What Simba and I Know About Grief, Disappointment and Loneliness

abby_admin ALS, Disney, Grief, Uncategorized 4 Comments

On the heels of the third anniversary of the loss of Ben, I got medical test results that indicated that further testing is needed. My doctor is not concerned and believes I’m fine, but says it should be addressed. I am a terrible patient, which any of my doctors will attest. Just going for a check-up comes with a lot of anxiety. Ben was much braver than I am. My cat, Disney, is much braver than I am. Now, I have to go to a different doctor, which causes a lot more stress. And, this doctor is away for the week. Normally, I email or call a couple of friends to vent and get suggestions. This time, I chose not to. I don’t want to be the bearer of more sad news in my life, especially when I’ve been doing better. I guess this post will put it out there, but it is not something I want to discuss.

When my dad and Ben were ill, I was the dutiful and loving caregiver who accompanied them to every medical appointment. They were never alone. Likewise, when Ben was well, if I was nervous about an appointment, he accompanied me without my asking. Ben was frustrated that he could not join me when I called him from the emergency room that I had broken my shoulder, but he was still at home to comfort me. Things have changed. Two years ago, I had to have a pretty standard out-patient procedure. I had arranged, per protocol, to have a friend meet me afterwards, but I went to the hospital by myself. I didn’t think it would be so much like going into surgery, so I was overwhelmed by the situation. My doctor is pretty good at anticipating and handling what a nervous wreck I am, but I was not dealing well with all of the strangers.  I don’t think I ever felt so alone. It was then that I realized that I might carry Ben in my heart, but at times like this, the truth is that I am by myself. I am probably most comfortable as the caregiver rather than the caree, but this circumstance made me see that there are times I want to be cared for. I have wonderful friends who would be there if I ask them, but I no longer have that person who would be there without my asking. Thankfully, everything was fine. But, if there had been complications, or if there are any complications this time around, I am pretty much on my own to tackle them. Hopefully, my doctor is correct and I am fine. Right now, I’m having a little pity party and feeling like Simba- “You said you’d always be there for me, but you’re not.” Ben may be watching over me, but at times like this, it’s not enough.

Life happens, healing happens, and setbacks happen. Disney always helps me deal with my feelings. The Lion King is just one of the films that’s helped me deal with loss and grief (see that post by clicking here). Writing is another way that I cope with the setbacks. It helps me to channel my sadness and frustration. Writing sometimes takes the issue and breaks it down. It won’t change my reality, but it does relieve some of my near hysteria. It was a good way to start this period of waiting to see this new doctor. I hope that anyone who reads this has strategies to help cope with sadness and grief. Feel free to share your own strategies in the comments, as they may inspire others.

I like to put a positive spin on things, so maybe I have to say to myself that this will be one more way that I learn that I am braver than I believe and stronger than I seem. I will remind myself that I am fortunate to be able to function independently and at least fairly wisely. For now, I just wish they were here.

Disney’s “Christopher Robin” and Pooh Helped Me Sort Through My Ideas About Grief

abby_admin ALS, Disney, Grief, Uncategorized 2 Comments

Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.

It will come as no surprise to anyone who even vaguely knows me that I was very eagerly awaiting Disney’s Christopher Robin. I love my buddies from the 100 Acre Woods. There are so many wonderful memories of the joy and laughter they brought to Ben and me when we visited Walt Disney World. One of my very favorite memories was seeing Winnie the Pooh at the lunch buffet at the Crystal Pavilion. This was after Ben’s ALS had progressed a bit, and Ben was unable to walk around the buffet or carry his plate, so I got him settled at our table and went to get our lunch. When I returned to the table, Ben told me that I had just missed Pooh, and he said that he told Pooh that I would be so disappointed to have missed him. Ben’s speech was impaired and he hoped that Pooh understood what he said. Sure enough, as I went to take my seat, Pooh came running towards me with outstretched arms and he gave me a big hug. He tapped his head, showing me that he remembered to come back to see me. It was so sweet and Ben was beaming. You see, with ALS, I was always taking care of Ben, and in this situation, he was able to do something very special for me. Pooh would not have known that, and Pooh may say he is a bear of very little brain, but clearly, Pooh has a big heart and a lot of compassion, and in my book that is very smart indeed!

