What Alice Knew About Caregiving, Grief and My Identity

abby_admin ALS, Caregiving, Disney, Grief, Uncategorized 4 Comments

I saw this quote with an image from the Walt Disney Productions animated film, as I’ve shown here. In fact, it is from the book by Lewis Carroll.

School started last week. Two days of just the teachers and administrators and two days with the students. Of course, no teacher sprints back to school, but when my dad and Ben were ill, I especially  dreaded that day. In those days, some teachers knew not to even ask me how my summer was. They knew not to ask me how my weekends were! I would sit and observe everyone sharing their fun summer stories and just hope that I didn’t get asked questions so I didn’t have to shrug and get those sympathetic or pitying looks.  After I lost Ben, when I started in a new school, where only a couple of people knew me, I could just give a generic reply to strangers rather than reveal how difficult summers were. I’m not a terribly superficial person, so it felt like I was not really being myself, yet I was grateful to shed the image of the caregiver running in circles to tend to her dying dad and husband, or the woman grieving her losses. Last week, when asked how my summer was, it was a strange feeling to be able to respond with complete honesty and enthusiasm that it was great. I was keenly aware of feeling good and yet awkward about that answer.

Summer remains a time that is shadowed by the sad memories of Ben’s departure. As this summer approached, I braced myself for those memories but still made plans that I would enjoy. I am pleased, relieved and even proud that I truly had a delightful summer. It feels like an accomplishment. Still, it comes with a bit of guilt and confusion.

I sometimes wonder if my ability to fully immerse myself in life and joy means that I am distancing myself from the loss of Ben. Is it a lack of respect for Ben? Does it appear that way to others? If being Ben’s caregiver and grieving widow have been the ways I have defined myself for such a long time, who am I without those most important aspects of myself? Who do I even want to be?

Although I felt relieved to be able to smile and say that I had a great summer, there was so much emotion and history behind that seemingly simple response. People who have known me through all the difficult years know that it is a big step to be able to experience joy again beyond just having some good times. I am so grateful and appreciative that they are happy for me. For those who don’t know me, it is just casual conversation among acquaintances. Part of me is happy to be a new Abby without that sad history. Part of me feels that those are such vital pieces of who I am that to be unaware of them is not to really know me. Also, it feels strangely disrespectful if Ben is not somehow a vibrant part of the new Abby. It’s hard for me that I’m no longer part of Abby and Ben. By saying I had a great summer, it feels that I am not acknowledging the pain that did exist and continues to haunt me. It dismisses my ongoing struggle to achieve a balance between living in the here and now and taking Ben, and essentially, my past, everywhere in my heart.

Alice was right. I can’t go back to the person I was before the caregiving days and grief. Those experiences did change and shape me. People will not necessarily know my experiences. If they get to know me, it’s likely they will because Ben, and our journey with ALS are vital parts of the person I have become. This blog, my volunteering and my goals to work with other caregivers evolved from those experiences. All these things keep me heading towards the future but also keep Ben with me as I venture forward.

Who am I? In some ways, am still floundering to define myself. I hope that in time I will become more comfortable with myself without so much self-assessment and self-criticism. I knew myself best as a caregiver and person in grief, and the transition to a life without those prominent roles has been difficult.  Of course, grief does not really go away, though it shifts. The Abby from before my days of caregiving and loss has always lived within me during those rough years, but I am just not exactly sure who I am at this point in time. Maybe this is simply who I am, realizing that as we go through life, it’s okay that people will enter and exit and not necessarily know my history. I have yet to be comfortable with who I am in the present and as I look to the future. Maybe I need a looking glass.

How Walt Disney Helped Me Understand Grief, Happiness and Optimism

abby_admin ALS, Caregiving, Disney, Grief, Uncategorized 0 Comments

Happy memories from Walt Disney World.

I have been hearing and reading so much about how we “have to” choose to be happy. Maybe it’s because last week was the fourth anniversary of the day that Ben left this world, but I have been thinking about the many pieces of advice I have received about dealing with grief. I have been thinking about my own happiness and attitude and how they continue to shift over time. Walt Disney has been an inspiration to me in so many ways. He said two things that make a lot of sense to me when it comes to grief and how we look at life. It seems to me that we tend to equate happiness and optimism, and while there may be a connection, we must draw a distinction between happiness and positivity or optimism.

