ALS

Walt Disney’s Legacy- More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2016 marks 51 years since he left this earth. I’m sure it’s no surprise that I love to read about him, and to get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. He’s been a part of my life for as long as I remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. She was just a little girl when he was “born.” Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. I believe that 50 years from now, and, as Buzz Lightyear would say, “to infinity and beyond,” Walt’s words of wisdom will still stand strong, as will his legacy.

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled, guided, intrigued, and entertained me.  Now, they are helping me to look to the future with optimism, and I think that’s especially significant as we approach a new year.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS,Caregiving,Grief,Walt Disney World, Disney

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. My husband, Ben, always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiving,Grief,Walt Disney World, Disney

Grief is tricky. I have taken steps forward, but I cannot predict something will trigger a setback. The reactions people have to grief also vary. Some people expect you to “get over” loss within a designated time period. Some people want you to act like everything is fine, because they are the ones who really cannot handle the emotions. There are even people who think it’s unhealthy to talk about the loved one you’ve lost. I have learned to dismiss those opinions and have gained a bit more confidence in my myself and my ability to embrace the broad spectrum of my emotions. There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiving,Grief,Walt Disney World, Disney

The Wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

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

ALS, Caregiving, Grief, Walt Disney World, Disney

This quote is my current inspiration for the future. I believe that my curiosity, desire to learn, love and compassion will carry me forward to find new and more love, laughter, peace and joy. I cannot deny that right now I feel a bit lost and lonely. At the same time, I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

ALS,Caregiving,Grief,Walt Disney World, Disney

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This is a comfort to me. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiving,Grief,Walt Disney World, Disney

That sounds like a good plan! Thank you, Walt!

How to Stock Your Caregiving Closet

I was invited to contribute the following article to Parentgiving.com. It contains ideas for items that caregivers should consider having handy, based on my own experiences caring for Ben (ALS) and my dad (prostate cancer). I hope that caregivers find it useful.  

Given the demands of caregiving and the possibility of urgent situations that make running errands impossible, family caregivers can benefit from keeping a cadre of supplies on hand for themselves and their carees. There are a lot of potential home care situations to be ready for, and you never want to be caught off guard. Having the right caregiving supplies will keep you prepared and can save a sudden panic if you don’t have an urgent item and can’t make it to the store right away.

To help others with what to store in their caregiving supply closet, I have created a list of items I used when I cared for my dad, who had cancer, and for my husband, who had ALS. I’ve also included item suggestions from family caregivers who cared for individuals with a wide variety of needs. Peruse this list and see what relates to your experience – and what may currently be missing from your shelves. Depending on the item and frequency of use, you may want to have at least one- or two-month supplies on hand.

Keep the following documents in a clearly marked envelope in your supply closet:

  • A written or typed list of meds, including dosages, times to administer and special instructions.
  • Important contact names and numbers (including physicians and the pharmacy) as well as important documents such as the health care proxy, living will or special directives.

This information is essential on multiple levels. If gives you something to look at if you ever have a memory lapse, and it will also be there if someone else suddenly has to step in and provide care.
(more…)

On Disney’s “Coco” and The Power of Our Memories


The lyrics from the song “Remember Me” were very emotional.

Remember Me
Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade

Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart

Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me

Today I went to see the new Disney movie, Coco, which opened on Wednesday for Thanksgiving weekend. It highlights Day of the Dead, which is a favorite unit of my Spanish language classes, who are often surprised to learn that it is not just “Mexican Halloween.” We make calaveras, the decorative skulls, and we talk about the concept of how the spirits of loved ones who have passed away are believed to come back to visit their families on that holiday. Their spirits live on as long as they are remembered by the living who loved them. I always tell my students that although I don’t really celebrate Day of the Dead, I am moved by the idea that the spirits of my parents and Ben would come back to me every year, but that I often feel that they are watching over me.

July 2014.
Trying on sombreros at the Mexican pavilion never got old with us!

