‘Tis the Season to be Emotional

Disney,ALS,grief,Christmas,Chanukah

Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

Thanksgiving has come and gone. My second Thanksgiving spent without Ben. My second holiday season now begun without Ben. I’m sad to say that I’m finding this year to be getting off to a very rocky start. I wasn’t expecting that. I guess I also wasn’t expecting to feel worse the day after the first anniversary of Ben’s “leaving,” as he would say (click here to read that post), so I guess I need to abandon my expectations.  Grief. If only it came with an instruction manual. I understand some of it, and can predict and gear up for bad days like anniversaries of various events.  But, when I’m unprepared, the sadness really shakes me.

I am grateful for so much, including having wonderful friends who include me with their families. But, I think that last year I went through motions and was either sad, numb, distracted, or any combination of those feelings. This year, I took the time to think about what I would like to do over the long holiday weekend, and I chose to decorate my apartment for the holidays and to get together with friends.

Thanksgiving is a family holiday, and I’ve lost my parents, closest relatives, and Ben. My aunt Eleanor has Alzheimer’s disease, and although she seems to recognize me as familiar and we relate very much as we always did, I’ve lost her, too. My friends are my family, and I am so fortunate for that, but it’s also been a harsh reality and an adjustment. I think it’s also part of the process of grief, and of life.

Last year, I set up the sparkly pink and silver tree that Ben got me a few years ago, when a real tree and the lights became too much to deal with, given his caregiving needs and our limited space. Ben always left decorating the tree to me, because he said he’d never seen anyone get so excited about decorating a tree. But, he would occasionally chime in on where he thought ornaments should be placed. I missed him while I was decorating, but I missed him no matter what I was doing. I didn’t get any new ornaments and kept everything as it had always been. I even put his favorite ornaments in the same places on the tree, where he was able to see them from his desk. I remember that the tree did not bring me a lot of joy, but it didn’t make me especially sad either. I was struggling with so many emotions at that time that the holidays were just one more emotional episode to add to my list.

grief,ALS,Disney,Christmas

Ben loved Sully (top right). The high-four balloon had symbolism (see my birthday post). The French girl from It’s a Small World was also a favorite- ooo la la!

This year, although I miss having a real tree, I felt like I wanted to keep the pink one again because it was a gift from Ben. I expected to set it up on Thanksgiving with our ornaments, most of which are from Walt Disney World. Last winter and spring, I repainted, recarpeted and got some new furniture and I was actually looking forward to seeing my holiday decorations in my “new” setting. It didn’t turn out to be the positive experience I thought it would be. Instead, I’m feeling down and defeated because decorating has been a laborious and sad process. The bride and groom Mickey and Minnie ornaments that we got when we became engaged just reminded me of a happily ever after that didn’t happen as planned. On the other hand, I still love to look at the photo ornaments that we had made after each trip. I can see the way he changed over the 6 years that his ALS progressed, and yet I also feel so grateful that we could make those trips after his diagnosis and that we are so happy in each photo. And, I remember how we pored through photos to pick the ones that would become ornaments.

ALS, grief, Christmas,Disney

It’s a Small World (my favorite song!) at the top and to the left of our photo ornament is the Hawaiian girl from that attraction- we loved her.

Again, I placed his favorite ornaments on the tree where he would have been able to see them from his desk. It’s where they belong.  I did get some new ornaments in London. I thought they would be nice, new additions to reflect a favorite place and new things in my life. But, when I placed them on the tree, I immediately felt that they didn’t belong. They interfere with my memory of what is still, in my mind, our tree.  My tree is a wonderful visual representation of my life- the wonderful memories of times with Ben meshed with the addition of new memories I’ve created as I’ve taken my first baby steps on a new path. By including my visit to London, which was a big step for me (click here for that post) I’ve also shown that I’ve made progress in my grief and my life. However, I did not anticipate that I would also see a jarring clash of past and present. I spent so much time trying to keep things the same- even continuing to arrange things for Ben the way I used to- but things are not the same. The beautiful ornaments that I found in London change what I seem to want to keep frozen in time, as if Ben is still here. I did not realize that until I saw all the ornaments hanging on the tree.

ALS,grief,Disney,Christmas

Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.

This year, I feel sharply the pain and the loss, while I’ve also accepted that I need to shape a life. It’s a difficult balance, and maybe that’s why this year is harder. I have heard that sometimes the second year is harder but I don’t think there is a steadfast rule. That’s the problem with grief. There is not a one size fits all way to experience it. Last year everything was a mess. This year, just as I felt I’ve made some progress in adjusting to life, I was caught off-guard with tears and loneliness when I was doing something I looked forward to doing.

