ALS

Happy Stitch Day! Old and New Memories!

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ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient!  In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories. I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.

I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!

I love this little guy!

I hunted him down at the Animal Kingdom in 2007!

On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.

July 2014, Breakfast at the Polynesian Hotel.

Stitch gave Ben some extra love!

Making new memories at Walt Disney World 2019

Happy Stitch Day!

Being like Hercules- Going the Distance in Caregiving, Grief and Life

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Disney,Hercules,Grief,Caregiving

Hercules (1997)
Walt Disney Pictures

Disney’s Hercules opened on this date in 1997. It made me think of the Herculean tasks of caregiving, grief and recreating my life. After nearly six years without Ben, I still find myself thinking I am on my way. I can go the distance.  Somehow, I wonder if I will ever get where I’m going and if I will know where I belong if/when I get there.

I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, right up until he left this world. I remain in awe of his bravery and strength.

My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and it did give me immeasurable joy and satisfaction to hear from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions about a book I described but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, Mrs. Miniver. I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!

Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but every mile was worth my while. I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”

Managing grief has been another Herculean task. The ups and downs have been become less jarring, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize and to do things I love, like going to the theater and traveling (with the exception of COVID restrictions). I find peace and inspiration during my strolls through Central Park, where I do see signs of Ben from time to time. Ben remains very present in our apartment in photographs, things of his that give me comfort, and things of ours that bring good memories.

When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years. I have blogged about my memories, and living with my present, but the future remains daunting. I am doing more writing and exploring ideas with regard to caregiving kids, trying to see beyond teaching, which, although rewarding in many ways, is very stressful and a constant reminder of my gut feeling that I was never meant to be in a school building. Then, there is the search for love. My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that, as with Hercules, I know every mile will be worth my while. I would go most anywhere to find where I belong. I’ll keep you posted…

Celebrating Easter (and Routines) with Pooh’s Friend Rabbit

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Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s “The Many Adventures of Winnie the Pooh” (1977)

Easter always brings thoughts of the Disney bunnies. It is hard to believe that it has been a year since the COVID19 pandemic began. I still think about how the protocols and worries of the disease would have affected all of Ben’s and my routines and rituals with regard to caregiving. When it comes to rituals and bunnies, Winnie the Pooh’s buddy, Rabbit is the master. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He sees himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises like COVID19 might send him into an utter tailspin. I imagine that the fear of contamination and spreading of the coronavirus would have put Rabbit in lockdown mode before it was ever suggested or required. Rabbit would be the one to try to solve the problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. Although it still feels strange to state it, I am relieved that Ben and my dad do not have this worry. They are free of these constraints.

I think of the strong bonds of friendship that exist between the 100 Acre Woods friends. They understand and accept each other for their strengths and weaknesses. I imagine the 100 Acre Woods as a sort of sanctuary, free of the coronavirus threat. Even Christopher Robin would have been able to visit with his friends in this fictional, blissful world. Still, Rabbit would be the friend who worried and obsessed over the safety and health of everyone.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

What would Rabbit and I do to manage caregiving for Ben during this pandemic? Although chaos became my normal during my years of caregiving for my dad and Ben, Rabbit probably would have valued that establishing routines was our starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. If we were coping with ALS and the pandemic, Rabbit would likely be furious with my inability to keep things neat, but my priority was always to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. All of our routines would have to be scrapped as we focused on staying safe and keeping COVID19 away from Ben. This would have been difficult for Rabbit, but my coping strategy was always just to plow through these conditions and not consider the physical and emotional messiness (which does not mean that they did not take a toll on me). Early on, when even gloves were recommended and sometimes required, I imagine that we would both be so nervous about going outside to run errands, which would have changed our shopping routines and methods for getting supplies. Even now, we would not have allowed anyone inside and our interactions with others- even routine visits from health care workers such as speech and physical therapists would be nerve-wracking, if they happened at all. I imagine that we could not have any paid home healthcare workers traveling to and from our home, which would have made our caregiving tasks more strenuous. Rabbit and I might clash in the way we expressed ourselves, because I tried to see the humor in things, if for no other reason than to make Ben laugh, but humor was never Rabbit’s strong suit. In a small space, we might have to put our personalities aside and focus on the caregiving routines. Our bond would be forged of a shared devotion to Ben and desire to keep all of us safe and uninfected.

This holiday time, as it intersects with the social distancing standards, leads me to reflect on how illness affects connections among family and friends, where it’s not the 100 Acre Woods. I used to try to create a festive environment for Ben and me when Ben was homebound. At that time, there were no widely used computer programs for connecting online, and that’s a wonderful advancement and use of technology. I remember the sense of isolation that Ben and I often felt, not just at holidays. That isolation was not imposed. It happened as the ALS progressed and Ben’s speech and dexterity in typing diminished. As communication became less easy, some family and friends drifted away. Some people simply did not know what to say so they lost touch with us. Some people were more superficial in their friendships, not really wanting to hear about Ben’s life challenges. We had not created routines for keeping in touch on a regular basis. Maybe that should have been done. On the other hand, maybe that would have seemed too forced. I do think about the people I had thought of as close friends who eventually only offered empty comments on Facebook posts about how we were always in their thoughts or how they loved us, or that they were sorry for being bad friends (exactly how did they expect me to reply?). It may not have been social distancing in the COVID19 way, but the distances grew to the point where the friendships now barely, if at all, exist. I prefer to recognize that I am so fortunate that my closest friends were always there for both of us.

