Disney

What Piglet and His Best Friend Pooh Knew About The Care In Caregiving

Halloween 2012

Disney’s Christopher Robin made a big impression on me, and I can’t stop thinking about it. I think I’ll have to see it again! (and probably again after that, and many times once the DVD becomes available!)

I’ve been reminiscing about Pooh and Piglet played a big part in how Ben won my heart. When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me over to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and his great hugs could calm me down and completely surround me with love. He was a big kid at heart who indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

Disney Store,Winnie the Pooh,Piglet

Piglet and his Best Friend Pooh!
A very special figurine with very sweet memories.

When I saw Piglet and Pooh together in the film, I couldn’t help but picture Ben smiling. They have a such a beautiful, sweet friendship. Here’s one little conversation between them that touched my heart.

“I don’t feel very much like Pooh today,” said Pooh.

“There there,” said Piglet. “I’ll bring you tea and honey until you do.”

That’s caregiving. It’s that simple and that complicated. Ben didn’t feel like himself as ALS took away his abilities. There were times that he was understandably frustrated and sad. All I could do was be there, trying to bring him comfort.

Sometimes it’s a matter of being present, sometimes it’s being a good listener, sometimes it’s ensuring that routines- including medications- are followed. Mostly, it’s about caring to figure out exactly what will soothe the caree at the moment. For Pooh, honey was always a good solution. It’s not always that easy. But communicating the desire to be there, to help and support, can only strengthen a bond. Although we could lose patience with each other, and sometimes we both needed our moments to feel down, Ben knew that I would always at least try to find the thing that would be his tea and honey.  And, I knew that he would find a way to show me he loved me.

Halloween 2011. Piglet was bigger than we’d imagined!

In another conversation:

“What day is it?” asked Pooh

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

It’s hard to imagine that any day with ALS can be a favorite day. There were definitely the big time highlights, like when Ben woke up on January 1, 2015, and he said that he had such a fun New Year’s Eve. I had ordered matching Mickey Mouse and Friends pajamas for us and even for my cat, Disney. Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. It felt almost magical to laugh and enjoy the evening. That silly celebration was a most favorite day and is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.

Any days spent at Walt Disney World were favorite days when Ben felt free as he rode around in his scooter or electric wheelchair. The Disney magic allowed him to enjoy most of the attractions and to temporarily abandon his worries.

Once he was homebound, Ben’s days did not vary much. But, every day that he was okay and things went smoothly, when we handled or averted a crisis, solved a problem, and enjoyed each other’s company, was a favorite day. We recognized, acknowledged and treasured those.

Winnie the Pooh commented, “There’s always time for a smackeral of wonder.” I think that’s true. And, it’s so important. Ben never lost his curiosity, sense of humor and ability to be inspired, particularly by music. When we were able to go to Walt Disney World, his inner child shone, and he marveled at everything he saw and all the music he heard. When he was home, he watched movies and documentaries and listened to music, always questioning, always learning, always with a sense of wonder and delight. I think that helped him to navigate ALS. Always finding time for a “smackeral of wonder” is good advice for all of us.

I believe that Ben would be especially happy that these lessons came from Piglet and his best friend, Pooh.

 

Finding Nemo and Dory Also Means Finding Good Advice on Caregiving and Life

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

I guess aquatic life has been on my mind since my little jaunt to the Georgia Aquarium and found Nemo and Dory and had so much fun with the sea otters, dolphin and penguins. Nemo, Dory and their friends helped me put into perspective 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. I have heard people with ALS and their caregivers says that it irritates them to be asked that question because people really don’t want an honest answer and they don’t want details. And, they don’t want to feel obligated to do anything, even if there is no expectation of that. 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, Hank 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

I am kind of obsessed with river and sea otters, so those litter critters stole my heart in the film. But, they are a strong reminder that a little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that often came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! I have added a couple of cute little otters to my collection. They all 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

Walt Disney World’s Epcot, 2007, pre-ALS

 

How Disney Pixar’s “Up” Helps Me With Grief

Up Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

Disney Pixar’s film, Up, is so beautiful, so poignant, and so adult in its messages on life, love, loss, grief and the memories that sustain us. Although I suspect that most readers of my blog are fans of Disney, even if you do not share my passion or are not a lover of animation, I highly recommend that you watch this film. I also recommend that you have tissues nearby when you do.

