I want to wish a Happy Passover to all who celebrate the holiday. Holidays became melancholy when Ben and my dad were ill and I was caregiving. Looming over the days was the thought of whether they would be our last holidays together. I am not someone with deep religious faith, so I always felt a bit out of place on holidays like Passover. When you are a caregiver for someone who cannot participate in festivities, celebrating may seem like too much of a reach, and it may feel downright inappropriate to use the word “celebrate” with its connection to joyful indulgence. But, holidays may serve as an important time for reflection on our faith and indeed, a thoughtful celebration of our memories.
Faith is important, however you define it. I have written about faith and how it has helped me to get through caregiving and grief. Faith is that intangible belief that things will be okay that allows us to have some optimism. Optimism does not necessarily mean the expectation of a happily ever after in the traditional sense. It may mean that we need to look at life day by day, moment by moment, as opposed to the whole scope of a situation, which can be overwhelming. As a caregiver, each moment that you engage in your loving and giving work can be filled with the faith and optimism that you can help your loved one, make them more comfortable, advocate for them. Despite the sadness, I have found this to be a beautiful and somehow sacred bond to be honored and treasured.
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 would be the 18th anniversary of my first date with Ben. I think I’ll always mark these events in my heart. And, I think that’s ok. In fact, I think it’s good. I remember when we wore our “Happily Ever After” buttons at Walt Disney World, even after his ALS diagnosis. It isn’t always easy to remember pre-ALS days, but days like today bring me back to who we really were and the Disney-like romantic times that we were so fortunate to share. I like to believe that he is now watching over me now as I make new milestones, knowing that I always keep him close.
When Ben proposed to me, he asked me to be his Minnie. So, Happy Anniversary, My Mickey. I miss and love you.
Lyrics from the song “Colors of the Wind” from the Disney film, Pocahontas” Lyrics by Stephen Schwartz and Composer Alan Menken
These lyrics are from the song Colors of the Wind from Pocahontas. In the context of the film, the song relates to people learning to accept and open their minds to people of other cultures and races. I found myself thinking of the many people we may judge without really knowing them, their stories, and what it is like to be in their lives. I think about the way people responded to the way Ben chose to live and die with ALS. It is easy to have opinions, and it’s fine to have them. I have them, too. We were fortunate to have many people close to us who put aside their opinions to create a solid support network. But, there is a line that is crossed when opinions become harsh judgments that are made without full knowledge of a situation, and, more importantly, without an attempt to see a situation through a different lens and get a glimpse at what it is to “walk the footsteps” of another.
When Ben was first diagnosed, suggestions were offered by his ALS team, who had followed many people on the sad and excruciating journey of this disease. There were opinions from our friends and family. I had my own thoughts. But, Ben had to choose his own path. No one could really know exactly how he felt about facing the loss of his abilities and, in essence, his freedom, as he faced death. I lived with him every single day and talked to him about these things, trying to walk his footsteps, and I still could not truly envision what it was like to be him. Still, there was a lot of “what you should do” and “what you have to do” from people who had much to say, yet did not ask Ben (or me) questions that would have given them insight into his experience and allowed them to acknowledge and comfort him, rather than simply judge and direct him.
Shortly after his diagnosis, Ben told me that he would understand if I wanted to leave him, if I could not handle what was happening to him and if I wanted to have a different life. From his perspective, he loved me and wanted the best for me, at the same time that he feared and wanted to prepare for the possibility that I might leave him. Indeed, some people told me that I should leave him. To walk in my shoes would mean that you perceived my overwhelming fear, anger and sadness but knew that I would never leave this man whom I loved and who needed me. And, to walk in my shoes would mean that you would realize that even when he was harsh and unkind, I would either defend it because of his illness, or believe him and think that I must not be a very good caregiver, or feel helpless because he was a dying man and I was devoted to him.
