“Love is putting someone else’s needs before yours.”- Olaf, Frozen
How could I not think about Frozenon a day like today? It’s a wonderful film with romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.
On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm. As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben warm.
Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.
Our apartment is very drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes. We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.
“Some people are worth melting for.”- Olaf
Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver.
I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!
I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.
Photo collage blanket.
Photo collage towel.
Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.
Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.
A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.
It was definitely a challenge for both of us to be comfortable in the same space. I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.
Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. My heart is warmed to know that now he is free of the constraints of ALS.
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
Though I have to say goodbye
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
Though I have to travel far
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
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!
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.
With all good wishes,
Halloween 2010 Walt Disney World. Cinderella’s Wishing Well. Always wishing for a cure!
In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.
The Incredibles was released on this day in 2004 by Disney Pixar. Among Ben’s favorite super heroes, Mr. Incredible was second only to Buzz Lightyear (Mickey and Sully were in their own special category!). Thinking about that film made me think of an important quote by Mrs. Incredible/Helen Parr/Elastigirl: “Your identity is your most valuable possession. Protect it.”
Ben, like so many people with terminal and degenerative illnesses, had to fight not only the illness, but to protect his identity. ALS took away many of his abilities, and it became increasingly difficult to engage in and enjoy things that were so vital to who he was. Music was one of those things, and it played an important part in our relationship. Ben loved song lyrics and would often call and sing to me. Song lyrics helped him express his feelings. I gave him an electronic keyboard one Christmas, with a software program to teach himself the piano- something he always wanted to do- and sheet music to some significant songs (yes, It’s a Small World was one of the pieces!) He practiced the songs and called me to play and sing. It was sweet and romantic, and that was Ben. ALS took those things away from him, shaking how he identified himself. He never stopped listening to music though. I loved that he was able to enjoy live music during our last visit to Walt Disney World. Seeing him playing the air guitar and bobbing his head is a very joyful memory for me.
As he lost weight and dexterity, Ben was more self-conscious. He did not want a lot of people to see him. When he rode around the city in his scooter, he was often so happy that he forgot about how he looked. At Walt Disney World, we were discreet when he needed help to eat and the Disney cast members are compassionate and helpful about things like giving the time needed to transfer onto an attraction vehicle. Fortunately, most guests are so caught up in their own magic that they don’t dwell on others, and since it is the happiest place on earth, people frequently offered friendly assistance if they saw that I was helping him out from or into his wheelchair. But, how you look is part of your identity, and Ben took a hit there. He told me that he tried not to look in the mirror because he did not want to see how he was physically changing, but he studied the photos from our visits, and compared his physical changes from visit to visit.
As Ben lost his ability to get around, he saw less people. As he lost his ability to communicate- talking on the phone became difficult, though he could text- he relied on people to reach out to him. Sadly, that did not happen nearly often enough. The fact that people slowly distanced themselves from him also took a part of his identity, because he felt that he was no longer the valuable friend or family member that he thought he was, and that was very disappointing to him. It broke my heart.
Ben’s sense of himself also suffered as his speech became more impaired. If he repeatedly said something that I just could not understand, sometimes he would just give up. We spelled out words by my reciting the alphabet and his nodding when I reached the correct letter. However, the length and tediousness of that process frustrated him and he began to weigh what he really needed to say. Not being able to express himself took a toll on his identify and his self-perception. Since I was around him most, it was usually easier for me to interpret what he was saying. When strangers had difficulty understanding Ben, they sometimes assumed that he was mentally challenged and spoke to him like a child or addressed only me. Often, Ben laughed about it, but on many occasions he felt invisible and very misunderstood. So, I involved Ben in the discussions to show people that Ben was fully capable of understanding and had lots of opinions. He was vibrant in so many ways and he loved to laugh. Unfortunately, not being able to say what he wanted and be truly heard sometimes caused him to withdraw.
In the hospital, we had to do more spelling of words when his mouth was obscured by the Bipap mask and then, after the tracheostomy, and he hated that. There were many incidents when staff ignored Ben and asked me questions that he could answer. I immediately addressed those questions to him so that he could participate in the discussion. Yes, it took longer, and it was not easy, but he mattered and staff had to accept and embrace that. Most truly were wonderful.
As I write this post I feel very grateful to realize that Ben’s personality shone as he left this world, according to his expressed wishes, surrounded by people he loved and requested to be present, and with music that filled his heart.
Throughout our journey, I also had to work hard to protect my identity. I have written that I lost myself in caregiving but I also found myself through that experience. Juggling a full-time teaching job with full-time caregiving had me running in circles much of the time. My priority was to ensure quality care for my dad and for Ben. When I was not actually performing various tasks for them, I was stressed about what might happen when I was not present. At school, my phone was always at my side, just in case. During the periods that I did not have classes, I could often be found making phone calls or sending texts to check on them or to follow up with their medical teams. I could often be found in tears as well, because that was something I felt that I could or should not do in front of my dad or Ben.
I tried hard to take moments to indulge in little things that I loved and that felt like me. If I texted Ben after school and he was feeling okay, I would stop into Sephora and paint my nails in 10 different colors. It was silly and whimsical, but that is the side of me that I could not always feel and I missed it. I did find that I lost my enthusiasm for doing things that I’d always loved, like looking at all of the holiday store window displays and attending the holiday craft markets, because I felt distracted and I lacked the spirit. I took pleasure in buying Ben gadgets and crazy tshirts and pajama bottoms at Old Navy because they always made him smile, brought us back to the fun days and added some levity to his being homebound and not dressing up anymore. Doing these kinds of things for Ben added the dynamic to caregiving that let me protect my identity as a caring child at heart. There were too many things that were happening that were serious and daunting. There were also growing feelings of anger, resentment and profound sadness about what was happening to Ben, to our home, and to our relationship. This was on top of the simultaneous decline and then loss of my dad to cancer.
