Caregiving

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

Global ALS/MND Awareness Day- Never Lose Hope

“You don’t lose hope, love. If you lose hope, you lose everything.”Mrs Potts , Belle’s Magical World

Today is Global ALS/MND Awareness Day. On this day, we honor and support people with ALS, as well as their caregivers, families and all who support them. August will mark eight years since Ben left this world, free from his struggle with the disease. Today, I want to offer some wisdom from Mrs. Potts of Beauty and the Beast fame: “You don’t lose hope, love. If you lose hope, you lose everything.”

I have written often about Ben’s bravery and persistence. It has taken me a long time to come to understand that I was brave in a different way. And, I can honestly say that hope played a tremendous part in our lives. There was hope that things would get better and we would find innovative ways to help him eat, use his electronics, and maintain a good quality of life. There was hope that the next day would be less stressful. There was hope that each day would have some smiles and laughs. There was hope that I would remain patient. There was hope that Ben would accept that his needs were increasing. There was hope that he would have more time. There was hope that the disease would progress slowly. There was hope that he would transition peacefully.

Was it naïve to hope? Was it like my tossing coins in Cinderella’s Wishing Well? I don’t think so. To wish is to hope, and I have often written about wishes on this blog. Hope allowed me to reach for optimism. It allowed me to see the positive things, even if the big picture was not good. It allowed me to recognize and be relieved and content that one day was better than the prior one, not because the ALS was getting better or going away, but maybe because we were in better moods or successfully solved a problem. Hope allowed me to fantasize in a healthy way, remembering wonderful times and trying to recreate those and create new ones. It allowed me to be a creative thinker. It allowed me to smile, even through tears.

Hope was my pixie dust. Because I had hope, I was able to open my mind to finding ways to help Ben and to help myself. Hoping beyond hope that Ben would transition peacefully gave me the mindset to work towards making that happen. Love let me cope with the moments when hope was waning.

Hope also has helped me get through grief. It has allowed me to envision a positive future without Ben but with love. It allows me to seek opportunities to help others who are dealing with ALS. It has inspired me to raise awareness about student family caregivers and to find ways to support these students in the school where I teach.

I still have hope and I do make wishes. I hope that I always honor Ben’s memory in a way that he would appreciate. I hope that my blog and interactions with people affected by ALS will help and comfort them. I hope that I will find love again. I hope beyond measure that a cure will be found for this horrible disease.

In a way, hope is a gift, because it allows you to escape some harsh realities. I hope that all of my readers who are affected by ALS will find ways that inspire you to be hopeful and to see past the dark clouds to clear your mind, if only temporarily. There are reasons to be hopeful as we look at the research being done. There is also hope for comfort and the future as we look at the communities and forums of supportive and caring people that connect us because we share a deep bond of understanding and empathy.

Yes, this is Global ALS/MND Awareness Day. But, I hope that the determination never wanes to continue to raise awareness of ALS and the brave battles fought by people like my Ben.

I agree with Mrs. Potts. If you lose hope, you lose everything.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well
2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

#Global ALS/MND Awareness Day #ALS #caregivers

“Peter Pan and Wendy” – The Power Of Happy Thoughts and Friendship in Caregiving, Grief and Life

ALS,Caregiving,Grief,Walt Disney World
Ben and I with Peter Pan and Wendy Walt Disney World in 2006 Before ALS

I am pleased to say that I found Peter Pan and Wendy, now on Disney+, to be an excellent and thought-provoking live action adaptation of Disney’s beloved animated story. This film tells the story of how the relationship evolved (or disintegrated) between Peter Pan and Captain Hook. I found myself thinking of my caregiving days, relationships, responsibilities and how they have affected my perspectives and who I am today. This film helped me to reflect on what brings us to where we are in our lives. Please note that there are spoilers in this post.

