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July 6 – Not A Traditional International Kissing Day

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

Once again, I am faced with the conflicting emotions of joy that school is over for the year, and sadness over the memories of the summer of 2015, Ben’s last summer. We spent it in the hospital, where he ultimately succumbed to ALS.  Today, July 6, marks the third anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  As I write this post, I am cuddled up with Ben’s favorite Disney throw, with Sully and Mike from Monster’s, Inc and personalized with his name. I covered myself with it last night, too. On these kinds of anniversaries, I refer back to my blog post from last year year. I can’t say that much has changed- it remains a somber day when I prefer to be by myself with my thoughts and our photos, and maybe watching Monsters, Inc., which always gave him such delight.

For me, this is simply the date when everything changed. I woke up this morning thinking about how I woke up on this date three 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 the 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 despite the frenzy of an Emergency Room, it did not 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 emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards family who had lots of questions, 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 last year’s post.

I did not make any plans for today, not knowing how I would feel, but allowing myself to be okay with anything I chose to do. I have learned that I cannot predetermine what’s right for me in these circumstances. I don’t want to hear that I should keep living, or I should make plans to distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my head is swirling and I just want to think about Ben, and that day.  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 a lot of 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 lyrics of So This is Love, from the original, animated Cinderella.

Yesterday, I went for a walk in Central Park. I love walks through the Park, despite the heat, because I have my music in my ears and I can let my thoughts flow. I have my route, and I headed for Belvedere Castle, from which you can look down and see lots of turtles. Ben and I loved turtles and a turtle was his icon in the original messaging program that we used. I was shaken to find that the Castle was under scaffolding and closed to visitors. It was so important for me to see those turtles yesterday because of today’s anniversary.  Not knowing what to do, I proceeded on my walk and was lured to a little gazebo that was right on the water. I had never walked there before but I was drawn to it. There I saw several little turtles! I do look for signs that Ben is with me, and this was my sign. I took many pictures and just watched them for a while, talking to Ben in my head and knowing that we would have been so happy to have discovered them, at the same time feeling that he was with me. Further on in my walk, I found the fountain that I never seem to be able to find when I’m looking for it. I tossed some coins and made wishes (see my post on wishes), shedding a few tears. I try my Disney best to be optimistic even when I’m sad. Sure enough, when I walked to the water by the fountain, I saw more turtles and even some fishies. I have never seen so many turtles at the Park, and I believe that they carried the message that Ben is watching over me and that even as I keep moving forward, he will maintain a presence.

This date may always be a difficult day. In my mind, it will always be thought of as the day that everything changed. 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.

I do notice that the intense and debilitating grief has shifted. I know that today’s fog will lift, and that I will also remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Just not today.

 

Independence Day- On ALS and Independence

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.

I also can’t help but think of independence as it relates to ALS.

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 the 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.

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 could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of 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. Only now, nearly three years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

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’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 practical way, I contribute, through donations and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

ALS,Grief

I always picture Ben like this, in his chair at his desk.

Happy and Hopeful Independence Day.

Walt Disney World
July 2014

 

 

These Quotes From “The Lion King” Gave Perspective On Caregiving and Grief

The pre-ALS days-Christmas 2007.

Since last week marked the 24th anniversary of the release of The Lion King, of course, I had to watch the film once again. I have always adored Simba but had a hard time with how cruel Scar was and how he actually killed his own brother. Still, the animation is incredible and was yet another stellar achievement by the Disney team. As with so many Disney films, I see different insights and am touched in many ways that reflect my own experiences with caregiving and grief. I’ve written about being “surrounded by idiots” and how it has not always been “hakuna matata.” Now, I’d like to share some of the quotes from the film that resonate with me as a daughter, a wife, a caregiver, and a person who has experienced grief. I’m including photos that Ben and I took at Walt Disney World’s Animal Kingdom.

“Life’s not fair, is it?”- Scar

Scar speaks the simple truth. It’s not fair that our loved ones become ill, suffer and leave us. It’s not fair that caregiving is so difficult. It’s not fair that things like insurance and finances have to be concerns when we are already coping with the physical and emotional devastation of terminal illness. It’s not fair that we don’t always have family that is helpful or caring. But, as loving people, although we may lament and vent about the difficulties we face, we also look for share love and positive influences.

Ben told me that he never asked the question, “why me?” when he was diagnosed with ALS. They were the cards he was dealt. So, I never let myself ask that question either. It wasn’t fair, but we tried to make life as good as we could for as long as we could.

We saw Simba! 2007

“I’m only brave when I have to be.”- Mufasa

I have often written about not feeling brave. Though not from this film, my favorite quote, and the one to which I relate best, is actually from Christopher Robin: “You are braver than you believe, stronger than you seem and smarter than you think.” The fact is that my dad, Ben and I were brave when we needed to be.  It was terrifying for my dad each time he had to go to the emergency room, or to find out that his cancer had spread a bit more. It was terrifying for Ben as he lost his abilities one by one. They had to be brave and I had to be in control as their caregiver and advocate. Also, as their caregiver, and as a wife and daughter, it was excruciating to have conversations with my dad and with Ben about their right to decide how to live and die. I did my best to put on a brave face and then, I cried when I was by myself. I can only remember two occasions when I cried in front of Ben about what was happening to him and, in those moments, he bravely comforted me. At those times, I felt guilty, because, in my mind, it was my responsibility to comfort him and alleviate his worry. We were vulnerable and frightened, but we showed strength for each other when we needed to. It was a powerful and important lesson.