I relate so strongly to this clip, in which Carl looks at his deceased wife Ellie’s scrapbook. I, too, am surrounded by the blanket, towel, calendars and framed photos, as well as nostalgic items that keep Ben with me.  As you see at the end of the clip, Ellie wrote “Thanks for the adventure. Now go and have a new one.” Although I have begun the process, I have had a hard time turning the page of my scrapbook and filling the blank pages with adventures that do not contain Ben.

Just as Carl does throughout the film, I look at and talk to Ben’s chair, I ask him questions, I do things that he would have done and buy things that he would have liked. That has kept him close to me. Carrying Ben in my heart is positive and comforting amidst the sadness and unsettling feeling of experiencing life without him. Lately, however, I find that I am feeling a lot of anger. I am angry at the things that he is missing, the life he was cheated of, and the time that was taken from us. As I have written in prior posts, summer is always emotional for me because Ben spent his last summer in the hospital, ultimately choosing to separate from the ventilator at the end of August, 2015. Anger is a new phase in my grief. It’s very upsetting and I’m trying to fight it with gratitude for the time that we did have.

Photo collage blanket.

Last summer, I struggled to push myself to make some plans. It was uncomfortable, but I specifically made plans to be with good friends, which was something I did miss when I was a caregiver. It was a good summer and, the truth is, I spent a lot of it talking about Ben.

As this summer approached, I was proactive in planning. I did not feel the same dread of summer because I have come to accept the ebbs and flows of grief and I know that my thoughts will simply drift to the memories of that last summer in the hospital. I knew as I began to make summer arrangements that I would miss Ben and that things would not be the same, but I have been integrating those feelings into my daily life. I have long been wanting to meet and interact with otters and penguins, and I discovered that the Georgia Aquarium had encounter programs with both of these cuties, and even with dolphins, another love. So, I decided to follow my whimsy and make one of my dreams come true. I booked a two-day trip to Atlanta to meet the animals I plaster all over my Facebook page. I went by myself, which, I think, was a statement of independence to myself that I needed to make. This excursion might not seem like much of an adventure, but for me, it was pretty monumental.

This was not my first excursion without Ben.  I went to London in 2016, but London was a place that was special to me way before I knew Ben, and we never went there together. I wished he was there and I had moments of loneliness, but I went to Abbey Road because of his love of the Beatles, truly feeling his presence there, and I took pictures of things that I saw through his eyes, although I’d been to England many times. I did make a dream come true when I went to Washington, DC this past spring to see the cherry blossoms in bloom. It was bittersweet because it was our anniversary and I knew that Ben would have loved visiting the monuments, and I missed him but carried him in my heart, seeing everything through his eyes as if he was walking beside me. I have noted each of these excursions as milestone in my grief and some form of progress, though there was a sadness and loneliness in everything. My adventure in Atlanta was the first time that I felt anger.

As I walked through the Aquarium, which truly immerses you in undersea life in the most wonderous way, I not only missed Ben, but I was angry that he was cheated out of experiences like this. I remember going to the Boston Aquarium by myself and crying when I saw the penguins because it wasn’t the same without him. Nothing was. I had moments of tears at the Shedd Aquarium in Chicago last summer thinking about how Ben would have loved the dolphin show. I even bought a tiny snow globe at the aquarium and I placed it on a shelf that I have filled with special things of Ben’s so that, wherever he is, he knows that I am always thinking of him. But at the Georgia Aquarium, as I marveled at the glass tunnel with fish above and to my right and left, I wanted him to be as mesmerized as I by this magnificent place, delighting in the river otters and the sea otters, and giggling with him as the penguins waddled around  and belly-flopped into the water. We would have joked about the turtles, recalling our loving inside jokes. He would have been as thrilled as I was to see all of the animals in the magnificent setting. I noticed how attentive the aquarium was to people with disabilities, with designated viewing areas for people in wheelchairs, and Ben would have loved scooting around the space. This time, I was not just sad, I was infuriated that Ben could not enjoy this and that we could not enjoy it together. I had conversations in my head with Ben, took tons of pictures as he would have done, and looked at everything as if he was with me, but my emotions were different this time. It’s just not fair that ALS cheated him out of so much life.