We learn that Peter Pan and Captain Hook- whose name actually is James- were once best childhood friends. However, Peter banished James from Neverland because James said that he missed his mother, a sentiment that was forbidden by Peter. When Hook eventually returns, they are enemies. Peter says that he survived on his own not with faith, trust, and pixie dust, but rather, with the help of his friends. We know this is not true, because these were exactly the ingredients he used to teach Wendy, John and Michael to fly. The lie did achieve Peter’s goal of hurting James, who became embittered and evil because of the anger he harbored against Peter for abandoning him. Hook expresses that the hard part of getting old is seeing that, “Your friend can look you in the eyes and not recognize you.” This quote resonated with me. Caregiving changed me. I know that. It affected some of my relationships. Importantly, I think about the way my relationships with my dad and Ben shifted to one of caree and caregiver. It was hard to reconcile that I was becoming the parent to my dad and it was hard to feel the shift of Ben’s and my relationship. There were times that we lost who we were to each other. There were times that we lost our own identities and did not recognize ourselves. Some friends got to know me better, others drifted away. Friends who were truly there for me saw and understood me at times that I had a difficult time recognizing myself. I did recognize and acknowledge my friends and the love and support they offered. Other people disappointed me with their distance, disinterest or even dismissal. Though I had enough happy thoughts and memories to keep from becoming bitter, I sometimes still fret that some of these relationships became so superficial. I felt that these people did not even try to see me and I also struggled with the fact that I barely recognized these people as the friends they once were.

As in the original story, Peter Pan teaches Wendy, John and Michael to fly by directing them to fill their heads with happy thoughts. Tinker Bell is there to add the pixie dust. Wendy’s mind floods with lovely memories that quickly take her into the air. Memories have been a focal point of my own life, particularly as I have coped with grief. Although the sad memories of illness and loss continue to occupy space I my head, I have found that more and more, my mind seems to gravitate to the more joyful memories. I like to surround myself with photos and other memorabilia that make me smile. I let myself have setbacks but don’t dwell on resentments and negative memories. At times, I write about them to try to sort them out and give them their say. I want to be clear that I have not rewritten my past in a way that has omitted the difficult times and people, especially when I want to honestly address the challenging aspects of caregiving and grief. Still, I tend to conjure the better times. While I never literally left the ground, that perspective has served to lift my spirits and let me rise from depths of grief.

The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic. During my first visit back to London after losing my dad and Ben, it also brought a sense of hope.

Unfortunately, Hook feels that he has no joy or good memories to propel him in a better direction, now defined only by his hook. On the contrary, Wendy is bolstered by positive, loving childhood memories and she provides the mothering that soothes the Lost Boys. Unlike Hook, Wendy can save herself with her happy thoughts. This is also something that I can relate to. I have said that caregiving was my most difficult, frustrating and devastating experience but also the most loving, meaningful and rewarding experience. The positive and loving memories have carried me forward.

In the original and in this film, Peter Pan says that “To die would be an awfully big adventure.” I find this statement particularly unsettling, particularly in light of caregiving for my dad and Ben. I can attest that neither Daddy nor Ben ever referred to their fates in that manner.  But, Peter is a boy who is not allowing himself to grow up and mature. Wendy, on the other hand, declares that to live would be an awfully big adventure and that “to grow up might be the biggest adventure of all.” There is great appeal in a Neverland kind of existence, free of responsibility and rules. I am someone whose inner child shines brightly. However, I have also pointed out that my whimsical nature does not mean that I am not grounded in reality. Experience has taught me that there is tremendous satisfaction in taking intimidating leaps ahead to cultivate positive actions and loving, deep relationships, even if the growing pains include uncomfortable changes.

