ALS

Sleeping Beauty and Lessons in Caregiving From The Fairies

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Today marks the anniversary of the 1959 release of Walt Disney Productions’ Sleeping Beauty.

With the upcoming anniversary in mind, I watched the film last weekend. I have to admit that my favorite characters are the three fairies. In fact, after my cat Disney passed away and a new, small young cat and I adopted each other, I thought about naming her Merryweather, but it just didn’t flow off the tongue. Instead, I named her for another feisty fairy- Tinker Bell!

There is a scene when the fairies brainstorm ways to counteract the curse that Maleficent has placed on Princess Aurora. While Merryweather has the idea of turning Maleficent into “a fat old pop-toad,” Flora reminds her that their magic can only do good to bring joy and happiness.

Fauna believes that Maleficent probably isn’t very happy because she doesn’t know anything about love, or kindness or the joy of helping others. In the story, the three fairies decide to give up their magic and their identities and move to a secluded area in the forest to take care of Aurora until her eighteenth birthday, to keep her safe from Maleficent’s spell. Their entire lives turn upside down. They put Aurora’s needs before their own. That’s a scenario that is familiar to many caregivers. I watched this movie often while Ben’s ALS was progressing but I don’t think I saw the connection at that time. I think that I was too entrenched in the difficulties and what I thought I was doing wrong to see that the love and care in caregiving were always coming through and were nurturing Ben and me.

In my own story, when Ben was diagnosed with ALS, although he lived in denial about its progression, we went crisis to crisis and began shifting things in the apartment as necessary. I had to take many days off from work to help him or just to provide emotional support if he was having an anxiety attack. There were a couple of times that I thought my job was on the line until my principal helped me to arrange for family medical leave. I was tired and stressed, but that was not a priority. There was sometimes tension between Ben and me because I was having a difficult time juggling full-time work with full-time caregiving and Ben would not admit that it was difficult and that he needed more care than I alone could provide.

When the fairies were scrambling to make Aurora a beautiful birthday cake and dress without the use of magic, I thought of the many times that I would experiment with foods and the Vitamix, or help Ben to devise some kind of contraption to help with his lack of dexterity. The fairies wanted to surprise Aurora with a party, finding ways to get her out of the house so they could decorate. I thought of the many nights that I waited until after I had put Ben in bed to decorate the apartment for holidays or Ben’s birthday, so he would awaken to a surprise. I lacked the wand, but like any caregiver, I had to create a kind of magic to make life easier and entertaining. Only in retrospect can I see how it may have exhausted me, but it also fueled me.

We all have to deal with our Maleficents. These were the unreliable family members or even the completely unhelpful but judgmental health care professionals. Like Merryweather, I had some spirited fantasies, but they were more along the lines of banishing them from our kingdom! Alas, I, too, had to focus on the caregiving and vent to my friends the way Merryweather vented or fantasized aloud to Flora and Fauna.

Taken at Walt Disney World in 2002, the pre-ALS days.

As I look back at my caregiving days, I realize that although it was the most difficult work I ever did, it was the most important and loving work, too. The fairies were entrusted with Aurora’s life and they did whatever they had to do to protect and care for her. I was not as selfless as the fairies-  there were times that it made me angry and resentful to have to juggle so much, especially when Ben was not acknowledging that his ALS was progressing and I was losing my ability to “just keep swimming.” At the same time, I also would not have had it any other way. Ben knew that about me and I knew that about myself. Caregiving let me see that I found the most satisfaction and joy in showing love and kindness while helping Ben and my dad.  It wasn’t a matter of feeling happy all the time. In fact, I was not happy to Ben – and my dad- decline and to see our lives and future disappear. However, I felt purposeful and proud that I was the person they knew they could count on to always be there for them.  I realize now that I had the most true sense of myself when I was caring for and bringing joy to them. Although those days are behind me, I often reflect on them, and looking back through the lens of Flora, Fauna and Merryweather remind me of the valuable life and love lessons of caregiving.

Another favorite part of Sleeping Beauty is when Aurora tells her forest friends about the prince she sees in her dreams. She says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust for cures for ALS and all awful illnesses, and for love and all good things. I hope you do, too, and I hope your wishes and dreams come true.

Thank you, Flora, Fauna and Merryweather, and Happy Anniversary, Sleeping Beauty.

Walt Disney World, July 2014

Happy National Hugging Day! Who Needs A Hug?

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Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

Today is National Hugging Day. Why not? There’s a National Day for everything!