ALS, grief, Christmas, Disney

Ben’s little Disney fiber optic tree. It was always on the corner of his desk. I got a new table, but I still keep the tree in the same place.

I wrote this blog post because I thought that sharing my own experience might help other people in grief and struggling with not knowing how to handle the holidays or where they belong. Maybe you can relate or maybe this is not your experience. I do think that part of grief is accepting that there are going to be good and bad days. I am grateful that I do have more good days now. My very whimsical tree still shouts a love of Ben and our memories and love of Disney. I have faith that as the season progresses and I continue to adjust to my tree, and, beyond the holidays, my life, that I will find a balance that respects my memories and traditions but also welcomes new ones.

Feel free to share your experiences or ideas or advice in the comments section below.

Special Film, Special Date, Special Memory

 

Beauty and the Beast Walt Disney Pictures

Beauty and the Beast
Walt Disney Pictures

Today is the 25th anniversary of the release of Walt Disney Pictures’ Beauty and the Beast, one of my all-time favorite films. I am reminded of the 2012 release of the 3D version of the film. Ben and I had made a tradition of attending opening days of the Disney movies. As his ALS progressed and getting out and about was more difficult, we could not maintain the tradition, but we did continue to see the films. Ben knew that I was eagerly awaiting Beauty and the Beast 3D because I couldn’t even imagine how they could make it more beautiful (they did.) I did not mention going on opening day and I thought it would be too exhausting and complicated to get him dressed and down the stairs after a day of work. That release date was also the anniversary of the passing of my mom, and I was not in the best frame of mind. No problem. We’d see it at some point. When I got home, Ben was waiting for me, all ready to go. It touched my heart more than I can express in writing. His dexterity and motor skills were already compromised, and it took him all day to get dressed, but he wanted to have our date night. And, because my mom and I shared a love of Disney, he thought that going to a Disney film on that day would be a lovely way to honor her. That was Ben- always romantic.  We had a beautiful evening.  And, now I have another special memory.

Superheroes of Caregiving and Grief: Gratitude and Perspective

Ben and I at Walt Disney World, July 2014

Ben and I at Walt Disney World, July 2014

A little more than a year has passed since Ben left this world, and it’s almost 3 years since I lost my dad. Grief is filled with ebbs and flows of emotion, and I do, at times, unapologetically allow myself to give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses. The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, I did have things for which to be thankful. I still do.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,” said Walt Disney. In theory, I agree with Walt (OK, so no surprise there!) But, when I was watching my loved ones deal with ALS and cancer, and I was struggling with caregiving, and then grief, although I was appreciative of people and things, I can’t say that the state of gratitude was where I lived, or even where I wanted to be. It took too much effort. Ben lived in a state of denial about the progression of the disease, and I lived in a state of anxiety, more relieved than grateful for any day without crises. To me, saying I was in a state of gratitude would have implied a sense of peace and contentedness that I did not have. As time has passed, however, I’ve learned that “being in a state of gratitude” did not mean to naively ignore or diminish the impact of the bad experiences, or to try to “push Sadness into a corner,” like Joy from “Inside Out” (click here for that post.) To be in a state of gratitude gives me the very important power of perspective. There were times that I could not get beyond the chaos and sadness, and that was and is fine and genuine, but I can also shift my perspective to focus on the many aspects of these experiences that were filled with love, compassion and caring, and those do compel gratitude and invite more of these thoughts. That’s also genuine, and it’s a good and humbling feeling.

My dad and I

My dad and I

I feel very fortunate to be able to share some things I’ve discovered in my state, or perspective, of gratitude.

At the top of my gratitude list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving was the most heartbreaking and challenging thing I’ve ever done, but it was also the most important, valuable, loving and rewarding thing I have ever done. I could not save my dad or Ben, and I wish we did not have to take these journeys, but I am so thankful that they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. It didn’t always feel like it, but it was a gift to be able to feel and express that depth of love in such tragic circumstances. And, I treasure the knowledge that they loved me.

I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. In Ben’s situation, when family didn’t step in -and there were definitely disappointments and dramas- we  could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.

