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.
These days, I find that I spend a lot of time reliving the memories of Ben’s last summer, which we spent in the hospital. The memories are often difficult, and there are many tears, yet, I also do remember the profound love that we showed each other. I am beginning to be able to honor his memory with more of the joy I experienced with him, despite the overshadowing realities of ALS and losing him.
This weekend, I was invited to my friend’s home in West Hampton, NY. It was absolutely beautiful. For several years, I was not able to have a weekend getaway. I could not and would not have left Ben. Though I did think about that while I was away, and about how Ben and I loved to go on little getaways, I felt less guilt this time, and I was able to really enjoy myself. At times, I enjoyed myself through Ben’s eyes. He would have loved the water views, as I did, and he would have had so much fun at the farmer’s market and outlet shopping. Knowing these things does sometimes bring much sadness, but it also keeps him close, and that lets me embrace life more easily.
The event Ben would have loved most of all was the concert we saw by the Fab Faux, a Beatles cover band that is absolutely amazing. I had never seen them before last night, and the concert was THE place to be in West Hampton! The seat next to me was empty, which was unusual given the sold out crowd. But, to me, it was as if that seat was there for Ben. I listened to and loved that concert for both of us. At the end, the band played “Twist and Shout.” This was the first song that Ben and I ever danced to, starting when we were at a gala for the organization where we worked and met. It became one of “our songs.” When the Fab Faux began to play the song, I actually felt a sense of panic as all of my emotions converged, and I didn’t know how to react. Ordinarily, a memory that dear to my heart would make me cry- happy to hear it but missing Ben and thinking of the dances that we will never have. Last night, however, the song made me smile and, yes, to twist and shout. I was lost in the smiles and laughter of those memories. I felt Ben there with me and I enjoyed the live performance in his honor, with the tremendous enthusiasm that he would have felt. I know that he will always be dancing with me.
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
The beginning of July should be a great time for me. After all, I’m a teacher, and school ended on June 28. On the last day of school, I did my annual Snoopy Happy Dance and left the school building with a big smile on my face. The thing is, for me, summer is now filled with a lot of sad memories, even though I am reshaping my life and do have more joy. Today, July 6, marks the second anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center, where we were met by Ben’s hero and doctor, David Muller, who would, over the course of that summer, become my hero, too. Today was the date when everything changed for us, because this was the summer where Ben succumbed to ALS.
I cannot help but think back to how that summer of 2015 began on a difficult note. Ben had decided, without conferring with me, that he would let go his private home health aide on the last day of school and that I would take care of him 24/7 for the summer, with a few hours of assistance during the week from a home health aide provided by hospice. To be honest, I was upset and I was also worried. Logistically, how would I even run any errands? Emotionally, I could not understand, and was hurt, that Ben did not realize how difficult-physically and mentally- it was to be his caregiver around the clock, or that he did not think it was something that we should discuss. Although, two years later, I can rationalize my thinking and my reactions, I still feel bad about it, because I would do anything to have him here and healthy today. As it turned out, that summer was spent at the hospital, I was at his side day and night, and I did not want to be anywhere else.
Yes, for me July 6 was the beginning of the end and the memories are still vivid. I remember being in the Emergency Room and meeting with teams of doctors, while also contacting our ALS chapter. I had spent so much time in Emergency Rooms with my dad that they were sort of my normal, but Ben being in crisis was not normal. I remember Ben having different masks on to try to find the most comfortable and effective one, while we struggled to communicate because he couldn’t speak and I could barely read his lips through the mask. And yet, I remember sweet moments, and laughing, too. I remember that I couldn’t kiss him when he had the Bipap mask, so we blinked our eyes tight to show a kiss. How ironic that July 6 is International Kissing Day! But, as the song from Cinderella goes, “So this is love” when you are dealing with ALS- a different kind of true love’s kiss.
Ben had always said that he wanted to do anything to stay alive, but once in the hospital, he wanted to rethink that choice. Many visits and emails with Dr. Muller helped us sort through a lot of that. I’ve written about this a lot on the blog, but it is worth repeating that I told Ben that I would support any decision he made, because only he could decide how he wanted to live and die with ALS (click here to read Sometimes the Right Path is not the Easiest One). It was not easy to grapple with the complications that arose during his hospitalization, and to have doctors explain that these complications were indicators that this would be life with a feeding tube and tracheostomy. It was heart-wrenching to have Ben say he was miserable and then, having made the decision to go to hospice, ask me to help him choose a good day to die. I don’t think those memories will ever become easier. I was not prepared to lose him because his drastic decline was so rapid. For the same reason, he was not prepared to have to make the decision to separate from the ventilator and leave.
It is touching and consoling that music proves to be so important to my healing and to my memories. Every single morning, I listen to a playlist of songs that Ben loved and that were significant during our relationship and that summer. Ben would love that. I cannot forget how the song “One Dance” was my reality check, and the song during which I completely gave in to the devastation. I am reposting the video with that song. To read my post about the song’s profound significance, click here.
