Today, July 8, would be my mom’s birthday. Although, I have written quite a bit about my mom and how close we are, I like to write an annual birthday tribute to her.
When I think about the time, nearly four years ago, being in the hospital with Ben on her birthday, and wondering what was going to happen to him while missing her, I still feel overwhelmed by the fact that I have lost the people I loved the most in the world. I do feel so fortunate to have known and shown so much love in my life. And, I still feel much love. But, my life has changed dramatically in many ways, and sometimes it can feel terribly lonely.
We were always Mickey Mouse fans!
My mom is the person who introduced me to Mickey Mouse and instilled in me an eternally child-like wonder. When we were in London together, I remembered how excited my mom was to go to Paddington Station and the Paddington store in Paddington. The woman in the shop was so taken by my mom’s exuberance over the little bear and being in the shop- it was hard not to get caught up in my mom’s child-like delight- that she excitedly handed my mom a Paddington Bear doll to hold while I took her picture. So, it wasn’t all Disney, but Mommy’s first true love was Mickey.
London 1987. My mom could not wait to visit the Paddington store!
I look at our old photographs and remember the laughter. I am proud to have inherited her ability to celebrate her inner child, her youthful demeanor and her joyful spirit. Sometimes people are surprised that she passed away more than 25 years ago, because I talk about her so frequently and vividly. She is always dear to my heart and so much a part of who I am, but also, of the person I aspire to be.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.
My mom was my example of the consummate caregiver, perhaps being too selfless. She was so generous and kind, always smiling as she balanced the needs of everyone around her. She tended to my grandmother, who lived with us, and also took care of my great-aunt in the nearby nursing home, and my great-uncle who insisted on living alone but needed much assistance.
I also inherited her klutziness, but, with that, I also have her ability to laugh at herself.
On her birthday, I will continue my tradition of watching The Little Mermaid, because it was one of the last films we watched together. I love to remember how much we laughed when we watched it together, particularly when we looked at my grandma, who just did not understand our amusement. I wish that I had gotten a chance to visit Walt Disney World with my mom, but she has always been present when I have been there. It always touched my heart that Ben was so aware and acknowledging of her when we were there.
I proudly say like mother, like daughter!
Happy Birthday, Mommy! I love and miss you every single day.
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 fourth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center. For me, this is simply the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. I woke up this morning, as I have each year, thinking about how I woke up on this date four 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 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 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.
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 not shared anything with anyone today, keeping my feelings and memories to myself. 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, 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 song title So This is Love, from Disney’s original, animated Cinderella. I have been listening to a lot of our favorite Disney love song albums and remembering how he loved to listen to them. Music was so important to Ben, so it feels right to do this. One Dance remains a song that brings tears to my eyes, and yet, I still like to listen to it because it captures so perfectly how I was feeling during those days in the hospital. Click here to read about it.
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. 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. I try my Disney best to be optimistic even when I’m sad.
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.
I find myself wondering if I will always struggle on this day, though I do notice that the intense and debilitating grief has shifted. I have learned that today’s fog will lift, and that I will also have many days where I remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Today is just not one of those days.
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 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.
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.
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
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.