The opening of Christopher Robin seemed so perfectly timed, since I began my blog at this time two years ago, starting with the famous Christopher Robin quote, “You are braver than you believe, stronger than you seem and smarter than you think.” This quote continues to resonate. Christopher Robin was a very wise little boy and Pooh was not such a silly old bear.

The film was even more wonderful than I had hoped. It is delightful but also thought-provoking and touching. We learn that Christopher Robin may have thought that he grew up and away from the 100 Acre Woods and his imagination, but it was only in tapping the child within him, and his love of Pooh, Tigger, Eeyore and Piglet, that brought Christopher Robin back to what was important in his life. It’s an important lesson that tugged at my heartstrings.

At one point in the film, when Christopher Robin is trying to figure out which way to go, Pooh says “I always get to where I’m going by walking away from where I’ve been.” It was a sweet and silly comment from a sweet and silly bear, but it made me think about where I was three years ago and where I am now. At this time three years ago, Ben was in the hospital deciding if he wanted to go through with getting a feeding tube and tracheostomy. Ultimately, after having those procedures, he made what I consider to be a brave choice to separate from the vent and, ultimately, to succumb to the disease.

Halloween 2012

After experiencing the profound loss, I was immersed in grief, going through motions in my life but with my feet firmly planted in grief. Kind and caring friends and family wanted me to leave that place, but grief was where I belonged. I could have tried to avoid the pain of grief by walking away from the memories of that overwhelmingly difficult time and landing somewhere- anywhere- else. But, as the movie poster says, “Sooner or later, your past catches up with you.” I don’t believe that I would have been able to ignore the pangs of sadness. Life changed in so many ways and the loneliness and devastation of how much was taken away from Ben and from us was always in my face. But, if I walked away from that part of my life, wasn’t I walking away from my entire relationship with Ben?

Eventually, I reached a point where I wanted to venture forward, but only by dipping my toes in the land of the living. I was floundering, without a sense of where I was going. All I knew was that I wanted Ben to come with me. So, I stepped away from where I was, but Ben was constantly in my thoughts and always vivid in my heart.  Sometimes that has been enough and I have kept pace, and sometimes the deeply present feeling of his absence sends me stumbling backwards.

A conversation between Christopher Robin and Pooh sheds light on why I am so bothered by the idea of walking away. In the film, Pooh asks Christopher Robin, “What should happen if you forget about me?” Christopher Robin replies, “Silly old bear. I wouldn’t ever forget about you, Pooh, I promise. Not even when I’m a hundred.” Maybe, for me, walking away implies leaving behind and then, possibly forgetting, and those are things that will never happen for me.

I think about how Ben stays so present in my heart, as do my parents and grandma. Sometimes I feel that people would prefer that I not talk about Ben so much, but, at least for now, it’s what feels right. Maybe the talking about him with such frequency will change, but he and my other loved ones will always be a part of me. It has taken these three years to become more comfortable with the knowledge that continuing to live does not mean that I am walking away and leaving them behind, because they are embedded in my heart and soul, never to be forgotten.

Halloween 2011. Piglet was bigger than we’d imagined!

At this point in time, I may have walked away from the deep grief, and I haven’t exactly worked out where I’m headed, but I carry all of my memories- from the tragic to the beautiful- with me. Do I still give in to tears? Absolutely. Sometimes, when I am having a setback, I return to the grief-filled place. I think it’s okay. Feeling the sadness at times allows me to reflect and to feel that love again. But, I also comfort myself in wondrous, loving and meaningful memories, as well as lots of silly and lighthearted ones. I embrace that our experience with ALS- including caregiving and loss- was a part of our entire sixteen years together and it has contributed to who I am.  Writing helps me to check in with myself and reflect on how my emotions have shifted over time.

I highly recommend Disney’s Christopher Robin. It will make you laugh, cry and reflect. And, I’m happy to say that Eeyore steals some scenes with his gloomy but hilarious sarcasm- he’s my favorite, but please don’t tell the others! Also, please be sure to stay for the credits, where you will see a very cute scene featuring the legendary Richard Sherman, who wrote and performed some of the music in the film. It’s fantastic and heartwarming to see him still creating and being a part of the Disney magic.

Halloween 2011. Ben used the scooter but he liked to stand for pictures with our buddies at Walt Disney World.