween snowglobe. At first, I put it in the bag to bring home, but it started to upset me and I put it back on the shelf. Why were the lights okay but the snowglobe wasn’t? I can’t say. I never know what is going to trigger the tears and wave of grief. Since I had made it this far in my quest to retrieve some Halloween things, I decided to open the Halloween box of Disney decorations. I immediately had visions of how things looked in the hospice. I do not know if I will ever be able to enjoy those things without Ben. I did find the box that contained what turned out to be a very special gift that I got for Ben- a Mickey and Minnie Halloween countdown figurine. I had gotten it for Ben as a surprise and I set it up by his desk so he would see it when he woke up one morning. He texted me with such delight. Every morning before I left for school, I would change the number on the figurine, and if I forgot, he would text me to remind me! At that point, ALS had taken too much of his dexterity and he could not change the numbers himself. I thought about how much he loved this little figurine that I’d gotten simply as a way to give him some joy and chuckles when he was homebound. It was something that I intentionally did not bring to the hospice room- I was not going to summon any notion of counting down time. Impulsively, I put it in my bag to bring it back home, and then, I changed my mind, thinking it would be too upsetting. In the end, I took it home, thinking that I would see how I felt once I had displayed it. There were many tears when I took it out of the box, but the memories of how happy it made Ben are very good.
Last night, I put the Halloween lights on and set out the countdown figurine. I will change the day every day, as Ben would want me to do- 31 days till Halloween, in case you’re counting or curious. As I see it, I am keeping a tradition that was important to him and to us. The hard part is not knowing what will be comforting and what will be unnerving, but I channel my inner Dory and “just keep swimming” through the emotions. Halloween will never be the same, but it feels like I’m finding a way to make it mine while I include Ben, too. If, in fact, he is a grim grinning ghost and he comes to visit, I think he will be happy to see it. I hope so.
2012- Main Street on Halloween was one of our favorite things to see.
Yesterday, I went to see New York City Ballet perform Jewels. It’s one of the first ballets I ever saw. I saw my first NYC Ballet, The Nutcracker, at age three and was enthralled by ballet from that young age. I read about Jewels and my mom took me to see it at Lincoln Center. How lucky was I? Going to the theater or ballet is my favorite activity and my most loved way to lose myself and feed my soul. As I walked to Lincoln Center, after making a last-minute decision to get a ticket, I thought about my caregiving days. As Ben’s ALS was progressing and he was nervous about being alone, I could not simply make a quick decision to go to the theater or ballet. It had to be planned in advance and Ben had to negotiate with his daughter to stay with him. I went from being someone who saw everything to someone who barely knew what was on Broadway. It was a choice I made with no regrets, and I can still look back and know that I did the right thing for Ben and for me and for us, but I also admit that I did not take care of myself, physically or emotionally.
As I watched the ballet, I thought about how I can now spend my time as I choose. Even after three years, I’m still not entirely comfortable saying that. I don’t want it to be construed as my having any sense of relief that I am free from a burden. It was hard work that was also loving and meaningful, and unquestionably the most important thing I have ever done, although I did lose a part of myself in the process. After I lost my dad and Ben, returning to the theater and ballet helped me distract myself from grief, sort through feelings, and rediscover myself. There were and there continue to be times when events are not as fulfilling and enjoyable as I wish they would be because I profoundly feel Ben’s absence. But, I have established new normals, new routines and an evolving sense of myself. The arts are the way I take care of myself- I can think, imagine, reflect and just enjoy the magic. I feel fortunate that my passion for the arts has always helped me to heal and grow.
When I think back on my caregiving days, I remember that I constantly struggled with feeling detached from life. I tended to put caring for myself aside, always concerned that worrying about myself was being selfish. Of course, my indulging in arts events seemed so trivial compared to Ben’s battle with ALS. But, as Ben’s needs increased and his denial of that persisted while the devastation clearly affected both of us, I grew more isolated from people and things I loved and I became resentful, angry and frightened. Reconciling those negative feelings and the guilt for feeling them has not been easy.