There were many times throughout Ben’s illness that I would have liked to tell people – strangers and those close to us – to try to walk in our footsteps. At Walt Disney World, when Ben did not have visible signs of disability in the early stages of ALS, some guests treated him as if he was simply lazy by using a scooter, and were clearly annoyed when loading the scooter delayed a bus and when it took up seating space. Instead of being defensive and angry, we were anxious and unnecessarily apologetic for the delays. That said, there were many people who also offered assistance if they saw me helping him to stand or transfer from the wheelchair, and they were kind and good humored with Ben. Try walking in the footsteps of someone who does not have the freedom to easily step on and off a bus and has to awkwardly and anxiously enter and secure a wheelchair while being watched impatiently by other riders. Imagine knowing that this is only the first of the abilities that you will lose and that this may be the last time you will ever be able to travel. We never know the big picture behind what we are seeing, so it is important to suspend snap judgments. Ironically, though there are often controversies regarding visitors to Walt Disney World who illegitimately request disability passes to get to the front of the lines, Ben never wanted special treatment or to take advantage of having a special pass for the attractions. I must also add that the Disney cast members on the grounds and transportation were always fantastic.
There were many instances in which people bypassed Ben and only addressed me. When his speech became impaired, he joked that if they heard him speak they assumed he was somehow mentally challenged, and, although it did bother us, I was glad that he had a good sense of humor. However, I was quick to involve Ben in conversations, because I wanted people to know that he was fully capable of communicating and understanding, even if he needed my help. Then, some people realized that they could engage with Ben. Think about how it must feel to be ignored when you are vibrant, able and wanting to be a part of a world that is becoming increasingly distant. Just acknowledging someone’s presence with just a smile can lift a person’s spirits. It certainly lifted mine to see him respected and happy. Compassion goes a long way.
Seeing things through another’s perspective is not always easy, especially when you are dealing with someone who has a terminal illness, like ALS. Among my biggest frustrations was that some of the people with the strongest opinions, arguments and accusations were also the people who were not actively or consistently involved in Ben’s care. They promised to visit and did not. They did not try to gain a clear picture of his medical and emotional situation and dilemmas or ask how they could help, but they were vocal with their criticism, even if completely unfounded. Instead of walking in his footsteps, they stepped on his feet and tripped me up with the unnecessary drama they created. It is imperative to be honest with yourself about the role you have had in someone’s care and life, and to recognize when to put aside your own needs and agendas, in order to watch and listen, and to “learn things you never knew you never knew.” With that insight and knowledge, you are more able to play a meaningful part in someone else’s journey.
In Ben’s fifth year with the disease, he made the choice to proceed with plans to get a feeding tube but those plans were interrupted by an urgent respiratory crisis that landed us in the emergency room. Then, admitted to the hospital with a biPAP mask and being fed intravenously, he had to decide for sure if he wanted a feeding tube and a tracheostomy. It took him more than two weeks to make that decision. I held his hand, I tried to answer his questions and to get a sense of what he was feeling, but I could not tell him what to do. I was worried about what his quality of life would be in a skilled nursing facility, which was where he would have to go with a tracheostomy. However, talking to him helped me to understand that Ben was focused on living and the things that he would be able to do. I could not begin to imagine all he was experiencing, but talking to him helped me to see his viewpoint and gain insight into his thoughts. I embraced his beliefs and supported him.
Ben did decide to get the feeding tube and tracheostomy, but things did not go smoothly in the hospital. He quickly developed an infection and then pneumonia. He was miserable. After a few weeks, he made the decision to go to the hospice unit of the hospital and to be removed from the ventilator, which was his life support.
Life and death decisions can be debated based on a range of convictions, from emotional to clinical to religious. Ben navigated his journey with ALS in a way that was right for him. I respected that and I admired his bravery. I had to see his situation through his eyes, and although I did agree with him, I understood that agreement with him was not the issue. I was there for him. Whether you are a caregiver, friend, family member or even a patient, it is so important to try to walk someone else’s footsteps. Maybe I did not handle being a caregiver the way some people thought I should and maybe I did. Maybe Ben did not navigate his life with ALS the way some people thought he should, and maybe he did. Keeping an open mind, even if we do not agree, helps us to “paint with all the colors of the wind” and support each other with a more positive, meaningful, loving and helpful connection.
Ben liked scooting through the princess tower at the Disney Store in the Palisades Mall, NY!