“Nobody messes with your dad.” – Mufasa

I was always a Daddy’s girl, but also a Mommy’s girl and a Grandma’s girl. I know that I was my dad’s whole world, and I was constantly reminded of that when he was in the hospital and then the hospice. It was difficult to see him struggle with cancer, particularly because he had a very defeatist and negative attitude. I think it’s hard for any child to become the caregiver for a parent and, essentially, take on the role of parent. Growing up, I firmly believed that no one would ever mess with my dad. He was a Marine! Unfortunately, cancer messed with him, and ultimately won, and it was heart-wrenching to watch. But, in my memories, he will always be the Daddy who protected and loved me with all his heart. Nobody or nothing will ever mess with that.

Disney’s Animal Kingdom- 2001. Ben was psyched to meet Baloo!

“Sometimes bad things happen and there’s nothing you can do about it.”- Simba

Another truth. We could not change the diagnoses or wish away disease.  We could only attempt to demonstrate integrity and grace while coping with the illnesses and their impact on our lives.

“You said you’d always be there for me, but you’re not.” – Simba

I have definitely thought this. In the end, just like Simba, I realize that Ben and my dad are still here, in my heart, and that our relationships continue, although in a different way. Sometimes that’s enough, but not always.

2007- The Christmas tree decorations at the Animal Kingdom.

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

This thought is a comfort to me and I can say that, in my experience, it has been true. I still turn to my loved ones for guidance and wisdom. Sometimes, it’s memories of conversations we had and ideas that they shared that help me to move forward. Sometimes it’s just that I know with all my heart that my loved ones are watching over me.

Ben was doing his best Ricky Ricardo impression. 2007

“He lives in you.”- Rafiki, talking to Simba about Mufasa

 “Oh yes, the past can hurt. But from the way I see it, you can either run from it, or learn from it.” – Rafiki

“Remember.”- Mufasa

Without a doubt, I see within myself reflections of my mom, dad, grandma and Ben. The love we shared, who they were and my experiences with them- particularly as a caregiver for my dad and Ben- have shaped me. Caregiving was challenging and at times downright ugly, but I don’t want to run away from or pack away that time, because what I learned from those experiences and memories is profoundly meaningful and indescribably loving. Now, I want to make my loved ones proud and I want them to know through my actions that they are remembered and loved in every step I take.

 

“The Incredibles 2” – Insights Into Super Powers Of Caregiving

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.

With every Disney film release come thoughts of Ben, but a film like The Incredibles 2 is particularly bittersweet because of Ben’s love of the original film. Mr. Incredible was one of his top three Disney buddies, along with Buzz Lightyear and Sully. Because of this, and since it was our tradition, t was especially important to me to see the film on opening day.

Of course, I had my little cry in the theater as the film began. There are times when I literally feel Ben beside me, which I know some people find strange, but at this film I didn’t feel his presence. I did, however, 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. There are certainly more profound life moments that he is missing 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. There were audible expressions of agreement when Dicker 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.

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. I guess 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!

What Lady and the Tramp Knew About Making Memories

Today is the 63rd 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.” Memories played such an important part of our lives when Ben was fighting his battle against ALS. They have continued to play a big part of my life in and coming out of the thickest fog of grief. But, as Lady had to be coaxed by Tramp, I had to coax myself into delving into new adventures that will become a part of my treasure trove of beautiful memories.

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 his 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 hid 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.

It took me quite a while to accept and embrace that it was time to create my own new memories. At first, I was unable to figure out how to begin to reshape my life without Ben and with an emphasis on myself. It actually put me in tears when people told me it was time for me or time to take care of myself.  I went through motions, tried to pick up pieces of my life, but I was consumed with grief and confused about what my life should be. 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.

Last summer, I fought the floundering feeling of doing things on my own and for myself, but I created delightful new memories with great friends. Ben was a huge part of everything I did and I saw things through his eyes, keeping him very close to all of my experiences. I was so excited to go to the Bean in Chicago, because Ben’s nickname was Mr. Bean. Maybe I talked about him too much, but, even now, he remains so present in my life.

A couple of months ago, I started thinking proactively about what I wanted to do during the summer. After all, I’m a teacher so I have lots of time. I find that I have faced this summer with less trepidation. It’s not yet easy, and maybe it will never be easy, but, in a shout out to The Hunchback of Notre Dame, which is also celebrating the anniversary of its release today, I will quote Quasimodo, who said, “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” I am looking forward to seeing people I love, especially visiting my friend and her family again in Chicago- I have my Cubs jersey all ready to go! And, I am making a dream come true by going to the Georgia Aquarium to have encounters with otters and penguins. I am obsessed with otters and Ben and I adored penguins. The winter of his last birthday, I had arranged with a fairly local aquarium for us to meet penguins, but that winter was brutal and he was afraid to travel. I do feel a little guilty about enjoying this experience without him, and yet, I feel like I am doing it for us. I know he will be with me, and he will still have a part in these new memories.