 “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

 “Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

From the time that Ben left this world, I received the rallying cheers about the good news: I had my life back, it was time for me, it was time to move on, time to close the book and start a new chapter. Sometimes, I felt like people said these things to make themselves feel better, or because they felt uneasy with my grief. Some people were simply judgmental and felt that I had exceeded their idea of an appropriate time to feel grief. Superficial clichés are easy to spout when you just don’t want to invest in conversation. Yes, I knew that Ben would want me to be happy, but what I realized is that if I wasn’t acting happy, certain people were uncomfortable. They wanted to advise but not to listen, but I was not happy and did not want to act. I learned when to be very superficial and when I could truly be myself. I am very fortunate to have been surrounded by a lot of genuinely caring and loving friends/family. They have been there for me throughout my experiences in caregiving and grief, and while I’m sure it was difficult for them to listen to and see my pain and stagnation, they let me express myself, validated my feelings and gently shared their thoughts. Those who were more adamant about what they felt I “should” or “had to” do definitely felt more tension when I asserted myself and my right to feel the way I did. Many times, the best support I got was a compassionate ear, and at times, a shoulder. Sometimes, the best help you can offer is your presence. Telling someone who is grieving to simply choose to be happy and do things to make themselves happy is dismissive and tone deaf.

The notion of happiness is not easy in grief. I may have found a lot of happiness-or maybe more comfort- in the memories, but the sadness was also palpable. Sometimes there were brief moments of happiness that snuck into my overall feeling of devastation, but I still did not feel happy in my life. It was often suggested that I do things that made me happy, but I did not know how to begin to identify those things, and frankly, I did not want to feel happy. Sometimes the grief was overwhelming and paralyzing, and at those times it took too much energy to be optimistic or positive enough to look for happiness. A happy event was frequently followed by confusion, frustration and amplified sadness when I realized that it was nothing more than a fleeting distraction and I was still arriving home to be alone without Ben. I was not quite sure how to define happiness- for a time it was just a moment of not feeling the pain of grief. Having experienced the loss of my parents, grandma and other loved ones, I did, however, know that there would be shifts and I chose to be optimistic that happiness was attainable- at some future and unpredictable date.

As Joy learned in Inside Out, in life, happiness and sadness are not mutually exclusive, and anger, disgust and fear also have their roles. When I have tried to process my caregiving days and the losses, the idea of happiness seemed way too elusive and simplistic an option and those happy moments that I experienced were only a superficial illusion. There was also a lot of anger at and disgust with ALS, some people around us, even Ben and myself, and that’s hard to think about, although I have gained some perspective with time. Fear has also been prevalent- first, it was the fear of impending loss and potential crises, then fear of the future and fear of being alone. I desperately wanted to be happy, despite not really knowing what would make that happen or how it would feel, but I also wanted to feel that I was reaching to be positive and optimistic.

For a long time, the idea of happiness came with a lot of guilt, because Ben could not share that happiness and so much opportunity was taken from him because his life was cut short. Was it appropriate to be feeling happy or enjoying my time? Did it mean that I didn’t miss Ben anymore? Did it mean that I was happy to have been absolved of my caregiving responsibilities? I judged myself as much as, or more than, I felt judged by others.

Grief comes with ebbs and flows, and good and bad days and moments. I have a lot more good days after four years, or five and a half if I count the loss of my dad. There is more light in my life now, and less guilt, and I know that the people who love and care for me are glad to see me taking positive steps and genuinely enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

Walt Disney also said, “In bad times and in good, I have never lost my sense of zest for life.”  For me, that is the distinction between being positive or optimistic and being happy. Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, escaping for a while into a Disney frame of mind helps me to be positive. Trying to stay positive is my choice, but it doesn’t mean that I am always happy. I wonder if being optimistic in our nature, but for me, it’s always worth the effort to be optimistic. Still, I accept all the emotions and phases of grief and of life.

I think about Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. There was happiness and certainly sadness, fear and anger, but he always did try to be positive. It was an important lesson for me.

I do want to add that social workers and other mental health professionals were also available to Ben and to me. I was more willing than Ben to discuss my feelings, but when I did feel overwhelmed, I did see a therapist and speak to some of the people from Ben’s team, even after he was gone. It is always a good option if you are struggling with your emotions or need an objective listener.

Being positive allows me to follow this advice from Walt: “First, think. Second, believe. Third, dream. And finally, dare.”

Am I happy now? Well, I’m happier. I am pleased and even proud of myself for creating a truly wonderful summer for myself, where I felt more joy and fulfillment than I have since I lost Ben. While the anniversary of Ben’s passing on August 26 was still a very difficult day, the sadness is something I accept and embrace because it is all part of my life experience. This summer, I realized that I have found ways to do things that bring me joy while keeping Ben close, in my heart, and that feels right and gives me balance. I think this gives me more moments of complete happiness rather than brief happy distractions from going through motions in my life. These moments are the ones that keep me optimistic and propel me forward and allow me to keep dreaming and believe that I can make my dreams come true. I know that happiness is not everything, particularly when it is fleeting and superficial- I am not that much of a Pollyanna. I do aim for contentment and trying to maintain an optimistic outlook that I will achieve it. I’m floundering and anxious about my next steps in life, and I am shaken when something triggers a setback in grief, but even when I’m getting caught in the undertow of emotions, I think positively like Dory and dare to just keep swimming.

My buddy is Cruz. Summer 2019- finding happiness!