Today is the 30th anniversary of the Disney Store. Who would think of the Disney Store as a romantic date idea? We did, and that is exactly where Ben and I began our relationship. When we started spending time together, we always took a stroll through the Disney Store. We had so much fun looking at the toys and quizzing each other on Disney trivia. The flagship NYC store on Fifth Avenue was a special destination on our dates and we always looked forward to seeing new merchandise and exclusive NYC items. Ben knew that Disney was a definite way to my heart, and he expanded my Disney collection by many, many things! And, he always scored points by suggesting a walk to the flagship NYC store on Fifth Avenue. I miss that store- it was quite beautiful. But, wherever we traveled, whenever we found a Disney Store, we were happy shoppers!
I think that my favorite memory of the Disney Store was walking through the flagship location one day and hearing, with great excitement, “Abby, look, it’s Piglet and his best friend, Pooh!” Ben had spotted the figurine in this picture.
Piglet and his Best Friend Pooh! A very special figurine with very sweet memories.
I laughed as he caught himself and jokingly lamented that he was macho before he met me (not so macho, trust me!) He later got it for me as a surprise and I treasure it for those memories. From that point on, we would always exclaim, “Look, it’s Piglet and his best friend Pooh!” whenever we spotted things with these two best friends. This figurine and memories of our sweet times at the Disney Stores always make me smile because it is a sweet reminder of this man I loved who was such a romantic and such a child at heart. It’s nice to think back to the very early, pre-ALS days of our relationship.
A Valentine’s Day gift from Ben with Piglet and his best friend Pooh!
The Many Adventures of Winnie The Pooh Walt Disney Productions
For the first time since I started blogging, back in July 2016, last week I was having a hard time writing. I was feeling down, and writing was not helping me the way it usually does. I could not figure out why, and it bothered me.
I write a lot about reshaping my life, which has been an ongoing process. Even though he is gone, Ben has been included in my decisions in redecorating my apartment, traveling, spending my time. I often see things through his eyes and our eyes. Writing about these things, incorporating the Disney things that inspire and console me, is an important part of my healing. So, why was I suddenly having a hard time?
Finding out that the school where I teach is closing got me thinking- more- about how I want my future to look. I have been working hard to reshape my present and I’ve been feeling good about the steps I have taken to deal with grief, honor Ben and even support other caregivers and people with ALS. I even just wrote a post about how I’ve been finding myself. I do have more and more good days in the present, but I flounder when I think about the future. Last week, when I felt overwhelmed with grief again, I panicked and got angry at myself for stepping back into the pain, but it was actually looking ahead that was pushing me forward into anxiety. I realized that I am not only redefining my life in the short term, but also in the long term, and that includes redefining my relationship with Ben. But, I listen to Dory and “just keep swimming.”
Going to “Beauty and the Beast” without Ben compounded my sad acknowledgment that there are “us” things that I will do without him. It has been a year and a half since Ben left this world. I have put some routines in place, but he is very present in my existence. Somehow, when I went to see “Beauty and the Beast” I strongly felt his absence. Missing him is one thing, but living with his absence is another. That he is absent might seem like stating the obvious, and, of course, it is, but up until this point, my thoughts have so revolved around him that on some levels I have felt like I was still in our relationship. Maybe I need to fool myself, maybe it is just part of grieving, but it has kept him with me.
Once I started to piece together what was getting me down, I felt motivated to write this post. I do give myself the time to feel, and once I begin to sort out the “why” of the feelings, I do begin to feel better. At least, I understand my emotions, which allows me to be more patient with myself. In grief, as time moves on, we question our feelings, our thoughts and our “progress” as we step back into the land of the living. At a certain point, we might ask ourselves if we should be “over” the setbacks. And, if we don’t question it ourselves, we often have people around us who will point it out (click here for a way to deal with them)! I am finding that there are and will be steps forward and steps back, there will be adjustments, and there will be what feel like slaps of reality. They hurt. Sometimes, to work through the bad patches, I need the support of friends and family whom I trust to be honest but compassionate. Sometimes, I just need time to be in the moments. But, I do believe that it’s all okay. Or, it will be.
I always welcome your comments and experiences in the reply section below.