Ben gave the best hugs. As his ALS progressed and his arms became weaker, he could no longer hug me. I remember, in particular, that he felt terrible that he could not hug me when I got the phone call that my dad had died. I remember being afraid to hug him tight, too, because everything felt so heavy to him. It’s strange that a day celebrating something joyful like hugging should trigger sadness, but that’s the thing about grief and loss. I miss Ben’s hugs.

Fortunately, there are so many good memories, too.This picture is 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, Ben 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. I was always the one who got super excited to see my friends. In this photo, we had just entered the room and were greeted by Mickey. He actually spoke to us. I was just shocked and he reacted with surprise at my shock, so I started 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 likely 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.

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 send everyone a big hug of compassion on this National Hugging Day!

Two Goofy guys! July 2014

What Merida Knew About Coming Through Grief And Seeking My Destiny

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I never thought of myself as a brave person, though as I’ve reflected on my experiences in caregiving, I have often turned to what Christopher Robin told Pooh: You are braver than you believe, stronger than you seem and smarter than you think. I have reshaped my life as I have looked towards the future, and I have forged those steps, small and slowly paced as they may be.  At the same time, I have wondered about my destiny. There are things that I would like to do, but there are things that have not come together. This has led me to question my direction, success, and how I define my life.

After several years of caring for my dad and for my husband, Ben, losing them also meant losing a large part of my identity as a caregiver. I was not only grieving their loss, but also grieving what had revealed itself to be a significant part of myself.  I was surprised to realize that I missed being a caregiver. Although it was challenging and fraught with tensions and sadness, it was the most meaningful and loving work I had ever done. While I floundered about what to do with myself without the role of caregiver, I came to embrace that caring for people is who I am, whether as a caregiver or a teacher. I channeled Merida and determined that this was my destiny- the purpose of my life- and I had to look inside myself and see that in a positive way. I pursued my certification as a caregiving consultant, though I was never exactly sure how I would or if I would professionally put that skill to use. As a teacher and a person who loves to be around children, although Ben and I had no children together, I often thought about children who were watching a parent with ALS or any other terminal disease. I volunteered with my local ALS chapter to conduct an event for children with a parent with ALS. We did crafts projects, they had pizza and ice cream, and everyone had a chance to talk. I was invited to speak with a group of ALS caregivers to share my experience, try to answer their questions and offer encouragement. I wanted to do more events, and still hope that will happen, but the organization focuses on other important services.

I discovered another wonderful organization called Hope Loves Company. This organization offers programs- particularly weekend camps- for families affected by ALS. I volunteered to do scrapbooking workshops with children at two of these camps, and those have been fun and rewarding. It’s both heartwarming and heartbreaking to look at the photographs that the children put into their scrapbook and to hear their memories and experiences. These camps offer a unique and invaluable opportunity for children who have ALS in common to be with others who understand their situations without explanation. Since many return to camps, the bonds established among children and adults are strong. I feel grateful to be a tiny part of that. I hope and plan to continue to volunteer with Hope Loves Company, though the camp locations are a bit of an obstacle.

I tried to convince myself that I was embracing my destiny, yet I was not feeling the sense of fulfillment I would have expected. Maybe teaching and caregiving are simply well aligned to my personality. Teaching is my current career, and it is rewarding, but there has always been a tug within me to do more. I feel positive about my blog and the feedback that it brings joy, comfort and guidance to readers, but have been feeling frustrated and stressed that I need to expand it without knowing exactly which way to go. The volunteer opportunities to reach children who are caregivers have felt like a genuine movement towards my destiny. I have struggled to find a perfect fit, though my background in arts, education and teaching clearly lend themselves to working with this audience. I have toyed with the idea of starting a meetup group for children who are caregivers, but the obstacles leave me somehow stymied. I continue to brainstorm with myself and others about ways to reach children who are caregivers. I have frustrated myself that I can’t seem to get where I want to go, and that has left me wondering- or even worrying- that I don’t know my life’s destiny. I skeptically wonder if the whole idea of a destiny is just a Disney kind of ideal, yet I thrive on Disney dreams and wishes. I have not been able to let go of the idea that there is more that I am meant to do, but I have felt lost, and without confidence, about how to move forward. I have questioned if I have the ability to move beyond dreams and creative ideas.

Last summer, as I was doing some planning before the school year, I thought about my population of students. Over the years, I have seen that many students are caregivers, either for their younger siblings or for a parent or other close relative who is ill. These are the students who sometimes attend class and fall asleep or cry with their heads down. Or, they may be the students who act out with negative behaviors. Their grades sometimes suffer and academics keep moving down their list of priorities. These were the students whose attention I got when I mentioned taking care of my dad or Ben. They were students who loved the opportunity to do an art project and express themselves. I was someone whom they knew understood their experience.  It occurred to me that while I was searching for ways to help children, I had children right in front of me who needed guidance and compassion.

