Caregiver

Wisdom From The Silly Little Bear On National Winnie The Pooh Day

Halloween 2012. Eeyore’s wearing a birthday hat!

Today is National Winnie the Pooh Day, in honor of A.A. Milne’s birthday. Pooh and his 100 Acre Woods friends have a most special place in my heart and memories. My relationship with Ben blossomed around Piglet and Pooh and it is one of the ways 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 three  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.

Today seemed a good day to revisit some favorite quotes from the silly little bear and his friends. They resonated during my caregiving days, through the darkest days of grief, and they continue to be meaningful and touching.

In the Disney Pooh’s Grand Adventure: The Search for Christopher Robin, Christopher Robin tells Winnie the Pooh, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you. 

I am still so deeply connected to my mom and dad, Ben, grandma, aunt Eleanor and many others who have left. They are all a part of who I am and are unquestionably always with me. The truth is that it is not always enough- sometimes not even close to being enough- but it is a lot.

“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. My presence was the tea and honey that my dad needed to feel more secure and cheered. As ALS took away his abilities, there were times that Ben 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.

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, or any terminal illness, can be a favorite day. There were definitely the big 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.

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. My dad never lost his desire to learn and help others. 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.

One of the most profound and bittersweet quotes from Winnie the Pooh, is“How lucky am I to have something that makes saying goodbye so hard.”  This time of year, in particular, is filled with a lot of milestone dates. I begin each New Year commemorating the anniversary of my mom’s passing. Then, February is a month filled with reminders of the many goodbyes I have had to say. The month is marked by my dad’s birthday, Ben’s birthday, and the anniversary of the passing of my grandmother and aunt Eleanor. It is also the anniversary of the passing of my sweet cat, Disney.

My memories are important to me. They are everywhere. Sometimes past and present blur in my mind and the reminders of the losses and the goodbyes are crushing. At the same time, I am so grateful to have had these people in my life. And, I’m grateful to Winnie the Pooh and his friends for helping me to find wonder, whimsy, insight and a positive, comforting, and honest perspective. Thank you, A.A. Milne, for bringing them to life.

October 2012
Ben would not be at all surprised that this Eeyore came home with me. Making new memories in 2018, but carrying Ben in my heart.

2024- My Year to Step Through Doors

It has taken me a while to get a grounding on my thoughts as the new year approached. I have found myself searching for the words and thoughts that best convey my feelings. I am not one for setting specific resolutions. For me, despite cautions about looking back, it is important to revisit how I feel about how the year went, and what I might like to feel like this year. It is a time to identify my growth and achievements, but also to focus on my struggles and look for inspiration and motivation. Of course, Walt Disney provides my guiding wisdom and captured my sentiments so well in this quote: We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths. I have referred to this quote a few times in this blog. It resonated when I was beginning to reshape my life as the depths of grief subsided. It continues to resonate as I choose new paths that I hope will lead me to fulfillment.

The past year had professional and personal highlights. I traveled, made strides in my writing, brought awareness of the needs of student family caregivers to my school. I made new friends and am at peace with shifts in friendships. Retirement is within reach, which makes the stress of teaching and our education system somewhat and sometimes more manageable. I have expanded my support group and workshop offerings, which is creating a whole new intriguing path. When I get nervous about the reality of my next steps, I remind myself that Walt Disney said, Fantasy and reality often overlap.”

I have been thinking about the film Up, and when Ellie wrote to Carl in her journal, Thanks for the adventure – now go have a new one!” I have opened new doors and continue to do so, I have had new adventures, and I have created a new life for myself. Lately, however, I find myself thinking that in many ways I am only standing in the doorway, not willing to fully step through into new adventures.

Although I have such a wonderful network of friends and colleagues, I still struggle with feeling very alone. Ironically, I am very independent, and grateful to be that way. If I want to go somewhere, or see a show, I am perfectly comfortable going by myself. Maybe even too comfortable. However, I am caught off-guard when doing something as simple as strolling, by a sense of aloneness. Yesterday, walking through the first snow in New York City, I immediately recalled how I would record these events for Ben when he was homebound. I even brought him snowballs. I whipped out my phone and recorded the snowfall as I always did. And I cried. I don’t know if that feeling will ever go away. At least, it doesn’t paralyze me as it once did, which is good.

My memories fill my days. They also fill my apartment. Once again, I ordered my photo calendar of Ben’s and my favorite Walt Disney World moments. I thought about creating a new 2024 calendar that featured my new memories. I thought I could even combine some of my favorites from the current calendar with photos I have taken over the past several years. Ultimately, I could not do it. It was not really that I felt disloyal to Ben either. It was that I could not stop keeping those memories alive and, basically, keeping our relationship alive. I still use our photo blanket, our photo shower curtain, and a bathroom filled with our Walt Disney World photos. Only recently did I start to really look around my home and what surrounds me. Can I really say that I want to find a new romantic relationship when my old one literally pervades so much of my current life? Would I be attracting love into my life without really being open to it? In the Pixar short, Carl’s Date, I related so strongly to Carl’s insecurity about finding love again. I felt like I was also looking for guidance, connecting to how he still acknowledged Ellie and had the support of Dug when he stepped forward. But he did step forward, and so will I. (Click here for my post about this.)

