ALS

Yesterday- Memories, Grief, And Looking Towards Tomorrow

On Friday, I saw the film Yesterday. It’s not a Disney film, but I see those, too! It’s a fun film about a glitch in time (the one everyone worried about, which never occurred, at the stroke of the year 2000) in which all memory disappeared of the existence of The Beatles. It’s hard to imagine. I saw the film largely because of Ben’s love of The Beatles. As I frequently do, I wanted to see it through his eyes. When I attend Disney films, I often sharply feel Ben’s absence, and sometimes I do feel his presence, but this time I wanted to be his eyes, enjoying it as he would. It had emotional moments for me, and, even without the obvious title, made me think about “yesterday,” and the concept of time as I’ve journeyed through caregiving, watching Ben battle ALS, coping with the depths of grief and the adjustment to co-existing with it.

If I travel back enough yesterdays, I remember that the first song I ever danced to with Ben was The Beatles’ Twist and Shout. We met at work and at a gala, before we were actually dating, when that song came on, he grabbed my hand and took me to the dance floor. I learned how much of a fan he was of The Beatles and developed more of an appreciation of them. Now, I listen to the albums more often and with more love. During the yesterdays of Ben’s ALS struggle, when we were fortunate to travel to Walt Disney World several times, at Epcot’s England pavilion, I loved watching Ben watch and play the air guitar along with the live bands as they performed music of The Beatles. During the yesterdays of Ben’s time in the hospital, and even on his very last day on this earth, musicians visited him to play Disney music and some of Ben’s favorite Beatles songs, including his favorite, In My Life. On his first day in the hospice unit, Ben had a visit from one of the very kind residents who treated him early on in the hospital, before his tracheostomy and feeding tube. They spoke for quite a while about music and which was their favorite Beatles album. It wasn’t easy for Ben to communicate, but the resident did a great job reading Ben’s lips and I was there to help translate. This resident did not have to visit, but he was a lovely, compassionate soul, and he had to deal with one of Ben’s crises on his very first day as a resident. I know that he will be a wonderful, caring doctor. A lot of yesterdays. A lot of memories. A lot of sadness. But, a lot of love and even laughter in the darker times.

Walt Disney World, 2011.
Ben’ in one of his many Beatles tshirts.

The lyrics of Yesterday start with

Yesterday
All my troubles seemed so far away
Now it looks as though they’re here to stay
Oh, I believe in yesterday

In the film Yesterday, some of the past is erased. It’s a flawed plot, but it did make me think. Imagine if The Beatles had not become The Beatles. Imagine if John Lennon had not been shot. And, more to the point, imagine if Ben had never been diagnosed with ALS. Imagine if there was no ALS? How would life play out? Thoughts like that do at times drift through my mind. It happens often when I see elderly couples walking hand-in-hand, because Ben used to always comment that we would be a couple like that.

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

The concept of time is fuzzy when I think back to my days taking care of my dad and Ben. I measure time by significant events in the progressions of their disease and then “firsts” without them and, of course, milestone dates like birthdays and anniversaries. February is a month I dread because it was my dad’s birthday, Ben’s birthday, the month when my dad died and, most recently, the month that my cat Disney died. Summer is the marker of when I lost Ben. The start of each school year reminds me of the insanity I felt when I returned to school a couple of weeks after Ben died, feeling the drastic change of not having the same caregiving responsibilities, which only magnified the feelings of loss and the accompanying grief. They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. Sometimes my experiences feel like yesterday, sometimes they feel like further in the past.

Indeed, before Ben’s diagnosis, it’s not that life was perfect- it never is- for one thing- my dad had cancer, but an ALS diagnosis sent us into a tailspin. There was always the wish of going back to yesterday.

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

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 at my yesterdays and say that after nearly four years, I still feel the pain of losing Ben. Pain has not turned to memory, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. There has been a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also defining and diving into my new “present.” Pain, sadness, joy, anger- a bevy of feelings and emotions related to my yesterdays- are all part of cherished memories and I see that they continue to shape me and lead me towards a bright tomorrow. I even made sure that I visited Abbey Road when I returned to London in 2016- it was a way to honor Ben, have him present with me, and see London, one of my very favorite places but one I never saw with Ben, through his eyes. Yes, I wish I could erase ALS, but this was our unique story. It did not have a Disney happy ending, but it did have love and even some pixie dust. I will carry in my heart all of those yesterdays as I face today and tomorrow.

Feeling like a Beatle, as Ben would have wanted to do.

On July 4- Thoughts of Independence, ALS and Aging

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 and to aging.

My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

Ben dealt with a loss of independence as ALS stripped more and more of his abilities. 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. 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 four 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, Walt Disney World

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, volunteering 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.

Happy and Hopeful Independence Day.

Disney Pixar “Up” Helps When Grief Has Me Down

Up Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

Today was the last day of school. I eagerly anticipate this day throughout the entire school year. Today, however, I felt terribly sad and lonely. This is the fourth summer that I have approached since Ben died. I guess that I may never enter summer without remembering that summers were difficult for me when my dad and Ben were ill because I juggled caring for both of them. Just as I didn’t get excited about weekends, summer didn’t really represent any kind of freedom or fun, other than being away from the school building. Ben died in August 2015, having spent the summer in the hospital.  I still feel twinges of guilt and sadness that I was so angry that, without talking to me first, Ben made the decision to let go his home health aide because he said that I could do everything since I wasn’t teaching. It ended up being  only a week before he ended up in respiratory crisis and in the hospital. I don’t like remembering the anger and resentment, though it was an honest part of our experience with ALS. I also remember the days and nights spent at his side in the hospital, when there were terrifying, devastating, frustrating and also many loving moments.

I relate so much to this scene from Up. I like to reminisce about my time with Ben. But, there are times like today, when I want to share the celebration of the end of a school year with him. Like Ellie’s, Ben’s chair is empty. He’s not at home. I’ve gotten better at planning my own adventures, but on days like this I am too keenly aware of being alone.

Every summer has come with melancholy and anxiety, and a regression in grief, but this seems to be the first time I have had a very tearful last day of school. I don’t really know why. I guess I will always be thrown by the unexpected tears and clinging sadness and loneliness. I don’t fight the feelings. I acknowledge them and let myself have the moments. I know that the profound loneliness and loss that I am feeling will fade and I will get back up to speed. I’ll use this time to spiritually commune with Ben, try to work through that difficult summer, and try to balance his  absence and presence. Maybe part of my sadness is the change of routine. With school, Ben was part of my structure- I listened to my “Ben playlist” on the way to school every day. I have not firmly organized my next few days. That was probably a mistake. Without structure, I might be able to distract myself, but I might flounder. I’ll have to see how it goes. I’ll try to remind myself that I am going to have new adventures this summer and he will still be with me, just in a different way. That will never be enough, but it is a lot.

Ben and I at Walt Disney World, July 2014. A good summer memory.

Celebrating The Anniversary Of “The Lion King” With Important Quotes That Give Perspective On Caregiving and Grief

The pre-ALS days-Christmas 2007.

Today is the 25th anniversary of the release of The Lion King. 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.

 

Lady And The Tramp and The Hunchback of Notre Dame- Lessons on Cherishing Memories and Living Life

Toay is the 64rd 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 23rd 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 proactively made 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.

Although sometimes I do prefer to be a spectator in life and to get caught in fantasies of what I think I would like my life to look like, I don’t want my life to go by without me. 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