I spoke to my principal about reaching out to kids who are caregivers, and at his suggestion and encouragement, formed a club designed for kids to participate in crafts and activities that let them care for themselves and for others. I talked to the guidance counselors and some teachers about my club so that they could suggest it to students who might benefit. The club has brought together kids who want to make friends, who may be a little shy, and are also interested in volunteer opportunities so they can help others. We have been doing crafts activities and exploring volunteer opportunities. Unfortunately, an after-school program is not always feasible when a student has caregiving experience. I remember running home as soon as school was over to take care of Ben and calling my dad on my way home to check on him, too. The club was a start, and that was good, but I kept focusing on what I was NOT doing and that I was not exactly fulfilling what I had determined was my destiny. I need to learn to work on that in myself.

After the Australian wildfires, students came to school very upset about the suffering animals. I am an animal lover and was also devastated. I approached my club members about doing a school fundraiser on behalf of he animals. It was short notice, but there was a school play coming up in just under two weeks, and I thought it was a perfect opportunity to engage students and their families. I was delighted to see the kids come together with such enthusiasm, along with other former and current students, to support the idea. Colleagues also joined our effort. The kids helped in many ways- brainstorming how to market the idea, designing social media posts, baking, and working at our booth after school for the two days of our school play. So far, in just two days, we have raised more than $300 for the Australia Zoo’s Wildlife Warriors program. We will continue this effort for a few more weeks. The kids feel a tremendous sense of satisfaction, which will hopefully motivate them in the future.

It thrills me to see the students feel positive and successful. It makes me happy to see them socializing and making new friends. They want to help others. They have shared some of their personal stories about issues that have affected their own loved ones and we are seeking ways to volunteer to support those issues. In fact, the students even said that they would participate in an ALS walk to support me, which touches my heart. Though, at this time, children who are actually caregivers are not members of our club, the members are kids who are caring and compassionate and are using those skills in positive ways. They are, in fact, a group of children who are givers of caring!

I think that as we navigate grief, particularly after spending a lot of time as a caregiver, we flounder with where we belong. I have met so many former caregivers who cannot get far enough away from that experience. I understand and don’t judge that or any other response. But, if we delve into anything, even if it is a return to work and not a change in direction, it is so easy to become shaken. And, changes in routine and structure often lead to floundering. I knew that I wanted caregiving and volunteer work to be a part of my life without really knowing what that meant. For me, there is always the fear that trying different ideas will lead to failure, and that the failure will mean that I was on a wrong or unachievable track. Participation as a volunteer has given me insight to what I can do, but also raised obstacles that made me question myself. I began to feel that spent a long time seeking to fulfill a desire to help caregivers, never feeling that I was grasping this vague idea I had of destiny. I was been pleased with my accomplishments, but I also questioned my goals, my strategies and what I thought was my fate.

Merida was right- I had to be brave and open to look within myself and see not only what I perceive as the failures, which hold me back, but also the positive things that, actually, have been leading me forward. I am discovering that it’s the concept of fulfilling my destiny that needs to shift. There is no finish line, no check-off list to that end. My destiny is within me and can be seen in the evolution of activities along an ever-changing trajectory that lets me know that I have touched lives in a meaningful way.  I have had to stop searching for this unattainable destiny and let myself be brave enough to look within and know that regardless of the activity and its success or failure, I feel most invigorated, rewarded and purposeful when I am working with and for caregiving and promoting caring.  For the first time, I am beginning to embrace the destiny that I’m already living, optimistic and open to bravely recognizing and tackling new opportunities.

Making a statement that “Fashion Cares About Australia”- raising money for the animals in Australia with baked goods and wristbands.

Fabulous poster made by a wonderful art teacher at school!

My contribution of cookies- grandma would be thrilled!

A New Year With Old Emotions

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January 2020 Calendar Page

Welcome 2020. I’d like to say that I started the new year fully and enthusiastically embracing Walt Disney’s notion that “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”  After all, a new year heralds the new opportunities and perspectives. However, the new year, for me, also signals the beginning of two difficult months with sad milestone dates. January is the month that my mom died. February marks the birth and death of my dad, Ben’s birthday, the death of my grandma and the first anniversary of the loss of my cat, Disney.