I see my identity as the person who genuinely loves to be the friend who is there to help. My friends are my family. But, with so much responsibility as a caregiver, not only was I less available, I found that I needed my friends to be there for me, as back-up for Ben and to allow me to vent. I know it was not easy for them to listen to my woes, have opinions of actions I could take, feel worried about my emotional and physical health, but know that I felt paralyzed financially and emotionally, incapable of doing anything or creating change that might be upsetting to Ben and even to me. I did not like to feel overwhelmed and helpless. But, I lost myself. My identity became Abby, the person who took care of her dad and Ben, Abby who was losing them, Abby who was falling apart. And, after I lost them, I really did not know who I was. I had no identity. I had to rediscover myself.
In grief, I did realize that caregiving is a vital part of my identity. My whimsy and passion and joyful nature shine more now, though I know that I am forever changed from my experiences. I am integrating my work as a caregiver- and it was work, albeit loving work from the heart- in my future endeavors. I am close to receiving my certification as a caregiving consultant, and volunteer with various support groups for people with ALS and their caregivers and loved ones. Some people have commented that it is too soon, or that I am dwelling in the past and not moving forward with my life, but I disagree. I know that it is an important part of who I am and I will protect it and, hopefully, I will be able to help others.
If you are the caregiver for a loved one and you are struggling with losing yourself, I would like to ask you to think about how you can take some quiet moments to remember who you were before the illness and the caregiving, who your caree was and is, and, if you are a couple, who you were before your relationship had to integrate a shift to patient and caregiver. That identity is your most valuable possession. Protect it by taking deep breaths when things get bad to remember, honor and cherish each other. This may seem trivial, but 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, phone was in hand for texts and issues that might arise, but each sip of tea allowed me to take a deep breath and just, as the Beatles said, Let It Be. Where you expecting Frozen’sLet it Go? Surprise!
Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!
2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!
My third Halloween without Ben. Though it is not traditionally a romantic holiday, for me it is, because it is the day that Ben proposed to me at Walt Disney World. I still have not been able to decorate with our Disney Halloween decorations. As I watched the little kids going to school in their costumes, I remembered how much Ben and I loved to see the cute children at Walt Disney World. I know that if he was still here, that I would have returned home to find him watching our Walt Disney World Halloween videos, bopping his head to the music and saying “Boo to You!” as they say in the parade. We would have looked at the photos and videos together and laughed at the memories while we fantasized about a new visit. Even when the ALS was progressing, Ben constantly went on the Walt Disney World web site to plan fantasy holidays. Frankly, I think it was healthy and helpful to him to stay hopeful and engaged in life. It’s hitting me hard that although I am so grateful to have the wonderful memories, I am saddened, and feeling a little lost, that I can no longer look forward to Halloween Disney adventures with Ben. That’s a tough part of grief. As I feel like the sharp pangs lessen a bit, the day to day realities, and thoughts of an unknown future, unexpectedly set me back.
One of my favorite memories, though bittersweet. After his ALS diagnosis, Ben was reluctant to meet Buzz, because he said Buzz was a super hero and he was weak. When he did decide to greet him, Buzz made such a fuss about Ben’s Buzz shirt (his Halloween costume) and Ben loved it. It gives me comfort and joy to remember Ben’s delight.
Every day my commuting routine is to listen to a special play list of special “Ben” songs. This morning, after those songs, I listened to the Walt Disney World “Hallowishes” parade music- Ben loved it even more than I did. The music did not comfort me. Although I love to picture Ben’s face watching that parade and saying “Boo to You!” I still grapple with the fact that we will never again enjoy those moments together. I wonder if I will ever want or be able to see it again. And maybe it’s okay if I never do. Maybe those were special moments that were just ours. On the other hand, maybe one day I will want to return to Mickey’s Not So Scary Halloween. That will be okay, too, because Ben will always be in my heart. He will always be present, just in a different way. Unfortunately, on a day like Halloween, it is not quite enough. I need some pixie dust or some bibbidi bobbidi boo!
This year, I baked Halloween cookies. Baking and decorating cookies is almost meditative for me.I call it my therapy. It also keeps my grandma close, since she taught me my great-grandma’s recipe, and it keeps Ben close, because he is the biggest part of any Halloween tradition and he loved when I baked cookies, teasing me about my elaborate processes. On the ghosty-ghosts (what we always called ghosts) I wrote “Boo to You!” because I know Ben would have loved that, so it gave him a sweet, special presence in the holiday that is uniquely ours. I need that.
Halloween cookies honor Ben and involve him in the holiday.
Now, I feel like a Halloween observer rather than a participant. Maybe it won’t always feel that way, but I do feel terribly lonely, and out of place. When it comes to Halloween, I’m only at home in the memories, so I will delve into those this evening as I look at our photos and videos.
As I think about the holiday this year, and reflect on my Halloweens with Ben, I realize that my post from last year still rings as true this year, and give me a positive perspective, so here are my words and memories of our most magical Halloween ever, at Walt Disney World- IN JULY!
Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!
Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!
There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.
Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!
Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?
Ben even had fun on the Magic Express wheelchair lift!
This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.
Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!
Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.
Ben was excited just to see the banner! He had no idea what awaited him inside!
Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!
Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!
The candelabra in our haunted hotel room!
Our hotel room was very fun!
I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.
At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.
Ben loving the Pirates & Pals Fireworks Cruise.
Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.
Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.
The Dapper Dans were very cool! Ben always loved them.
We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.
Buzz was one of Ben’s heroes, but he loved Woody and friends, too!
We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.
At the Walt Disney World Wishing Well at Cinderella’s Castle