Although my sense of order and neatness would have infuriated Rabbit despite my ability to organize and maintain routines, I realize that rituals are extremely important to me. I see people participate in Passover seders and talk of watching Easter services online and having virtual celebrations with family and, although I choose not to celebrate these religious rituals, I feel a bit displaced. Still, I find great peace in my rituals and traditions when it comes to honoring Ben and the things that were unique to our relationship. For example, every day I listen to my Ben playlist of special songs, and I watch his favorite Disney and Pixar films on important dates like his birthday. I keep some items placed in our home the way he liked to see them. Also, without much family connection, my friends have become a chosen family. I have created rituals like baking cookies and making Valentine cards to show my love, and those are very important to me. These routines honor deep connections that transcend sharing physical space together. No matter where life takes me, though probably not as structured as Rabbit would like, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.

In whatever ways you celebrate and with the routines and rituals that give you peace and comfort, particularly at this stressful and challenging time, I wish you a safe, healthy and happy springtime.

Tinker Bell is grateful that Mommy knows how to use Photoshop!

 

National Hugging Day- When We All Need a Hug

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

Today is National Hugging Day. Seems there is a National Day for everything. I posted this photo on Facebook in honor of the occasion. It’s one of my very favorites. The story is interesting and, I think, worth sharing.

Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, he still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. After all, I was always the one who got super excited to see my friends and he generally laughed at me. In this photo, we had just entered the room and were greeted by Mickey. This was during the brief window of time that Mickey spoke (electronics, it wasn’t good). I was so shocked to hear him and couldn’t stop laughing.

What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful.  I needed that hug. I needed to believe that Mickey could help.

I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.

I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.

Hugs were so important to us. Since the characters don’t speak, hugs were a way that they communicated. When Goofy saw Ben get emotional, he didn’t know what to do so he kept hugging Ben and then trying to make him laugh, which he did. Hugs are powerful.

This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.

I always hugged Ben, particularly when there were no words for what he was feeling, but one of the things that upset him as his ALS progressed was that he could no longer give hugs. Ben gave great hugs! He was a big, burly guy and would just envelope me. I still remember him saying that he felt terrible that he could not hug me when I struggled with my Dad being ill and I learned that my dad died. He couldn’t hug me after I returned from the funeral.

I think that COVID 19 has shown us that we cannot be dismissive of gestures like hugs. I miss them. Tinker Bell gets lots of them, though she would tell you that she doesn’t love hugs at all.

I send everyone a big virtual hug of compassion on this National Hugging Day! Let’s hope that next year is different.

Happy Birthday, Walt Disney!

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

Walt Disney was born on this day, December 5, in 1901. As anyone who knows me or reads this blog is aware, he is an idol of mine, and such a huge inspiration, for his unbridled imagination, firm belief and proof that dreams can come true, and tremendous vision. I am simply in awe of his legacy to this world.

In my blog I shine the light on wonderful memories of Walt Disney World and how it makes me feel so connected to my mom and to Ben, and for that I will always be grateful.

When I first began this blog, in celebration of Walt’s birthday, I put together just a few of his quotes that are special to me. I turn to them when I need some inspiration, and I’d like to present them as an annual tribute to his brilliance on his birthday!

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

My mom loved Disney and was also a child at heart. I got that spirit from her. I think it’s always important to retain our sense of whimsy and wonder. It helps to stay optimistic and to be creative in problem solving.

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

“People who have worked with me say I am ‘innocence in action.’ They say I have the innocence and unself-consciousness of a child.”

People might say that I am sometimes a bit of a Pollyanna in my innocence, but it’s who I am. Yes, I do get disappointed sometimes, and I have learned to balance innocence with a need to protect myself, but I believe that this quality enables me to see possibilities and to fantasize in a healthy way.

waltandmary

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

Agreed. The perfect quote. It was a mindset Ben and I needed as he dealt with ALS. It’s a favorite quote that continues to lead me forward and allows me to stay a child at heart no matter the grown-up challenges I face.

Walt Disney, Walt Disney World

“The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.” 

I think that every caregiver would wholeheartedly agree with that.

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

“I hope we never lose sight of one thing-that it was all started by a mouse.”

Walt Disney, Walt Disney World

“Why be a governor or a senator when you can be king of Disneyland?”

Given the current state of the country, I’d opt for a position at Disneyland!

October 2019 next to Walt and Mickey. My first time back at WDW without Ben. I still found the magic and the laughter.

Happy Birthday, Walt, the consummate child at heart!  Thank you for all you’ve given to me and the legacy you’ve left to the world.

This was my beloved cat, Disney, celebrating Mr. Walt's birthday, along with Duffy (X 2) and Eeyore!

My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!

 

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