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ALS And International Kissing Day Without Kisses

ALS,Walt Disney World

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 fifth 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 will always be thought of as the date when everything changed. Over the years, I have learned to go with the flow on milestone dates, but this particular day has remained a terrible and vivid memory filled with tears. How ironic it is that today is International Kissing Day, because on this date Ben 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 smile and throw him a kiss- he couldn’t use his arms or hands to throw one back. In these days of COVID19, I relate to people lamenting not being able to hug because I missed Ben’s hugs so much as his ALS progressed.

It’s still morning and I have been replaying that day five years ago, when we woke up and Ben said he could not breathe. He was always nervous about breathing, so I stayed calm even as he followed my direction and blinked to indicate that he wanted me to call 911. I think of how time stood still as we waited for the ambulance, not knowing what would happen. I called and emailed his doctor and remembered that he had once told us that if we had to call for am ambulance, they would take us to whichever hospital they thought closer. Fortunately, EMS agreed to take us to Mount Sinai so we could be close to his doctor, who met us at the ER and, always kind and comforting, stayed with us till Ben was situated, emailing me throughout the day and coordinating with Ben’s ALS team. I remember that in the midst of the frenzy of an Emergency Room, it did not even occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I didn’t have time to think. I didn’t even have time to be in denial. I just went through motions. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a couple 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. We ended up in the ER for at least 36 hours waiting for a room, meeting with specialists, and in contact with his ALS team, all of which was overwhelming and exhausting. Ben slept a lot, and during that time I struggled with my emotions and guilt about the frustration that I had been feeling because I was so angry that, without discussing it with me, he let go his paid part-time caregiver and insisted that I be his 24/7 caregiver since I am a teacher and it was summer vacation. Now, summer had barely begun and here we were in a hospital. I shared all of this in a previous year’s post.

Five year increments always seem to be distinctive markers of time, so I can’t help but reflect on that. I wonder if five years should feel like more time has passed. This is my fifth time feeling the pain of this day and it is still debilitating. My only plan for the day is to await a delivery of shelving items to help me in my ongoing effort to organize my apartment. It’s already been a morning of tears, so it’s all for the best that I’m here and writing about my thoughts. Even organizing my apartment brings back memories of the chaos of this place when it was an obstacle course of clutter and medical supplies. I’ve significantly improved it- painted, re-carpeted, and added some new furniture, but the memories remain. I still think of my new dining table as the table that replaced Ben’s desk. I am listening to Ben’s favorite relaxation/new age music on his computer- something I could and will not replace because it was his lifeline. Today is not a day that I want to hear that I should make plans to distract myself, or should be proud of myself for carving out a new life for myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my heart is stuck in that day. Unfortunately, COVID19 has unearthed a lot of those difficult caregiving memories and has added another layer of sadness to this time.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled largely with the memories of Ben’s last summer. It’s an odd contrast to my being a teacher and eagerly awaiting summer break. I have, however, come to cherish my frequent summer walks in Central Park. I do look for signs that Ben is with me, and finding turtles there is an important sign that he is present and watching over me. I always bring some coins to toss into the fountain and make wishes (see my post on wishes), often shedding a few tears. Last week there was even a little turtle scampering through the fountain and I believe it was Ben sending a message that those wishes will come true! I must remind myself that summer memories also include the summer before his last one, when we had a most magical time at Walt Disney World. I try my Disney best to be optimistic even when I’m sad.

In my mind, July 6 may be International Kissing Day, but for me, it was the first day that I couldn’t kiss Ben. It was the beginning of the end. 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. I was there for Ben, he knew he could rely on me, and there was profound love and trust.

I find myself wondering if I will always struggle on this day. I have learned that today’s fog will lift. I do and will continue to have many days where I remember recall the days in the hospital that, despite the devastation and horrible decisions, were filled with love, music and even laughter. Today is just not one of those days.

Walt Disney World, 2002
The pre-ALS days.

Happy Anniversary to Lady and the Tramp and the Hunchback of Notre Dame: Thanks for Perspective on Memories and Living

Today is the 65rd anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song”; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)

A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” I am always drawn to quotes about memories because memories played such an important part of our lives when Ben was fighting his battle against ALS. Memories became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.

Dessert at Tony’s Town Square Restaurant- The Lady and the Tramp-themed restaurant at Walt Disney World. The Lady and the Tramp drawings were done with caramel- pretty fabulous!

We were so fortunate to be able to visit Walt Disney World four times after Ben’s ALS diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.

Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.

Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different  events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.

Walt Disney World 2002, the pre-ALS days. We didn’t kiss over spaghetti, but we did kiss Eeyore!

Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I immersed myself in those memories for some time after Ben died. I know that some people think that this blog is a way to stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward.

Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 24rd anniversary of the release of Disney’s The Hunchback of Notre Dame. I think about what the gargoyle, Laverne, told Quasimodo: “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” This quote holds an important message for me. I think that one of the most difficult things for me was when people told me it was time for me or time to take care of myself.  I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself. I preferred to put my energy into helping Ben relive and create new memories and, after he left this world, I took pride and comfort in thinking about those memories. The truth is that I will always love to visit with my memories of Ben, the good and bad times. But, my memories don’t have to end there. I can delve into new adventures that will become a part of my treasure trove of beautiful memories. I do not have to live vicariously through other people.

The Hunchback of Notre Dame
1996 Walt Disney Pictures

A sadness looms over my summers because they represent the most difficult times in Ben’s battle, and ultimately when he succumbed to ALS. However, I suppose I have come to accept Laverne’s advice, proactively making plans to do things I love: travel to see my friends, take part in some animal adventures, do some volunteer work, and continue to work on my blog while formulating new ways to reach out to caregivers. This summer, due to COVID19, is a particularly odd one because I can’t help but dwell on what life would have been like if Ben was here. Being home so much of the time reminds me of the time that I was home with Ben and how I would have been even more reluctant to go outside now, for fear of bringing home any germs.

Although sometimes I do feel like more of a spectator in life and I get caught in fantasies of what I think I would like my life to look like without knowing how to proceed, I don’t want my life to go by without me. I don’t think that would even do justice to the love and belief in me that Ben and my dad had. I probably spend too much time with my memories. But, I do have those fantasies and dreams, which is a good indicator that I am invested in my future. I just have to find my way. I’d prefer not to be alone but maybe it won’t always be that way. It helps me to  find peace in the knowledge that Ben’s spirit will always accompany me as I follow my life’s paths, make some dreams come true and make new memories.

My photo collage calendar filled with wonderful memories and new events that will bring new memories. where Ben will be present in my heart

This Daddy’s Girl’s Father’s Day Is All About Memories

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 did not really bring me down. After all, I already miss him. This year, without much distraction, seeing all of the holiday posts makes me a little more sad. Once again, I am hit with the reality that the people 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. But, 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 today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney visits with Ben, he beamed because he said he loved to hear me laugh and happy.

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.

My dad and I spoke several times a day. He even called my cats! He was a very good Grampa to my first cat, Tiffany, and then, to Disney, and he spoiled them just as he spoiled our dogs. I knew that when I went out, I would come home to a message on my answering machine with him calling my cat to say that it was a grave injustice that Mommy left her alone. They even got packages of treats and toys, addressed just to them! Even six years later, I miss that. I tell Tinker Bell about her Grampa and that he loves her from heaven. With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. When my aunt, his sister, asks me what Daddy would say about the state of the world, we agree that there would have been many phone calls and there would have been a lot of yelling. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through- so I’m grateful that he’s not dealing with it, but I miss the comfort of his explanations. I did trust his judgment on world events. I certainly can’t trust our current administration. 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!

I’ve been looking through old photographs because they do bring me joy despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, makes me smile. Daddy had the best giggle, which was kind of funny for a USMC!

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

Today, I will try to remember that Daddy never wanted me to be sad. 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. Since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. I can’t even imagine his frenzy over the coronavirus. I still can’t shake the thoughts of how I would have managed caring for him and for Ben if they were here.

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

When Ben was ill, despite fighting cancer, my dad never failed to think of how he could help Ben. I think that on a certain level, he felt connected to Ben because they were both facing death. But, the gadgets that my dad found to make help Ben with dexterity were so genuinely appreciated. I was always surprised to find that Ben called my dad to check on him and to chat, but my dad became Ben’s dad, too, and that, in itself, is a special memory. Daddy called Ben a gentle soul- I think they were both gentle souls. I wish I had a photo of the three of us.

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. 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!

 

On Mulan’s Anniversary- Reflections on Caregiving and Who I Am Inside

Reflection
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga

Mulan (1998)  Walt Disney Feature Animation

Today is the anniversary of the release of Mulan. It was actually the first Disney film Ben and I saw together when we began dating. It is hard to believe it was 22 years ago. At that time, Ben was not quite the Disney fanatic that I was, but he wanted to impress me so we made frequent visits to the Disney Store and he took me to see this film on opening day in what became our tradition of opening day viewings of Disney and Pixar films. As it turned out, Ben loved this film and he was very happy to find Mulan ornaments for our Christmas tree. He particularly loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family and I am struggling more within myself.

Somehow I cannot hide
Who I am, though I’ve tried.
When will my reflection show who I am, inside?

grief,ALS,Disney,Christmas

Ben loved Mulan and Buzz Lightyear!

I’ve written a lot about feeling like I was, and still am, floundering, because when I lost my dad and Ben, I also lost my role as a caregiver. Caregiving consumed my life. I did what I was expected to do but also what I felt in my heart was the right thing to do. Despite the emotional and physical stress, it was the most important, meaningful and loving work I have ever done. I learned that at my core I am an attentive and devoted caregiver, whether to my dad, Ben or my students. Caregiving also revealed to me a strength that I never would have believed I possess, and that my often emotional demeanor would never have conveyed. Once that role was removed, I lost myself and my reflection was blurred.