February 2020 Calendar Page

I find myself torn between celebration and grief, and it’s not fun I keep running into situations when I am caught between withdrawing into memories and propelling myself forward. Maybe even more significantly, I tend to beat myself up about how I deal with this and if my choices are “appropriate” and “healthy,” even by my own standards.  I suppose it stands to reason that a calendar was the thing that recently triggered my preoccupation with this time period. When Ben was ill, I created photo calendars for him that allowed him to always look at our favorite Walt Disney World memories. I have continued that tradition. Although sometimes I look at the photos and lament the time that was taken from him and from us, most of the time the photos bring back memories that make me smile. A few weeks ago, as I thought to order my 2020 calendar, I began to wonder if I should change the calendar to include some of my new memories. It set off stressful internal frenzy that had me wondering what I “should” do.

I looked through my many new memories from the past year and felt good about them. However, in much the same way that my new ornaments after my solo visit to London did not feel right on my Christmas tree because our tree was covered with our memories (click here to read about that), I felt that the calendar needed to remain dedicated to only my memories with Ben. This unleashed a lot of thinking and worrying about whether I was really dealing well with grief. I worried that by keeping a lot of things as they have been, that I am not completely coping with the acceptance that Ben is gone. There were so many questions. Am I holding myself back? If so, why? Would I be disrespectful to Ben’s memory to change the calendar? Am I afraid that these changes will make the void that much bigger? Am I afraid of visually documenting that there is a shift in my life that includes new memories because a tangible product like a calendar makes that shift a blaring reality? Should I stop the calendar tradition or completely change it?  I dwelled on this for a long time, procrastinating ordering the calendar. I was frustrated with myself, comforting myself with reminiscing about the old memories while reluctantly enjoying the newer memories.

July 2020 Calendar Page. Pictures from our last magical visit to Walt Disney World in July 2014.

Ultimately, I chose to keep the calendar the same. I was not ready to change it. When it arrived, until January 1, I kept it in its envelope without even looking at it. When I did open it on New Year’s Day, it was still a welcome comfort to look at each month’s collage and revisit those wonderful times. “Some people think a great deal too much. Of that I’m certain,” said Mary Poppins to Michael  in Mary Poppins Returns, as he is lamenting how he’s dealt with his children and the grief that they are all feeling, as well as how to solve his issue with his house. What I realized in my overthinking and worrying was that there are certain objects, like the calendar, that simply have a special place in my heart. However, I know in my heart that I am now in an emotional place where I can also happily, and even proudly acknowledge that I have indeed created new memories and I have rediscovered my sense of whimsy. I indulge my zest for life and I am grateful for wonderful friends, opportunities and occasions. A calendar does not have to represent these events. Right now, my calendar remains a special tribute to the life I had with Ben that gives me comfort and joy even when there is also sadness. I have not dismissed the idea of doing a different calendar next year, or sometime in the future. I decided that it’s fine if I continue my tradition, or even if I don’t. I have to let go of making constant assessments of what is right or wrong and defending myself to myself.

I know that these two months will be emotional. I also know that I am so fortunate to have been surrounded by much love in my life. It is my hope, wish and goal for myself that despite the sadness, I find new ways to balance past and present as I dare to discover a magical future.

I wish everyone a new year sprinkled with pixie dust.

October 2020 Calendar Page. Our favorite time to be at Walt Disney World- Halloween!

How “Up’s” Carl and Ellie Helped Me Cope With Grief During The Holidays

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It’s Christmas. Since I’m technically Jewish, it shouldn’t matter all that much, and this year Chanukah and Christmas overlap. Christmas is a big deal to me and always has been. Since I was a child I was always captivated by the colorful trees and fun decorations. I loved coming into the city with my mom to see the beautiful store window displays and the giant snowflake on Fifth Avenue. In a hectic city like New York, the holidays bring out a kinder, prettier, more whimsical side of people. I like that. For me, Christmas is the time of dreams and dreaming, of taking the time to reach out to people who are always in your hearts. Chanukah is a holiday and I do light the menorah and respect the traditions, but for me, it isn’t a season or a tone of the year in the same way as Christmas. I watch the Hallmark movies and yearn for what in my mind Christmas is all about and what it looks like. With Ben, I was able to have Christmas, even if it was simply wrapping gifts that he was bringing to his kids. Without people with whom I share my quirky sense of holiday traditions, I distract myself with a whimsically decorated apartment and the magical sights of the city, but I often feel the weight of a life that still frequently feels lonely and ungrounded.