It was a difficult decision to register for the penguin encounter in Atlanta. Ben and I loved penguins. Our first weekend getaway was to Mystic, Connecticut and we loved the aquarium there. We absolutely adored the penguins, who were a part of the dolphin show.  Penguins became very special to us and we had all kinds of penguin-themed memorabilia. I had arranged to take Ben to a local aquarium for a penguin encounter for his birthday in 2015. I booked an ambulette to take us and even an accessible hotel room in the hotel next door to the aquarium. The aquarium was kind enough to make special arrangements to accommodate us because the penguin exhibit was not wheelchair accessible. Unfortunately, the winter weather was brutally cold and Ben was afraid to go outside. Most unfortunate was that we never had another opportunity to make that trip.

Ben in healthier days in Woodstock, Vermont, 2001. We loved it there.

As much as I wanted to be face to face with a penguin, I found myself asking if I should participate, when Ben could not. Would I even be able to enjoy it without him? I decided to register and just go with my emotions. I did not exactly feel guilty about it, but I did not feel entirely comfortable with it either, and this is frustrating.

Through a series of events, I ended up doing the penguin encounter twice. The groups in all of the encounters were small- a couple of families and couples. I wanted to be one of those couples with Ben. Greeting and touching the penguins was exciting- they are adorable and fascinating and I loved seeing the bonds between the animals and their trainers. All I could think of was how much Ben would have loved meeting a penguin. I let myself participate as if I was participating for both of us. I know the clichés about life not being fair and Ben wanting me to be happy. I believe that he was watching. And, I have to believe, as Ellie wrote, that Ben wants me to have new adventures. Unfortunately, this was an adventure that we were supposed to have had together and that made it harder to enjoy with abandon.

When I saw in the gift shop a bag of jellybeans called “Penguin Eggs,” I had to take a picture- as I know Ben would have done- we loved jellybeans, and I know that he would have forever more called jellybeans “penguin eggs.” In my head, I will smile as I do that, too, and I will think of Ben and know that he is watching and smiling. I am determined to fight the anger.

The dolphin encounter was bittersweet. The first dolphin show Ben ever saw was during our first getaway in Connecticut, at the aquarium in Mystic and it was a blast. I had seen other dolphin presentations but seeing this one with Ben was particularly fun because he and I unabashedly let our inner children shine. I did feel his presence during that encounter and I believed that he was watching me. I know that some people do not believe in this, but I do, and it gives me comfort. I shared my joy with him and kept him with me in my heart, so he felt a part of the experience. I made mental notes of how he probably would not have been able to get to the training area and pool because they did not seem to be accessible. Then, I thought about how, just as he did in Walt Disney World, Ben would have focused on what he COULD do rather than what was not possible. He would have been enraptured watching the dolphins in their habitat.

Otters are my thing, but Ben would have been happily teasing me and celebrating my joy. I seem to be able to enjoy things more if I feel like I am sharing with him. Maybe I’m deceiving myself, maybe it’s just a way that I cope with my exasperation and sadness at his absence.