Throughout my caregiving days, the people around me told me that I HAD TO take time for myself. It really irritated me, because it was stating the obvious but also felt impossible. I could not voice my need to take care of myself. In my mind, since my dad and Ben were ill, they were the ones who mattered. On the occasions that I was able to go out, those things didn’t offer the same satisfaction that they did before, because I never went with Ben, I felt guilty for going out and because I was worried about what was going on at home if I was not there, and lamenting what I missed: the life we had, who we were before illness took over, the things that I, and we, couldn’t do.
It was through our love for Disney films that I discovered my greatest source of self care. Ben and I loved to watch Disney movies, and what I found was that the films were more than simply distracting and entertaining together time. I was seeing the films in a whole different way when I watched them through the eyes of a caregiver. They were shedding light on my caregiving situation. Disney films let me feel understood because they tapped exactly what I was feeling and gave me perspective on a situation that was very daunting. They were simultaneously giving me a much needed break from reality and letting me think through my feelings about my reality. While having someone stay with my husband while I went out was sometimes possible, though less and less ideal, I realized that I was so busy thinking that taking care of myself meant planning a major outing, and dwelling on the negatives like the help that I didn’t have, that I didn’t see that taking time to watch a Disney film was also time to reflect and enjoy my own company right within our apartment!
What turned out to be the most valuable thing I did for myself was that I began keeping a journal of the Disney quotes, films and characters that made an impact on me and I wrote about how they related to my experiences in caregiving. Writing was always a passion of mine, but I stopped writing in my journal because I felt like I kept repeating the same issues without finding solutions. By creating this journal, I unexpectedly combined my love of Disney and writing with my caregiving, and held onto a vital part of myself without having to leave home.
Collecting and writing about Disney things gave me an opportunity to reflect on my experiences in a way that was honest about the not great people and things, but also reminded me of why I continued to be a caregiver: love, dedication, a personal desire and sense of responsibility to do the profoundly meaningful work on behalf of people I loved who needed me. As Cinderella said, “they can’t stop me from dreaming.” And, when I began to think that my quotes and experiences could at some point be a book or blog, I had something positive to think and fantasize about and plan for in my future. It took a year, but I did eventually launch PixieDustForCaregivers.com. It has been an invaluable way to take care of myself, heal and connect with other caregivers.
Sometimes, even very small actions provided a huge dose of self care. For example, the thermos of tea that I drank on my daily 2.5 hour train ride back home after visiting with my dad in hospice became my precious “Abby time” to reflect, listen to meaningful music and read. Yes, my phone was in hand for texts and issues that might arise, but each sip of tea allowed me to take a deep breath and, as Frozen’s Elsa said, “Let it Go!”
A requirement for earning my certification as a caregiving consultant was to create a webinar. Since a significant issue during my caregiving days was the concept of losing myself while caregiving and knowing that I was also going to lose Ben, and I have heard similar anecdotes among other caregivers, I decided to create a webinar exploring this theme. Finding Inspiration and Protecting Your Identity During Caregiving explores ways in which I maintained my identity and tapped important parts of myself, often right at home. There are ideas for finding inspiration, protecting your identity and how to make your plans happen. You can see the webinar by clicking here to view it on Caregiving.com.
Today, I will see the new Broadway show, Pretty Woman. A weekend of the arts always does wonders for my soul. And, as I discovered, so does caregiving. Now, I am so proud to have earned my certification as a caregiving consultant. I’m not exactly sure how I’m going to use it, though I know that I one thing I would like to do is work with children who have a parent or family member with ALS. The important thing to me is that I have learned from my experiences, I continue to learn about myself and I protecting my identity and honoring Ben and my dad.
What are you doing for yourself? Please leave comments with your questions, comments, revelations and/or struggles.