Tinker Bell has always been a favorite character of mine, so much so that I named my cat Tinker Bell because she was small and, in my Disney mind, fairy-sized. In this film, Tinker Bell still possesses her feisty, clever, and adorable manner. Though she does not speak, Tinker Bell is expressive, and Wendy takes the time to understand, communicate with and value her. When they part, Tinker Bell does utter a most profound and valuable expression of gratitude to Wendy, saying, “Thank you for hearing me.” To me, that was the heart of the film. Being truly heard and seen for who we are at our core is something that we all want. Feeling validated is something that we need. I saw that in my dad as he grappled with being older, weaker, and more vulnerable. I saw it in Ben as ALS took away his ability to physically care and speak for himself. They wanted to be heard and seen, to know that they mattered. During caregiving and then as I have moved through grief, I, too, wanted to be heard as I worked through how and when to delve into the world of the living and reshape my life. I also recognize this in the caregivers and grievers I support. It is something that we must all practice because it does not always come easily when we see things through our own lenses.

Tinker Bell has a little Tinker Bell costume and doll.

I am still discovering what happens when I head “to the second star to the right and then straight on till morning.” I witnessed and felt the power of thinking positive thoughts, intensively listening and hearing, and being recognized for who we are. I am grateful for those who heard and saw me and who continue to support me. The experiences- as well as my firm belief in faith, trust and pixie dust- brought me to this point in my life and compelled me to want to give back and work in support of caregivers and those in grief.

I encourage anyone reading this to document your own experiences of feeling heard and seen, and of doing the same for others. These will become your happy thoughts. Feel free to share in the comments.

Looking Back and Ahead to a New Year Through a Disney Lens

In Mary Poppins Returns, Mary Poppins said, “When you change the view from where you stood the things you view will change for good.” I believe that the past year helped me to shift my view in positive ways. I put into practice Mary Poppins’ good counsel that, “When the world turns upside down, the best thing to do is turn right along with it.” She, along with other Disney friends, helped me to find perspective, insight and positivity that I want to take with me into 2023.

As I think back to the approach of 2022, Remy from Ratatouille stands out for his very true statement that, “The only thing predictable about life is its unpredictability.” I would not have thought that last year at this time, I would spend New Year’s Eve knowing that I had upcoming surgery for breast cancer, to be followed by radiation. It was not something that I shared with many people, and I am still proud of myself for this decision and for honoring my respect for my own privacy. This year, I am relieved and thrilled that my experience with cancer is only a memory. I am so fortunate. Though I would have preferred not to have had to deal with illness, I learned that I can turn upside down with my world, and I could choose to view the experience as in a positive way, in that it helped me to find, or acknowledge, my inner strength.

Throughout my cancer treatment, I conjured a bit of Megara from Hercules. “I’m a damsel, I’m in distress, I can handle this. Have a nice day.” I never thought of myself in this way, generally perceiving myself as pretty weak, despite the bravery I was repeatedly told that I displayed during my days as a caregiver for Ben and Daddy. Also, I am not a good patient, to put it mildly, and I am terrified of even the anticipation of discomfort. Thankfully, I healed well, I attended daily radiation treatments for a month, during which time I soothed my heart and soul with daily visits to Central Park, where I fed my little buddy squirrels, was counseled and protected by cardinals, developed a good understanding with some blue jays, and watched the seasons change. On some days, I even treated myself to a Broadway matinee. Yes, Christopher Robin, I was braver than I believed and stronger than I seemed. Maybe I was smarter than I thought because I found ways to calm and energize myself, surrounded myself with a small group of people who were my champions, and gathered and worked so well with an incredible medical team. Medical leave was stressful, particularly financially, but I tried very hard to shift my view and to recognize and embrace that it was also a rare opportunity for self-care and reflection.

One of my favorite pictures.

The truth was that I did not miss being at school. I missed some of the students and I missed my club. But, I did not miss the job or the environment. It took a while to realize that this was not a bad realization.  Instead of dwelling on not wanting to teach and wanting to retire (I can’t deny that I do spend a lot of time fantasizing about this!), I was presented with a chance to think about the things that really matter to me, things that I want to do, where I have come from, where I was, and where I would dare to go. I had trouble focusing because I was caught up in my medical treatment and healing, but I realize now that I was, in many ways, setting myself up to follow different paths. Walt Disney said, “All our dreams can come true, if we have the courage to pursue them.” The upside of my health problem was getting this time to think through my dreams and how to summon the courage to pursue them. I want 2023 to be a year where I find more courage and confidence.