When I watch Up and see Carl and Ellie get old together, I have a hard time recovering from the tears. Before his ALS diagnosis, when Ben saw elderly couples holding hands and strolling along, he would always comment that one day we would look like that. When I watch Carl talking to Ellie after she is gone, greeting her photograph and looking at her chair, I see myself and how I still look at Ben’s chair and talk to him, and greet his picture that is my laptop background. I’m not comfortable with this angry phase that I’m experiencing. I prefer to focus on Ellie’s, “My Adventure Book” and revisit the pages of my book that Ben filled with so many memories and much love- even during the ALS days- and know that those pages will never disappear or be erased. Ben and I never talked about what my future would look like without him. On occasion, he would laugh and say that if I ever met anyone else, that he would haunt me like the Grim Grinning Ghosts at Walt Disney World’s Haunted Mansion. We never seriously talked about it.  So, I’m on my own trying to carve out a future that gives me joy and honors Ben’s memory. Just like Carl, even though I am struggling with old and new emotions as I move forward, and I need to keep Ben very present, I am filling the pages with new memories.

Up makes me cry a lot, but it is a beautiful film with a lot of hope. The positive perspective it lends to grief and to living with and past a painful loss can help lift you Up!

I also recommend the Georgia Aquarium and its encounter programs. It may not have a castle, but it is a magical place!

My new “Abby” memories from the Georgia Aquarium:

July 6 – Not A Traditional International Kissing Day

ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Once again, I am faced with the conflicting emotions of joy that school is over for the year, and sadness over the memories of the summer of 2015, Ben’s last summer. We spent it in the hospital, where he ultimately succumbed to ALS.  Today, July 6, marks the third anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  As I write this post, I am cuddled up with Ben’s favorite Disney throw, with Sully and Mike from Monster’s, Inc and personalized with his name. I covered myself with it last night, too. On these kinds of anniversaries, I refer back to my blog post from last year year. I can’t say that much has changed- it remains a somber day when I prefer to be by myself with my thoughts and our photos, and maybe watching Monsters, Inc., which always gave him such delight.

For me, this is simply the date when everything changed. I woke up this morning thinking about how I woke up on this date three years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with the Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

I remember that despite the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards family who had lots of questions, suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And, he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in last year’s post.

I did not make any plans for today, not knowing how I would feel, but allowing myself to be okay with anything I chose to do. I have learned that I cannot predetermine what’s right for me in these circumstances. I don’t want to hear that I should keep living, or I should make plans to distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my head is swirling and I just want to think about Ben, and that day.  It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was a lot of love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the lyrics of So This is Love, from the original, animated Cinderella.

Yesterday, I went for a walk in Central Park. I love walks through the Park, despite the heat, because I have my music in my ears and I can let my thoughts flow. I have my route, and I headed for Belvedere Castle, from which you can look down and see lots of turtles. Ben and I loved turtles and a turtle was his icon in the original messaging program that we used. I was shaken to find that the Castle was under scaffolding and closed to visitors. It was so important for me to see those turtles yesterday because of today’s anniversary.  Not knowing what to do, I proceeded on my walk and was lured to a little gazebo that was right on the water. I had never walked there before but I was drawn to it. There I saw several little turtles! I do look for signs that Ben is with me, and this was my sign. I took many pictures and just watched them for a while, talking to Ben in my head and knowing that we would have been so happy to have discovered them, at the same time feeling that he was with me. Further on in my walk, I found the fountain that I never seem to be able to find when I’m looking for it. I tossed some coins and made wishes (see my post on wishes), shedding a few tears. I try my Disney best to be optimistic even when I’m sad. Sure enough, when I walked to the water by the fountain, I saw more turtles and even some fishies. I have never seen so many turtles at the Park, and I believe that they carried the message that Ben is watching over me and that even as I keep moving forward, he will maintain a presence.

This date may always be a difficult day. In my mind, it will always be thought of as the day that everything changed. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

I do notice that the intense and debilitating grief has shifted. I know that today’s fog will lift, and that I will also remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Just not today.

 

Independence Day- On ALS and Independence

Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

I also can’t help but think of independence as it relates to ALS.

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores the physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly three years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.” This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

ALS,Grief

I always picture Ben like this, in his chair at his desk.

Happy and Hopeful Independence Day.

Walt Disney World
July 2014