2006, before Ben’s ALS diagnosis

I have always looked forward to the new Disney and Pixar films. I was definitely intrigued by this movie because of the theme. When Ben and I went to Walt Disney World, I did love the Mexico pavilion at Epcot, where the artisans could be seen making beautiful Day of the Dead crafts and spirit animals. As I took my seat in the theater, I thought about how one of Ben’s and my favorite traditions was going to the Thanksgiving Disney movie release on opening day, or opening weekend. As his ALS progressed, that became more difficult, until it became impossible. Today, I missed him terribly and felt very lonely and alone. Some things- particularly Disney things- will never be the same without Ben.

Coco was absolutely beautiful, but very emotional, given my own losses. For one thing, the character Coco is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way.  But, it was also poignant, since it echoes my own experience with my great-aunt, with whom I was so close, but who now seems to know that I am familiar, but does not know who I am. Since she does smile and get animated when I visit her, I comfort myself with the belief that memories of me are somewhere in her mind. I cannot have the same relationship with her, but I continue to visit her and take comfort in making her laugh and smile without dwelling on that she does not know my name, or that I am her niece, the daughter of her sister, whom she also does not remember.

Also integral to the plot is the profound love of and connection to music that Miguel feels to his core. Ben would have strongly related to that. Playing music and recalling lyrics that resonated with him were key to who Ben was. I took comfort in knowing that Ben would have enjoyed Coco‘s emphasis on the vitality of music.

Since my birthday and Halloween, I’ve been struggling with missing Ben so much. This was our favorite time of year and there are constant reminders of him that make me feel very alone.  Although it unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart. I was fortunate to be able to tell my dad, my grandma and Ben that I would never forget or stop loving them. Remembering them keeps them close to me always and, very significantly, it keeps their spirits alive.  Sometimes that’s not enough, like today, when I wanted to be sitting next to Ben and holding his hand, knowing that as soon as he would have seen Coco he would have handed me a tissue and I would have started laughing through my tears because he knew exactly what tugged at my heartstrings.

In typical Disney fashion, it is a movie that can be enjoyed by children of all ages. It is vibrant and colorful and fun, yet it also carries important messages for all of us about life, aging, love and loss. Ben would have loved, as I did, that there was even some Spanish language in it!

Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!

Gratitude- It’s A Super Power!

 

2011- The first time we went to Fantasmic!

I spoke to my students yesterday about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. Once you begin to think of those little things, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself. Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

Grief is filled with ebbs and flows of emotion, and at times, I 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 (A little more than two years have passed since Ben left this world, and it’s almost four years since I lost my dad.) 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, Ben and I did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. I have been feeling down and alone lately, and reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,”
said Walt Disney. It certainly feels good to conjure gratitude, though when you’re facing a terminal illness like ALS or cancer, it seems almost disingenuous to think that you can put yourself into a state of gratitude and that you can attract things to be grateful for.  Ben lived in a state of denial about the progression of the disease, and I lived in a state of bracing myself for what might come our way, more relieved than grateful for any day without crises. As time has passed, I’ve learned that “being in a state of gratitude” is not to naively play the Glad Game and turn situations around like Pollyana did. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. Once I’m thinking about things to be grateful for, I realize that I have quite a nice list. That’s a good and humbling feeling.

At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but 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. 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. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I  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 to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words.

And, since today is the anniversary of the release of Toy Story, I must note that Buzz Lightyear was Ben’s very favorite Disney super hero. I am so grateful that even when Ben was feeling weak and somewhat defeated by ALS, Buzz brought him so much joy and laughter. This video clip is one of my very favorite memories. I am so grateful to have these memories.

 

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 to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.

As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and I am pursuing my certificate as a caregiving consultant. I am grateful to have met some wonderful people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases.

I am grateful to be teaching in a new and wonderful public high school. Not only is it a healthier environment, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. It is also an opportunity to redefine myself beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. Not exactly who I am now, but as Walt said, I’m opening new doors and finding my way down new paths.

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. I am cautiously optimistic about starting down a new path to see where it leads. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief.

Happy Thanksgiving.

With all good wishes,

Abby

Halloween 2010
Walt Disney World. Cinderella’s Wishing Well. Always wishing for a cure!

 

 

 

 

 

Happy Birthday, 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

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2012- A subtle but significant change: Ben stayed in the scooter when he met Mickey Mouse.

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. Since he has been gone, you have continued to entertain, console and inspire me. My memories of our times with you keep me smiling, even though there are also tears.

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

No caption needed for the joy in this photo!

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

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