I am grateful that in June I was offered an opportunity to present at the annual memorial service of Mount Sinai Medical Center’s Visiting Doctors Program a pubic tribute to Ben and to the people from that program and the hospital who were so fantastic to him, and to me. ALS is a rare disease, and although it is difficult for me to speak publicly, I feel it is important to take any occasion to share Ben’s experience and, hopefully, contribute in some way to an overall understanding of what it is to live with ALS and why there must be tireless efforts to find a cure. If you’d like to read my tribute, click here.

I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and it touches my heart to know that readers find comfort in my words. I’ve gotten back into my craft work with miniatures and into Pets en Voyage, the pet souvenir business Ben and my dad helped me develop and launch. I’ve also created displays of photos and memorabilia around my home, and looking at these things always makes me smile, if sometimes through tears.

I am grateful to Walt Disney for giving us all things Disney. I am simply in awe of his imagination and vision. I am grateful to Disney for amusement, consolation, comfort, life lessons, belief that dreams come true, perspective and incredible memories. And, because I am so grateful, I even named my cat Disney. I am thankful for her every single day for the love, cuddles and laughs that she gives me and for the love she showed to Ben, especially when she visited him in the hospice.

photo-7

I am grateful to be resourceful, and to have sought out support groups and resources that have guided, encouraged and motivated me, and let me know that I am not alone in my feelings.

Walt Disney also said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

I’m grateful that for the first time in a long time, I am cautiously optimistic about starting down a new path to see where it leads as I reshape my life, though there are and there will be setbacks. My memories, and desire to respect Ben and my dad and make them proud, will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. This would also be a good place to add that I am grateful to have my mom’s child-like wonder and spirit, with an inner child that cannot be contained. It allows me to continue to wish upon stars for dreams to come true. I just keep reminding myself of what I learned from Christopher Robin and Winnie-the-Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I hope that if you are reading this, and you’re struggling with gratitude and the holidays, that you will be true to your feelings but also consider a perspective that allows you to see and be grateful for love, compassion and good memories to carry you forward. And, take a bit of time (I do realize that time to yourself can be a luxury) to think, write, draw or in some other way acknowledge yourself.

Happy Thanksgiving.

With all good wishes,

Abby

A Happy Birthday Card To Mickey Mouse!

Mickey and Us
Happy Birthday, Mickey Mouse!

Since my blog is inspired by a love of all things Disney, I want to acknowledge the birthday of my favorite Mouse! You may turn 88 today, but you are the eternal child who brings out the inner child in all of us. I know it’s Minnie’s birthday, too, and I also wish her a Happy Birthday!

 
You and I go back a long time. My mom loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! But, I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse in her arms. My mom was the consummate child at heart, and I get that from her!

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near our office (we met at work). We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.

 
We went to Walt Disney World several times together. Our first time was for my birthday, and we discovered the relatively new Mickey’s Not So Scary Halloween Party. Little did we know that we would be completely captivated by this event. We planned almost all of our visits to Walt Disney World around Halloween (and my birthday!)

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Our first visit to Walt Disney World together! 2001

After Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Epcot, Walt Disney World, Halloween 2012

I admit that I was the one who had to greet all of my Disney friends. Ben sometimes joined me for photos, and sometimes he just took pictures and laughed at me. But, with you it was different. He always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional. While some people just see actors, I believe that to visit Walt Disney World is to embrace the fantasy and the whimsy and, besides, I believe in you. With an ALS diagnosis, you want to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he handed me a “diamond” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.

 
For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Ben also had an incredible attitude, and he was determined to engage in life.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Those memories comfort me now.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

No caption needed for the joy in this photo!

Happy Birthday, Mickey. May you continue to be the spark of hope and happiness  for children of all ages.

I will always love and thank you,

Abby

11 Awesome Insights From Dory and Friends About Caregiving (and Life)

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Though she may have “short term remembery loss,” Dory is one wise little Blue Tang! She put into perspective for me a lot about caregiving and life. It’s not all about “just keep swimming!” but you can read about how that quote inspired me by clicking here.

  1. Some of the best help and support you receive will come from unexpected sources.

Finding Dory,Disney,ALS,Caregiving,Caregiver,GriefDory felt alone because she thought she would never find her mom and dad and have a family. She finally realized that Nemo and Marlin were also her family.  My friends are my family, too and they provided help and support for which I will always be grateful. So did some of the professionals who took care of Ben, and I will forever love and be grateful to them as well. Becky and Gerald may have seemed like they were not up to the task of helping Dory and her friends, but they also came through in big ways. Don’t automatically judge or dismiss people, especially if they genuinely want to help, because they may be the very people who will listen, assist and offer really good ideas and information. Teamwork happens in many ways. All kinds of people stepped in surprised us in wonderful ways throughout Ben’s illness, and they continue to do so. They have compensated for the people who disappointed us, because, of course, there’s that, too.  Knowing that Ben was in the hearts of many always touched me, and it still does. Never underestimate the power of compassion and always be open to delightful surprises.