I have continued working on my caregiving memoir/workbook, which is now on its fourth draft and looking good. I have also taken several classes on writing for children, which is something I have wanted to do for longer than I can remember. I am playing with a few ideas and have dedicated time on a weekly basis to work on my writing. Even when I am not writing, my head is spinning with ideas, and this feeds my soul and inspires me. Whether or not my work ever gets published, I am thriving as I push myself and my creativity to grow. Although timid, I think of Quasimodo and know that each time I put pen to paper, or keystroke to keypad, “Today is a good day to try.” I aim to make 2023 a year of good days to try!

Working on behalf of caregiving kids has also been at the forefront of my goals. This year, for the first time, my club held a couple of school-wide activities to honor November’s National Caregiving Month. We invited everyone to contribute words of support and encouragement on a huge banner for our students and staff who are caregivers. The positive response and feeling of pride among caregivers AND those who were writing the kind words was truly heartwarming. We also held journaling workshops that were so popular that we will continue them throughout the school year. As I have put myself forward and concentrated on my desire to work with children, I found an opportunity with Hope Loves Company to be a leader of an online support group for children who have or had a parent or family member with ALS. I have volunteered with Hope Loves Company in the past, and I am delighted about this new role. I am also strategizing ways to expand on my ideas in a way that extends beyond my teaching days. I get nervous about the possibilities and tend to put obstacles in my own way. I know that a lot of this is confidence, and some of it is my nature as a worrier. Still, I have seen that shifting my view and putting myself out there and reaching towards the future with my goals in mind has had positive results. I must continue to summon Merlin from The Sword and the Stone, who said, “It’s up to you how far you’ll go. If you don’t try, you’ll never know.” It is my wish and my intention to keep trying and keep moving farther in 2023.

I love Edna Mode, but I think that I will always disagree with her comment that, “I never look back, darling. It distracts from the now.” Looking back to my caregiving days helps me to offer compassionate care to my students who are caregivers and has driven me to incorporate this into my teaching and my future plans. Even as I look ahead, I remain attached to my memories and the rituals I have established to honor them. I have added to my Christmas trees with ornaments from my travels and that conjure good memories and I continue to place Ben’s favorites where he always liked and could see them easily on the tree. That feels right to me. I have written about the photo calendars I reproduce each year that contain Ben’s and my favorite photos from Walt Disney World (click here for more on that). Each year, I re-ordered the calendar, which has been a source of comfort despite leading me to wonder if it kept me too grounded in the past. I did not change the calendar from year to year because it has been something that I rely on as it is. However, this year, when I returned to the web site to place my order, I learned that the company has folded. There was that unpredictability that Remy spoke of and it sent me into a complete panic. It felt like another loss. I researched other online sites and was devastated as I tried to recreate my calendar. I realized that I was not going to be able to make an actual replica. This led me to wonder if I should, in fact, try to make a new kind of calendar with other pictures. Ultimately, I could not let go of my Ben calendar. I am not ready, but I still think that’s okay.  I spent hours revisiting our photographs and the original calendar and I created a new version. In true Mary Poppins form, I decided to view this activity as a good opportunity to take the time to really look back and spend time with the memories and then, to choose photos that still strongly stand out among my memories. They made me smile. I learned that my calendar is an important ritual, but that I can also adapt, adjust and even change some of the things I do, while still maintaining my connections to the past. Sorry Edna, but looking back helps me step into the now and look ahead. Still, with the knowledge that I carry the memories and the people in my heart always, in 2023 I intend to be more present in the now, maybe even opening myself up for new romance.

