ALS

Finding the Pixie Dust in Difficult Milestone Dates

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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

Today, July 6, marks the eighth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this is simply- or maybe not so simply- the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. Even after all this time, I still wake up dwelling on events that occurred on that morning, when 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 a  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.

In a post from a previous year (click here to read it) I recalled the details of that time. For a few years, I needed to rehash every one of those moments on this day, in particular. It was part of the way I processed grief and felt that I was demonstrating my loyalty to and love for Ben. I still struggle with that, but today I realized that I am finding a better balance between recalling memories and creating new ones. I do look for signs that Ben is with me and that he is okay with how I am living my life. I often ask him for signs.

I made plans to see one of my very favorite singers- Liz Callaway- at one of my favorite venues in New York City- 54 Below. I have loved Liz Callaway’s voice since the first time I saw her in the Broadway show Baby in the 1980s. Her voice is my go-to if I’m feeling happy, if I need a good cry or just want to get lost in beautiful tunes. It still feels a little uncomfortable to plan to do something where I will enjoy myself on a day that is definitely not enjoyable. But, as I have explained, I have begun to push myself and embrace however I feel. I actually went by myself, and although this highlighted my loneliness and aloneness, I liked the idea that I could just listen and relate to the music without being social or bringing anyone else into my thoughts. I don’t want to hear from anyone the cliches that I should keep living, that I should distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter.

As I said, I look for signs that Ben is with me and that I am making good choices that Ben would approve. Liz gave me several at this concert of “Screen Gems.” She began with “When You Wish Upon a Star.” A beautiful Disney song and one I have blogged about! I knew I was in the right place and Ben was right there with me. Liz also sang “Singin’ in the Rain,” which conjured such fun memories. Ben and I loved that film and it was one of the first two DVDs he gave me when he gifted me my first DVD player when we were dating. Ben loved to imitate Lina Lamont, saying “And I caaaan’t stand ‘em,” whenever I would complain about someone. If you haven’t seen the film, or it’s been a while, please treat yourself! Surprisingly, she sang a song that I love, from one of my favorite films- “It Might Be You” from Tootsie. Ben knew that it was my number one film when I needed to cheer up and it always made him laugh that I could even hum the score and would start laughing uncontrollably before the funny lines were even said, also saying them along with the film. It made him laugh that my dad and I made each other laugh quoting the film. I was happy to learn that Liz and her husband considered the tune “their” song. Another gorgeous song she sang was “The Place Where The Lost Things Go” from Mary Poppins Returns. That song, and the film, were very meaningful and poignant for me, as they were for Liz. She talked about the loss of her mom, which touched my heart, particularly emotional now because my mom’s birthday would be July 8. After I saw the film for the first time, I wrote a blog post about this song, which you can read by clicking here.

There was a lot of other beautiful music, laughter, joy and memories. In fact, Liz sang “The Way We Were,” evoking all I was thinking about the many memories that live in my heart.

As the happy, bittersweet and sad memories played in my head while I enjoyed the music, I realized that I was actually making a new memory by going to the concert. I feel the comfort of Ben when music- one of his true passions- brings up a memory of our relationship. Disney will always be ours. Ben knew how much I loved Liz Callaway and I know that he would be happy that this evening, I found peace in her music. The past was with me in my heart, but I am living in the present. As I see it, that’s a lot of pixie dust.

I miss and love you every day, Ben.

Thinking about ALS and Independence on July 4th

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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.

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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

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“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.

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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

Happy Birthday, Goofy!

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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

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

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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.

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