This year, I have made a great deal of progress with my writing. I have always loved to write, but it was my experiences in caregiving that led me to start this blog and stirred my passion. Ben and my dad, as well as a host of memories, were front and center of my writing endeavors. My book, which is now almost ready for submission, is based on this blog. A couple of years ago, I decided to pursue my long-held dream to write children’s books. After all, as Walt says, “All our dreams can come true if we have the courage to pursue them.” Though Christopher Robin has taught me that I am braver than I believe, I do not consider courage to be my strong suit. Still, I have taken writing courses, joined professional writing groups and learned a lot. I did find the courage to allow a small group of trusted people to read my book and children’s stories. Still, I stop short of seriously taking the next steps. I know that it is fear of success as much as fear of failure. This year, my intention is to walk through that door and see if I can at least get closer to having my fantasy of being published overlap with reality. I do know that all my loved ones believed in me- often much more than I believed in myself. Mufasa tells Simba in The Lion King, “So whenever you feel alone, just remember that those kings will always be there to guide you. And so will I.” Ben, my dad, my mom, my grandma and my aunt Eleanor are a part of so much of who I am and what I do. I will always strive to honor them in my actions. I just need to fully accept and find a way to place them in my heart while acknowledging that they are not here.

My book in progress.

So, 2024 will be the year that I apply some faith, trust and pixie dust to pursue a better balance between past and present that will let me not just open doors, but fully walk through them, knowing that I am on my own but bolstered by so much love.  

I wish everyone a peaceful, curiosity-filled 2024.

Best wishes from Abby and Tinker Bell

Thanksgiving, Gratitude, And What Does It All Mean?

Yesterday was Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.”  I have really tried to embrace that attitude and, for the most part, it helps me. I also give myself permission to acknowledge the difficult moments and not force myself to deny or spin those moments.

The truth is that Thanksgiving is a bittersweet holiday for me. Yesterday, I awoke teary, thinking about the family I have lost. These were the people to whom I was closest. While I am indeed grateful to be included in the plans of my friends, I cannot escape the feeling of aloneness. Though I have learned to coexist with grief, this is one of those days when I cannot fight the tears.

I think about my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I had been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel and express gratitude for each other was indeed a superpower because it gave us perspective to see the love that was there, and even to have some laughs. The love in those memories continues to warm my heart, despite the lingering sadness.

I think of my first Thanksgivings without Ben. It is my good fortune to have friends who included me in their Thanksgiving plans. I love my friends and spending time with them, and I sincerely appreciated the invitations, but the feeling of aloneness hovered. I returned to my apartment from these occasions in tears, weighed down by the unhappiness of not having any close family anymore and not knowing where I really belonged. At this time, my aunt Eleanor’s Alzheimer’s disease had also progressed to a point where I had lost the person I knew and each visit with her was yet another stinging reminder of my loss of family.

After a couple of greatly appreciated but painful Thanksgivings, one year, I decided to ignore the holiday, declining invitations and staying at home. It did not feel good either. But hey, I tried. Even when I have an epic fail as I did that holiday, I always pat myself on the back for striving to reshape my life and address the areas that are especially troubling to me.

This year, I originally planned to travel to London to completely avoid the discomfort of Thanksgiving and immerse myself in one of my favorite places, visiting people I love, too. For a couple of reasons- all positive and optimistic, by the way- I decided to postpone my trip. Still, it left me here with my discomfort. Who knows? I might have felt discomfort in London, too, knowing that I went away because I did not especially want or need to be home. I clearly miss the dependable comfort of family. Maybe, one day I will find it again. Maybe, being in a state of gratitude will help to manifest it. Too much of the touchy-feely laws of attraction stuff? Maybe. Or, maybe not!

As I said, I do have wonderful friends, and yesterday, I spent a lovely Thanksgiving evening with them. Again, I returned home feeling a mix of emotions. I let myself feel the heaviness of grief and missing my loved ones. I also let myself feel content that I did enjoy my time with dear friends. Being honest with my feelings- the positive and the negative- helps me to reflect honestly on gratitude and the spirit of Thanksgiving. I believe that it is in my acceptance of the bad moments, or days, that I began to understand what Walt meant by being in a state of gratitude. I make a practice of acknowledging gratitude, but I do not force myself to suppress my emotions.