July 2023 calendar. Slightly different arrangement but same photos and memories. I guess that’s a good analogy for grief- the memories may shift somewhat but they are still there and strong.
February 2023 calendar page. Different page but still pictures filled with love and a trajectory of ALS, too.

Ben and I never had big New Year’s Eve celebration. I did enjoy finding a new recipe and cooking a lovely dinner for us. All that changed with ALS anyway, once Ben could not chew. Tonight, Tinker Bell and I will have a peaceful evening. Mommy home and next to her is all Tinker Bell wants on any given day. I will be thinking about the past year and the things that I want to bring with me into the new year. Ben would tell me that you “can’t spell KickASS without KASS.” I’m also thinking of his hero Buzz, who would tell me that I can go “To infinity and beyond.”  I am a bit more cautious, and, always a believer in fairies and fairytales, recall Cinderella and her Fairy Godmother, who reminds me that, “Even miracles take a little time.” I can wait. I do hope 2023 is filled with some sparkles and pixie dust.

The 2022 tree- some old and new ornaments, but Ben’s favorites still remain in the place he liked them.

I hope that everyone has the new year they wish for, or, at least the peace and ability to find a positive view and to gracefully turn upside down with the world when necessary.

Our 2022 Holiday card. Tinker Bell does not exactly share my enthusiasm for taking this annual photo, but she managed to humor me.

Happy 94th, Mickey and Minnie!

Happy 93rd Birthday!

From the Mickey Original exhibition in NYC

Dear Mickey and Minnie,

Age is just a number, especially thanks to you, because you bring out the inner child in all of us.

I always miss my mom and Ben on this day. They surely would have celebrated the magic. I must admit that I feel pretty lonely at times like these. But, I’m celebrating the long history that we have and remembering wonderful, whimsical times with and about you.

Though you’re a few years older than my mom would have been, she loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse and Epcot Figment in her arms. My mom was the consummate child at heart, and I get that from her!

Mickey Mouse, Walt Disney World, Disney
My parents with Mickey in 1987

When Ben and I began our relationship, our first dates often began with a stroll through the Disney Store that was near the office where we worked and met. We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I have kept those.

We always treasured our visits to Walt Disney World, so after Ben’s ALS diagnosis, the first thing we did was book a trip to Walt Disney World, and we were so fortunate to be able to go four more times. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney
Mickey’s Not So Scary Halloween Party 2012

I admit that I was the one who had to greet all of my Disney friends. But, with you it was different. Ben always wanted to see you. And, after his ALS diagnosis, it was emotional and tear-filled. With an ALS diagnosis, we wanted and needed to feel the pixie dust, and more than once I asked you for some magic. You both made a fuss over him and gave me the hugs of support that you just knew that I needed. I will never forget that.

Mickey was always there to help Ben.

For as long as he could, Ben would insist on getting out of the scooter and walking to stand in his pictures with you. It was when he chose to ride his scooter and then electric wheelchair up to you  that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Deciding that he could no longer walk up to you was a sign that ALS was winning the battle. But, Ben also had an incredible attitude, never lost his smile and laughter, and he remained determined to engage in life, especially with you at Walt Disney World.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief
July 2014

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Since he has been gone, you have continued to entertain, console and inspire me. I was so happy to see you both when I returned to Walt Disney World back in October of 2019. I was grateful to have an opportunity to thank you for all that you did to raise our spirits and levels of hope. Although sadness loomed due to Ben’s absence, hugs from you let me connect with the past, feel secure in the present and know that I can count on you when I hit bumps in the road in the future. That is quite a gift!

I continue to find comfort and optimism from you. I look forward to returning to Walt Disney World and seeing you in person to get some pixie dust and Disney magic.

On your birthday, I shower you with tremendous gratitude, loyalty and love.

Happy Birthday, Mickey and Minnie. May you always continue to be the spark of hope, inspiration and happiness for children of all ages.

I will always love and thank you,

Abby