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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

Comforting Wisdom From Mufasa On Father’s Day

I’ve written in prior posts that my dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.  For this reason, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday does not really bring me down. After all, I already miss him. I think that the hardest part of holidays like this is that I am reminded that I don’t really have traditional family anymore because the family I was closest to are not here anymore (click here to see that post).  I do believe that they are always with me, and watching over me, and that is a comfort. The cardinals in Central Park remind me of that, too, which is one of the reasons I have become so attached to being there.  Still, there are those times that I just want to pick up the phone, or feel a touch. I don’t fight the moments of sadness, but I never lose sight of how fortunate I am to have them. I use this day to revisit posts I have written over the years, reflect on where I have been and where I am today, and think about the comforting good memories. Mostly, I find myself hoping that my dad would be proud of me and happy with decisions and choices that I have made in my life.

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

I have shared many memories of my dad, from his time in the Marine Corps to his love of animals to his sense of humor and wonderful laugh. More and more, I see how he has influenced who I am, in the good and not so good ways. People might think that I spoil Tinker Bell, as I did Disney and Tiffany, but I come from a family of pet spoilers! Daddy never minded that our dogs loved to chase the squirrels, though he would shake his head as they barked at the same tree while he knew the squirrel had probably climbed to the next village! We loved animals, and I’m sure that he would be thrilled at the little relationships I have developed with my Central Park buddies. He would also joke at how unhappy our schnauzers would be!

With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through and his mother was from Ukraine (I believe that my grandfather was from Russia, but the borders and countries changed so often then that it’s hard to say). As much as I miss his presence, I am actually grateful that he is not living through what seems to me to be the downfall of this country, but I miss the comfort of his explanations. Daddy was a yeller, and I know that he would be calling me to scream about every outrageous attempts to destroy our democracy. I did trust his judgment on world events because time and time again events did play out according to his predictions. I think back to the days of Dan Quayle, when Daddy and I would rush to the phone to call each other as soon as we heard one of his mistakes. I even got him a subscription to the “Dan Quayle Quarterly.” Now, in light of what he and I would definitely consider damage to the country, Dan Quayle’s errors would be a welcome bit of relatively harmless comic relief!

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

This year, when I took some of the students from my club to the New York Aquarium, I recalled for them my own first visit with my parents and how my dad laughed when I saw a real octopus. I thought it would look as cute as the ones in the cartoons! I have a real love of octopi now, especially because they remind me of my dad. I treated the students to the tickets and to lunch, which they appreciated, and I know that it is something Daddy would have done. I don’t deny that teaching content is not where my heart is these days, but the moments of imparting life lessons and fostering compassion and kindness is a legacy left by my parents and became an actual part of my teaching experience when Daddy was alive. When he was alive, he often contributed to supplies for the arts projects I did with the kids. I remember at parents conferences, several parents asked how he was because the kids went home and expressed concern that he was having surgery and/or was in the hospital. I did not discuss it much with them but I did let them know when I would be absent due to a medical issue of my dad’s. Daddy’s kind generosity is what I emphasized with my students and what has surfaced so beautifully in members of my school club. The students are kind and I am touched when they say that my compassion inspires them. Really, those qualities were gifts from my parents. When I see the many students who do not have fathers to celebrate, for a variety of reasons, I know exactly how fortunate I have been in my life. Sometimes, it has been those very students who most value hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” While I always enjoyed bringing new experiences to the kids, an added and especially touching aspect of this involvement of my dad was that for many kids, we were providing a feeling of being cared for, a real idea of family.

My students looking at the octopus as I did with my dad.

Today, I also remember that Daddy never wanted me to be sad. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney World visits with Ben, he beamed because he said he loved to hear me laugh and happy. I cannot count the number of people who stopped me to tell me that I was my dad’s world. He was the consummate pessimist, except when it came to me and my potential, and I was his consummate cheerleader. At a time when I am pursuing writing and other ideas, I must to constantly summon the confidence my dad had in me that I have never had in myself.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

Mufasa told Simba, “The great kings of the past look down on us from those stars…So, whenever you feel alone, just remember that those kings will always be there to guide you. And, so will I.” Daddy would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am and what I aim to accomplish. Not a day goes by that I don’t think of or mention him, and hope that I do justice to him and his values. Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

I love you and miss you, on Father’s Day and every day!

Happy Birthday, Goofy!

When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.

Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie.  A couple of times, Mickey even helped me to help  Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. Ben became overwhelmed and he began to cry. It was a sad and emotional meet and greet. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.

It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.

Thank you and Happy Birthday, Goofy! You are 91 years young, and a forever friend.

Two Goofy guys! July 2014

Mother’s Day Through a Disney Lens- She Lives in Me

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We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. The truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. Still, there is always a feeling of not belonging, the sting of realizing that I didn’t have their close and unconditional love anymore and the knowledge that my celebrations with them will have to live in my memories. I will spend the day at the theater, which is something I enjoyed with my mom, but something that always brings me joy and peace. Living in a house with Grandma, in many ways I grew up with two mothers, and I honor both of them today.

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Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it, and they must honor her. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.

In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” 

I love when people tell me that they see my mom and dad in me. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

 Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:

Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

(Composer: Marc Shaiman; Lyrics: Scott Wittman)

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.

Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!” This is last year’s Mother’s Day selfie. I am hoping that I can coax her once again to pose with me.

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I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.

Happy Mother’s Day to mothers of humans and all creatures, great and small. If you’re missing your mother on this day, I hope that you will take some time to try to feel her presence and the ways that she may live through you.

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