Because caregiving was so much of who I’ve come to be, it is still difficult for me when I realize that people I meet now do not know the story of Ben and my dad. I am no longer known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are aspects of how I see myself, even though those actual days are done. Presenting myself apart from Ben, as a person on my own, seems incomplete, and almost disrespectful. I feel self-conscious when I mention Ben and someone asks how long he’s been gone. I sometimes become apologetic that I realize he’s been gone almost five years. I keep reminding myself that Ben is still a part of everything that I do and we will always be connected. I know that I have to find my own way now.

Now, when I look at myself, I see much of the former, more eccentric and whimsical Abby, though I was changed by seeing my dad and Ben face death and by having the responsibility of caregiving. I still do struggle with compartmentalizing my caregiving experiences and losses. The truth is that I see my caregiving qualities as positive parts of myself.  It is a rare  accomplishment to feel proud of myself, and caregiving did that for me, though it took a long time after the fact for me to realize it.  My struggle has been finding a balance of being true to Ben and my dad, and true to myself, while living in the present.  I want the Abby I am now to reflect all of those experiences without remaining immersed in only memories.

I have managed to integrate my caregiving into volunteer work, and even managed to extend it into my school life. This year, I started a club that I intended to reach kids who were caregivers. I saw that many kids were struggling because they were caring for an ill parent or relative or caring for siblings. They had no time for themselves and had difficulty focusing on schoolwork. I asked guidance counselors to let kids know about my club and leave it to them to reach out to me, because I did not want anyone to feel that their privacy was invaded. As it turned out, I have a club of wonderfully caring kids who want to volunteer and want to create activities to care for our school community. It has been a great joy for me to see them blossom and build their confidence. They have created virtual workshops for the school community that have been quite delightful and valuable, and the workshops have provided a welcome opportunity for the students to connect at a time when they feel so isolated. It’s not exactly what I intended, but it’s been such a positive experience to know that indirectly, I am contributing to the students’ development of social and caring skills that would put them in a good position as caregivers. I’m not exactly sure where it’s going, or where I’m going, but I feel like I am doing what I was meant to do. This is a positive way to reflect my caregiving experience.

I will continue to explore ways to reach out to the caregiving community and to of young caregivers. In this new phase of my life, my “new” and maybe somewhat “improved” self is exploring the possibilities for self-exploration and reinvention that will hopefully allow me to make a difference in the lives of others and maintain my tie to Ben, my dad and caregiving. I would love to know that they are proud of me and happy that they are continuing to inspire me. I know that inside myself, I hold all of my love and experiences.

All of our experiences help us grow and evolve. I will always see the people I’ve cared for, loved and lost in my reflection and I am proud and comforted that this will always keep their spirits alive and close. I hope that what others see in me honors them and our love and does justice to all of us.

In the place where I took a photo with Ben, this time on my own, but strong!

 

Happy Anniversary to “The Incredibles 2”- Elevating The Superpowers of Caregivers

ALS, The Incredibles,Caregiving,Caregivers,Walt Disney World

In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.

Today is the second anniversary of the release of The Incredibles 2.  I reread my original post about the film, most of which is re-posted here. I like to reflect on where I was and where I am with regard to dealing with his death and my life. I can’t help but recall that when the sequel opened, it was particularly bittersweet to see it without Ben because The Incredibles was one of his favorite films, but it was also important to me to maintain our tradition and see it on opening day. I do recall that although there are times when I literally feel Ben beside me, which I know some people find strange, at this film I didn’t feel his presence. I did, therefore, profoundly feel his absence. I was angry that he did not have the chance to see this movie. I don’t usually feel angry, though I do often feel frustrated that he was cheated of so much of life. I felt that deeply when I returned to Walt Disney World last fall, when I experienced the activities and events that we loved so much and will never be quite the same without him. There are certainly more significant life moments than a film that Ben has missed and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.

This blog is a clear reflection of the way I look to each Disney film for enlightenment, hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love.The wisdom seems even more powerful in the midst of the many issues that we are facing as a society. Though it may be a generalization, I have to agree with Agent Dicker when he said, “Politicians don’t understand people who do good things. That makes them nervous.“

Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible, Done properly, parenting is a heroic act. Done properly.”  I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all.  Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving. It is, indeed, a super power, though I never thought so when I was a caregiver.

As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.

It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.” As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!

In the film, we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.

Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.

Mr. Incredible at Walt Disney World’s parade, 2014.

Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. Maybe, in our own ways, we were both super heroes, albeit without the cute costumes.

I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.

ALS, Caregiving, The Incredibles, Disney, Pixar, Caregiving, Grief

Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!