Memories play an important part in all of our lives, for better and for worse. Now, in addition to my memories of many fun Christmases spent with Ben, I also reflect on how I have spent the holidays since Ben and my dad became ill and since they have left the world. My dad died in February 2014, and the holiday season that year was seen from the windows of the train and car service to and from the hospital and then the hospice. When Ben was ill and ultimately homebound, I decorated the apartment, which added some fantasy to an otherwise depressing environment cluttered with life that had been pushed to the side to accommodate medical supplies and equipment because ALS took over literally and figuratively. Those memories continue to fill my mind at this time of year, though I continue to decorate and call upon my holiday spirit. I put Ben’s favorite ornaments and decorations where he liked them. Since he was confined to his desk and chair all day, it was important to place things where he could see and enjoy them. The first ornaments I place are the photo ornaments from Walt Disney World. I love those ornaments because we spent so much time choosing the precise photo to represent each trip, even though the photos also reflect the physical changes in Ben that resulted from the ALS. Now, as I place the ornaments in those same locations, I talk aloud to him about it, often smiling. People might think I’m crazy, and maybe I am, but I know that he hears me.

Some of the ornaments that Ben especially liked to see were Sully, Buzz, Mulan, our photo ornaments.

Two years after Ben “left,” as he called it, I got my first new ornaments during my visit to London. I chose lovely ornaments from Harrods and Liberty, but they didn’t feel right on the tree because they weren’t ours and most of the ornaments were Disney ornaments that we chose together. At that time, the ornaments unnerved me because, although they represented a favorite place and a milestone in my life that I was once again able to travel without caregiving worries and responsibilities, I also felt that they conveyed that I had stopped grieving, which was not true. It continues to be a balancing act to deal with grief that never really goes away, and coexisting with those feelings but engaging with life, finding joy again without guilt and anger.

Last year, I purchased my first Disney ornament without Ben. It was a Mary Poppins ornament and I know that he would have liked it. Mary Poppins is very dear to my heart since childhood. I love the ornament, but I admit that it carries the burden of always being seen as the first Disney ornament of which Ben was not a part. Still, I have to remind myself that healing happened- until that point, I had not been able to consider new Disney ornaments. I realized that I was ready for my tree to evolve into a representation of all the beautiful memories that Ben and I created, and of the new ones that I am creating, with the hope and wishes for the magic that Christmas seems to signify for me.

The scene with the penguins was always a favorite. Now the ornament is next to our photo ornament and one of Ben’s heroes, Buzz Lightyear.

When I was in Walt Disney World this past October, I purchased an ornament from Mickey’s Not So Scary Halloween Party. I have had it hanging on a lamp and thought I would put it on the tree. I put it on the tree and removed it several times. Halloween and that party were our most special event and it felt almost disrespectful to put the ornament on the tree, as if it was a slap in the face to Ben that I could go to the party without him and then put a reminder on our tree. Finally, I decided to keep it on the tree because it accurately represented the conflict of struggling with his loss, carrying our wonderful memories with me and continuing to live and enjoy things we shared while acknowledging that they will never be quite the same.

This year, I spotted a very sweet ornament of Carl and Ellie from Up. It was a memory of early in their relationship, captured within a clear glass ball. That ornament touched my heart. Up is a movie with powerful messages about loss, grief and continuing to live. This ornament encapsulated for me the message that I have so many beautiful memories with Ben, and my tree is one way that I can visually display and recall those memories. My heart is fragile, like the glass that captures the memory of Ellie and Carl, but the memories are vivid and strong and beautiful, and they sustain me. The treasured memories surround each other and are, and will continue to be, joined by new memories. They are all precious parts of my story.

I think about Carl looking through Ellie’s scrapbook and reading her final message, “Thanks for the adventure. Now go and have a new one.” Here is the clip. I have put the ornament of Carl and Ellie on my tree as a reminder that although holidays are harder times without Ben, and there is definitely a void, adding new ornaments represents a way that I am coping with loss and finding new adventures while treasuring Ben and the memories we shared.

“Up” Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

It has been more than 4 years since Ben left this world. I say that because I want anyone struggling to know that the healing has not been happening quickly for me, but I have noticed and assessed it. We all grieve in different ways and in different timeframes. Sometimes, we see progress in very subtle ways. We have good and bad times. Sometimes we need the non-judgmental support of loved ones. Blogging and journaling have helped me to identify how I have coped, or not. I wish for everyone to have a holiday season in which they feel loved and supported and that allows them to embrace in some way good memories and the hope of new ones.  Please reach out in the comments or privately if you would like to share your strategies for coping with the holiday season.

The December page from my calendar is filled with our memories from Christmas at Walt Disney World in 2007.

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