Grief

Not Your Typical International Kissing Day Thoughts

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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

The narrator (Fairy Godmother) of Disney’s 2015, live-action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back and say that after more than a decade, I still feel the pain of losing Ben. While pain has not turned to memory, there has been a gradual shift from being immersed in deep suffering and floundering, to embracing a wide range of memories of our life together, and also to accepting and even enjoying my “present”. 

Today, July 6, marks the eleventh 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 the date when everything changed. The painful memories surrounding this day begin to surface with the end of June and the arrival of July.

I have learned not to have expectations about how I will feel on milestone dates, but this has remained a particularly difficult day. I woke up this morning, as I have each year, with vivid memories about how I woke up on this date eleven years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with 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.

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

It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was much love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the song title So This is Love, from Disney’s original, animated Cinderella.

Today, I just want to think about Ben, and that day. I will watch Monsters Inc and think of how he loved Sully. This evening, I will host two online chat groups for Hope Loves Company, where children who are impacted by ALS because they have or lost a family member to the disease can informally hang out. It’s important to me to support caregivers, particularly young people. I might facilitate the groups, but the kids inspire me with their resilience, insight, and spirit.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled with the memories of Ben’s last summer. This date may always be a difficult day. In my mind, it will always be thought of as the beginning of the end. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

But, there is always pixie dust and Disney magic. This morning, I received an email from the Theme Park Press book designer of my soon-to-be-published book, Pixie Dust for Caregivers. I should see layouts this month. Later this month, one of my poems will be published by Little Thoughts Press, a magazine for and by children. This morning, I received a link to share where the issue can be preordered. If you would like to learn more about the issue and this wonderful magazine, click here.

Sorry Fairy Godmother, pain is not just a memory. Now, I find that the pain is in managing the memories in the context of the present conflicting emotions of joy and sadness (Inside Out is real!). Still, I like to think that Ben aligned the stars so that I would have these positive moments on what continues to be, after all these years, a rough one. Disney magic indeed. Ben, I hope that you know that I am thinking of you today and sending kisses, with love “to infinity and beyond.”

Walt Disney World, 2002
The pre-ALS days.

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Guidance From Mufasa On Father’s Day

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“Whenever you feel alone, just remember that those kings will always be there to guide you and so will I.”- Mufasa, The Lion King

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, Father’s Day does not really bring me down. In fact, I returned on Monday from almost three weeks in Scandinavia and I did not remember the date until I listened to the news. The truth is that I don’t need a holiday to remind me that I already miss him. I do believe that he is always with me, watching over and guiding 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 or loneliness, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them.

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! He 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 have been feeding the squirrels with me, thrilled at the little relationships I have developed with my Central Park buddies.

With all of the chaos in the world, I miss getting Daddy’s perspective, particularly given his extensive knowledge of history and the military. While I generally do not address politics in this space, I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through. 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 attempt 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!

Daddy’s kind generosity certainly guided me in my approach to teaching and interactions with students.  When I saw the many students who did not have fathers to celebrate, for a variety of reasons, I knew exactly how fortunate I have been in my life. Sometimes, it was those very students who most valued hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” When he was alive, he often contributed to supplies for the arts projects I did with the kids. 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. I know that he would be pleased that I work with Hope Loves Company to support children whose families are affected by ALS. And, I know that he would be asking how he, too, could support them. That’s just the way he was- supporting me and others.

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

Daddy never traveled but he encouraged me to see the world. I take him with me in my heart. In Denmark, Norway, and Sweden I visited a Jewish Museum and a Resistance Museum. I saw an actual boat that smuggled Jewish people from Denmark to Sweden. My dad would have loved the history. I was struck by the pride of the Scandinavians in their resistance efforts. It drove home for me that these are people who lived through war and occupation. They do not understand how we do not see the dangerous warning signs. I have written about times when I know my dad is with me. When we left the Resistance Museum in Oslo, I saw a man walking a Giant Schnauzer. I always seem to see a Giant Schnauzer- not a commonly spotted dog- on dates and occasions that are relevant and meaningful to my dad. I know my dad was with me at that museum.

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. Daddy, Ben, my mom, grandma, and aunt Ellie are all encompassed in the heart of my soon to be published book, Pixie Dust for Caregivers.

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.

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. 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.

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

Happy Birthday, My Mickey

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ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

Today, February 21, is Ben’s birthday. Yet another hard February day. I found myself resigned to the day rather than dreading how I would feel. I seem to find comfort in planning to spend the day immersed in the memories. I was able to spend a little time with a friend of ours, which was nice. It makes me happy when I know that Ben is remembered.