In the 1960 Walt Disney Productions film Pollyana, Pollyanna describes the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every tough situation around and think about something you are glad about regarding that situation. As time has passed, I have learned that being “in a state of gratitude” is not to naively play the Glad Game (click for more). It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the especially important superpower of perspective. I have a good cry when I need to, or when something triggers it, but I also acknowledge and welcome experiences or insights into those tough times that compel gratitude.

For me, I struggle with a lack of confidence, and I want to frame my gratitude list this year in the context of achievements, so I can document and hopefully clearly see growth.

  • 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. I am grateful that I emerged from the darker days of grief to be able to enjoy creating new memories with them.
  • I am grateful for my love of animals, as they are often more intuitive and genuine than humans. And, they completely delight me! Doing animal encounters and interacting with animals gives me such a sense of fulfillment. It connects me to my dad because he also deeply loved animals. I did plan to do a penguin encounter with Ben, but a winter storm made travel in an ambulette and with his wheelchair too daunting. I did feel guilty doing my first penguin encounter without Ben. But, I have learned that I take Ben everywhere with me, and even when that is not enough, it is something. For this, too, I am grateful.
  • I am grateful to be working with Hope Loves Company, facilitating online “hangouts” for kids who have a family member with ALS, leading crafts workshops at the organization’s online camp event, and participating in the development of new endeavors. I am sorry to meet these young people at this devastating time in their lives, but grateful when I can bring them some laughs, maybe some insight, and an opportunity to socialize with other young people who share the experience of ALS in their families.
  • I originally began a club in my school intended for students who are caregivers for ill family members or even helping to raise their siblings. It has shaped up to be a club of caring, and somewhat shy, kids who want to find themselves and support others in school, in the local and global community. I am grateful that my club has worked to raise awareness in our school about student family caregivers and their struggles. We have conducted events for November’s National Caregivers Month. I have also been leading professional development sessions for teachers and staff that focus on addressing the needs of student family caregivers. I am grateful and proud to have made caregiving a part of our school’s dialogue.
  • 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 I am thankful to have connected with many people.
  • I am grateful to have been working diligently on my writing. I take classes and joined writing groups to help hone my skills and learn about the publishing world. I have a caregiving book and picture books in progress. I mustered the confidence to share drafts with beta readers and have gotten positive feedback and constructive criticism. I am hopeful and optimistic about being a published author.
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy, and opportunities to reflect and sort through my feelings. I am 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 for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

There are and there will likely continue to be setbacks and I remain consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad, mom, and grandma proud. 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 that I will be okay because I have the superpower of gratitude that allows me to embrace all my emotions and seek a balance between positive and negative moments and thoughts.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I always welcome you to share your own in the comments.

With all good wishes,

Abby

Wishing Well at Walt Disney World July 2014

Ten Things I Learned About Caregiving From Mary Poppins

Since today, October 1, marks the birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Happy Birthday, Julie Andrews! Thank you for all of the joy you’re brought!

All photos: Mary Poppins (1964), Walt Disney Production

#Caregivers #Caregiving #ALS #MaryPoppins #Disney

Thinking about ALS and Independence on July 4th

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.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

I also can’t help but think of independence as it relates to ALS. It was on July 4, 1939, now known as Lou Gehrig Appreciation Day, that the renowned Yankee player stated at Yankee Stadium: “For the past two weeks you have been reading about a bad break. Yet today I consider myself the luckiest man on the face of the earth.” I think I will always be in awe of his grace and dignity. Of course, I saw it in Ben, too.

ALS,Lou Gehrig,Yankees

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 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.

July 2014 Walt Disney World

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 witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. In the process, I compromised my own 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.

For a long time, I could relate to Megara from Hercules, who said, I’m a damsel, I’m in distress, I can handle this. Have a nice day.” Sometimes, I feigned independence and being “fine”  to try to convince others that I was okay, either for their peace of mind, because I did not want to confront their judgments and unsolicited advice. Sometimes, it was to convince myself. I owned my pain- I still do- but I have also learned to be unapologetic for my timetable and ways of processing grief. Independence originally felt like loneliness. It felt like I had no purpose, and I did not want to be my own purpose. Only now, nearly eight years later, am I more comfortable with the concept of independence. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence and to support others who struggle with this. I blog, volunteer and do freelance consulting to maintain my deep connection to people who are experiencing ALS, as patients or caregivers. I am writing a memoir and workbook for caregivers and introducing in my school small initiatives to assist students who are family caregivers. Although Megara used her independence as a way to fend off people and not admit that she was vulnerable, I feel that embracing my independence has made me more able to communicate, admit when I need help, and build a new loving relationship. The challenge is finding the perfectly imperfect prince!

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 us take this time to honor and support those who struggle with 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 Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

Wishing well at Walt Disney World July 2014

Happy and Hopeful Independence Day.

Tinker Bell and I wish everyone a happy and hopeful Independence Day