2. Be careful of the undertow.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Caregiving is overwhelming for so many reasons. Aside from the demands of the job, there is an emotional toll of helping someone you love deal with any disability or illness and watching them struggle. The “undertow” can take a caregiver and/or a caree to a place of extreme sadness, depression, loneliness and helplessness.  It’s important to stay connected to the outside world, through your own network of friends and relatives, outside agencies, and social media support groups. Make lists of things and/or people that provide comfort, cheer, or assistance when the undertow starts pulling you down.

3. “I’m OK with crazy”- Hank

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangled emotions are turning us inside out (what can I say? Disney references work for me!) You have to be ok with crazy when many things are happening at the same time that you have many conflicting emotions. And, you have to be ok with crazy when attempting to handle crises. I remember thinking that crazy was my new normal. Perspective helps! So does humor.

4. Not everything is easy to do, but there is always another way.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Creativity, resourcefulness and a good sense of humor can help to determine new approaches and perspectives on how to deal with issues. Don’t be afraid to ask for help.

5. “News flash! Nobody’s fine!” – Hank

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

In the most planned and organized day, there will be crises. They can be physical issues but they can also be emotional fallout. Caregivers and carees are not always at their best, though we would like to be. It seems to me that our default answer to “how is everything? “ is “fine” and I’ve found that most people kind of want that answer because they don’t know how to handle anything else.  It’s ok to admit that things aren’t fine. That admission should not invite any judgment. And, it doesn’t mean that things won’t be fine again, even in a matter of moments. Remember, Dory taught us that we’re ok with crazy!

6. An octopus may have 3 hearts, but it doesn’t mean it’s nice.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Yes, it’s a fun fact, but it also lends perspective to our expectations of people around us. Ben and I were very fortunate to have lovely people around us, but we also learned that not everybody has a big heart, and having three probably would not have helped them either. Also, professionals are there to help, but, like all humans, there are more and less helpful and invested people. We were surprised in good and not so good ways.

7. Let someone know you love, care about and value them.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Marlin often gotten frustrated with Dory, but he realized that in her innocence, she was fearless and she got him to do “crazy things” like jump jellyfish and outsmart sharks to help find Nemo. His approach to problem solving became asking himself what Dory would do.

In the film, Marlin apologizes to Dory for not having told her how much she did for him. That’s not a regret anyone wants to have. Take any opportunity to share kind and loving moments and memories.  The frustrations and resentments will ebb and flow, but the appreciation and love we have for each other should always flow.

8. “What is so great about plans?”- Dory

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

We certainly need to have plans in place, and even back-up plans, but when you’re dealing with illnesses and caregivers, you’re also dealing with human beings and unpredictable factors.  For example, I prepared to go to work every day, but there were days that I had to stay home at the last minute for a variety of reasons. I remember that on some of those days, my feeling Ben’s very loving appreciation and his feeling my unwavering devotion, made for beautiful days. You know you have to be prepared for anything, but expect the unexpected in good ways, too.

9. You can do whatever you put your mind to.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Dory may have suffered from “short-term remembery loss,” but she dove in and figured out what she needed to do to find her parents. She enlisted her friends to help her and remained determined. She didn’t give much thought to consequences, which did create some problems for her along the way. But, she forged ahead. Caregiving can be very overwhelming at times, in terms of the actual tasks and in thinking about the future. But, I always come back to Christopher Robin’s wise advice to Winnie-the-Pooh: you are braver than you believe, stronger than you seem, and smarter than you think.

10. Never underestimate the power of a cuddle party!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

A little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! They comfort me now in grief, too.

11. Sigourney Weaver rocks! You need someone like her on your side!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Whether standing up to aliens or lending her voice to stand up for our marine life, she is a star! Sometimes I felt like that person for Ben, and at other times I felt completely inept. But I’m going to always keep reaching to be a rock star (well, maybe more of a Broadway show tunes or Disney star!)

All photos: Finding Dory, Pixar Animation Studios and Walt Disney Pictures, 2016