For the past few years, I have made a point of traveling on a train on what I call “Ben days.” This year the weather has been so precarious that I decided to stay home. I did miss having a little retreat. Last year, while on my little journey, I enjoyed writing, and I even wrote a poem about Ben that reflected on my train journeys. I’m reposting it here.

I began today by watching the video that I made for my Ben’s birthday post on the blog the year after he left the earth. So many happy memories, even though many photos reflect how Ben was changing as his ALS progressed. When I think back to starting this blog I remember how much time I spent creating these videos. I don’t think I realized how important the process was in coping with grief. It hurt to look through all of the photos, but the memories were what I had and they were everything. Also, Ben and I loved to master computer programs and I knew he would be very proud of my products.

Another “Ben day” tradition is to watch Ben’s favorite Disney films. I watched Monster’s Inc. Ben loved Sully so much. Sully was one of the first “people” we told about our engagement. He also made such a fuss over Ben when Ben was in the wheelchair. It was truly touching and adorable. I am always most moved by the scene in the film where Mike reconstructs Boo’s door and Sully provides that one piece he saved, which allows him to reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, with the realization that my loved ones are not really there. Just the memories. They simply are not always enough. Especially in February, when that’s all I have.

This image has an empty alt attribute; its file name is benabbysully-1024x683.jpg

I am no longer paralyzed on days like today, but February will likely always be a melancholy month filled with anniversaries of the loss of Ben, Daddy, Grandma, and my cat Disney. I have learned to coexist with grief and be intentional in dedicating the day to good memories and focused reflections. That feels right to me.  

Happy Birthday, My Mickey! I hope that you are eating birthday cake, playing music, and dancing- free from the constraints of ALS. No candle on a cake, but as always, the wish for a cure for ALS.  Love, Your Minnie

Gratitude For That Special Place In My Heart

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Thanksgiving has passed and I appreciate the opportunity to contemplate the things for which I’m grateful. I believe Walt Disney was right when he said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” Conveying and feeling gratitude is important to me. Family holidays like Thanksgiving can be difficult for me because I lost the family members who were most important to me- Ben, my mom, dad, grandma, and aunt Eleanor. After their losses, there were a couple of Thanksgivings when I chose to stay home by myself because I didn’t feel like I belonged anywhere. Also, I struggled when I returned home from any kind of social activity because I felt particularly lonely and alone. I needed time to work through the grief and accept that it’s okay to enjoy my holidays and any time with my fantastic chosen family of friends.

I recently spent about two weeks in England. I have been there many times and it is the destination where I feel most at home. I love the scale of the city, the history that lives on every street, the theater, the shopping, teatime, the way the British speak— their accent and extensive and thoughtful use of vocabulary. Now, I can add magnificent Christmas lights and decorations to the list! One of the reasons I chose to visit in November was to see the holiday displays and they did not disappoint. And, I even met some very adorable squirrels who were happy to take some almonds right from my hand! Maybe my Central Park buddies alerted them to my arrival!

Selfridges had Disney-themed windows that were spectacular! My photo doesn’t do them justice.
Fortnum & Mason looking festive. And a double-decker bus passing by!
At the entrance to Liberty. Magical place!

Many years ago, my mom joined me in London when I studied there during the summer. My mom was most excited about finding Paddington Bear statues and visiting the store. She loved that little bear, probably as much as Mickey Mouse. At that time, it was quite a trek from Paddington Station to the store. Now, the store is right in the station, along with a statue of Paddington. When my flight arrived at Heathrow Airport, I took the express train to Paddington Station. I immediately located the Paddington statue and asked someone to take my photo. I went to the Paddington store and recalled how Mommy wanted everything she saw. I still have several, if not all, the things she chose. And, because she truly was adorable, I remember how the storekeeper saw me taking her picture and brought a Paddington bear for Mommy to hold in the photo. I liked revisiting my memories with my mom especially because London was only ours.

London 1987. My mom could not wait to visit the Paddington store!
My first stop after arriving in London- Greeting Paddington at Paddington Station.

A new show just opened at the Savoy Theatre called Paddington: The Musical. I had low expectations, but I knew that it was something my mom would have wanted to do and we would have had a fun time, so I got a ticket. I even got a marmalade sandwich— the special snack at the theater— because I knew my mom would have gotten such a kick out of it. As luck would have it, the show was absolutely fantastic. Funny, sweet, touching, energetic- I wished my mom could have seen it and although I try not to get caught up in how cheated of time we were, it does sting, even after more than thirty years.

This time, I also met in person Emma and Robynn, two British women who are in my virtual picture book writing groups. How lovely that they took the time to come into London to spend time with me and what a delightful and fun time we had. We went to “The Paddington Experience,” which was an immersive experience where you join the Brown family through a series of activities. It’s cleverly designed and we jumped into the interactive fun, including a Conga line with the “train conductor.” My mom would have been completely in her element and I did shed a few tears along the way thinking of her. I’m grateful to have been able to share the experience with new friends and to give them a glimpse into my mom.

Meeting Paddington! My mom would have been ecstatic! The apple doesn’t fall far from the tree.

The most special part of being in England is visiting my longtime friends, Penny and Jeremy. I treasure the time I spend with them and appreciate that they always open their home and hearts to me. I have seen their babies grow up, now married and having babies of their own, and our relationships have blossomed. I feel fortunate and grateful to have all of them in my life.

My mom joined me on this holiday and although I missed her physical presence, I felt her nearby and was comforted by the time with her and our memories. I also liked the feeling that she was still along for my current journey.

I have had to make peace with the reality that my mom and the others have left this world, but I know that they travel everywhere with me in my heart. I am always grateful for heartwarming, if not bittersweet, memories. I like to think that being in a state of gratitude helps me to keep moving forward with an open heart, curiosity, and hope. I can revisit special places but I also create my own new memories. Maybe that’s what helped me to recognize that although at this time of year the air can feel heavy with the weight of their losses, my loved ones fill my heart and my world is rich with love, growth, and positivity. I’m grateful for all of it.

Not Feeling Like Snow White

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Snow White and the Seven Dwarfs
Snow White and the Seven Dwarfs
Walt Disney Productions

Less than a week ago, I wrote and posted my annual letter to Ben on the anniversary of his passing. This year was a milestone year- ten years. Since then, I have been feeling quite low. Ironically, I have been thinking of the song With A Smile and a Song from Walt Disney Productions Snow White and the Seven Dwarfs (the original).

There’s no use in grumbling
When the raindrops come tumbling
Remember, you’re the one
Who can fill the world with sunshine

In my caregiving days, I felt compelled to fill the world with sunshine for Ben and my dad. Indeed, my dark hair, extremely fair skin, love of animals, and high voice brought comparisons to Snow White, despite my lack of love for housekeeping.

For the last few days, I have not been able to find a smile and a song. I can’t seem to stop crying. It didn’t help that I was recovering from walking pneumonia, but I have found over the years that the days immediately after an anniversary date can hit me harder than the actual date. The closest to an explanation I can determine is that I focus so much on devising a way to honor these dates that I am filled with a kind of energy and satisfaction. After it passes, I flounder and am left with only the sadness and feeling of loss.

I mentioned in my last post that previously, I would travel home on the train on the date of Ben’s passing. This year, I traveled to my destination on that date and then walked around Cold Spring, NY. I realize that the time spent on the train just going home,and not figuring out how to spend the day, gave me the time I really needed to think about Ben. In fact, I often wrote my annual post on the train where all of my thoughts revolved around him. Although I wrote in my hotel room in the evening, the day was too eventful – distracting, actually- and not reflective enough. Now, the sadness has caught up with me.

I can’t seem to fill my own world with sunshine right now. And, that’s okay. The feelings are real. After all, despite bringing cheer, when there was a need for serious conversations, I did validate the fear and sorrow of Ben and my dad. It’s a tricky balance. In fact, one of the things that makes being a caregiver so challenging is countering the desire to be positive the need to be realistic and stay on your toes to solve problems without being paralyzed by emotions.

Grumpy at Walt Disney World’s Magic Kingdom, July 2014

I’m posting these feelings because I think it’s important to embrace all the ebbs and flows of emotions in caregiving and in grief. As Rafiki from The Lion King said, “The past can hurt. But the way I see it, you can either run from it or learn from it”. I have given myself permission to shed the tears and reflect on events. Unlike Snow White, I am not someone who can just turn the day around with a smile and a song. I learned that I need quiet time for reflection. Tears are okay. I know I’ll come around in my own time. Actually, taking the time to sort through my feelings and write this post has been helpful. And, knowing the ebbs and flows of grief, I know that there is truth to needing rain to get a rainbow. I guess there is a little Snow White in me, after all.

If you’re struggling, you might want to try to write your own feelings, too. Journaling can be very helpful.

We met Snow White during our last visit to Epcot, July 2014.
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