Last summer was my first summer in many years without caregiving responsibilities. I felt lost and conflicted about all of the sadness mixed with the potential to actually enjoy the summer. The first anniversary of losing Ben loomed over the whole summer. I launched this blog during that time, and it has been invaluable in terms of thinking through my own emotions and feelings, dealing with grief, and interacting with so many incredible people who are also taking journeys with ALS or other illnesses, caregiving, and grief.
As I faced the beginning of summer vacation, particularly today, I have dealt with tidal waves of emotion and difficult memories that are woven into my glee at the summer freedom from school. I wonder if the approach of summer will ever come anxiety. It helps me to reflect on memories and events, even though my emotions are Inside Out. Intellectually, I can see that despite being someone who cries easily, I have grown a lot in the past two years, in terms of my perspective and my devotion to caregiving and caregivers, with an especially deep connection to people dealing with ALS. I think that would make Ben and my dad happy. I do find comfort in my conviction that Ben is in a place where he is free from the constraints of ALS, and he is talking, eating, dancing, walking and playing his music. At the same time, I miss him and still find myself talking to him and seeing things through his eyes. These mixed emotions have become a way of life. I chose to write this post because although it has been two years and there are still, and always will be, tears and broad spectrum of memories, I know that this is the unsteady rhythm of life and death and love and loss, but it’s all okay. Summer will be okay. Ups and downs are okay. I’m okay, even if I don’t feel that way at this exact moment. My Disney connections still keep me focused and able to deal with the sad times and the loss. After all, “Love is a Song that Never Ends” and, as Belle’s father Maurice said, “It is love we must hold onto.”
Remembering Donald’s birthday prompted me to yet again revisit all of our photographs from Walt Disney World. I have been feeling a little emotional these days. I think it is the nearing of the two year anniversary that Ben went into the emergency room and everything changed. Summer also signals the anniversary of the summer spent at the hospital and the summer that Ben succumbed to the ALS. It’s never been my favorite season- I hate the heat, but now there is the added set of memories. I definitely feel a certain level of anxiety, but as Dory taught me, I just keep swimming.
I find myself poring over the photographs with a smile on my face, and yes, also some tears. Donald was always so much fun at the meet and greets. And, being a Spanish teacher, I did especially love when he was at the Mexico pavilion at Epcot.
I share these photos because photos and memories have played such an important and positive part of my dealing with the rough times of watching Ben decline as his ALS progressed, and dealing with grief. It does not mean that I don’t get upset or lament the times we will never have. But, I also think about how lucky we were to share this love of Disney that always shed much needed pixie dust on our lives. Donald is part of those special memories that comfort me. So, with gratitude and joy, I say Happy Birthday to Donald Duck.
I’ve written about changes I made to my apartment after Ben passed away. The painting and recarpeting had to be done- the ALS battle scars were so huge. There are things I’ve displayed and put on the walls that remind me of him and of us and I love to be surrounded by these things and memories. But then there was his table, the ugly table he used as a desk that even he didn’t like. I thought it would be easy to replace it, and I picked a little dining table that I was excited about. But, when I started to think about not having his table anymore, it was very emotional for me. I decided to keep it and use it for baking, because Ben would love that. To read my post about what happened to that table, and things that matter, click here.
I have been looking for dining chairs since I got the new dining table. Imagine my delight when Ethan Allen launched its Disney line (click here to visit the site)! I fell in love with the Mickey Mouse dining chairs and had to order them. I thought about replacing Ben’s desk chair, because the foam on the arms is completely falling apart and it is not as sturdy as it used to be. That chair holds many memories, some good and some bad. I sit in it every day and remember how that chair functioned as Ben’s desk chair and, also, as his wheelchair, because it was narrower than a wheelchair and could get through the narrow doorway to the bedroom. I dragged the rolling chair to and from the bedroom every day. I transferred him from that chair a few times a day. We always worried that it would collapse, and thank goodness it never did. He sat in that chair all day. I fed him meals, shaved him and we watched tv and had our conversations while he was in that chair. I still find myself looking at the chair and talking to Ben when I need some kind of an answer or sign from him. The thought of not having the chair here made me cry. The chair is staying. The memories, good and bad, and the smiles and tears, are part of what our life was with ALS, and it all matters.
The chairs arrived on Saturday. They are beautiful. Ben would love them. But, right now I am coexisting with them. They don’t quite belong yet. It’s like the holiday ornaments I purchased when I went to London in October (click here for more about that.) I tried to create the tree exactly as Ben and I had it, with our ornaments in precisely the places where Ben liked them because he could see them from his desk. The new ones were jarring. Now, these chairs are jarring. It’s hard to enjoy them completely without Ben. I know in my heart that he would be happy for me. But, he’s not here to enjoy them with me, so it’s kind of bittersweet.
I know that I have to create new memories in my home. I still struggle with that. I hope that my friends will visit and enjoy the chairs and meals that I will prepare. And, as we look around the apartment, I do hope that they will also feel and celebrate Ben’s presence. As I find new ways to relate to Ben, I know and take comfort in that he will always remain a part of everything I do.
I always picture Ben like this, in his chair at his desk. The chair stays!
“You don’t lose hope, love. If you lose hope, you lose everything.” – Mrs Potts , Belle’s Magical World
ALS Awareness month comes to a close today, but patients, caregivers and loved ones of those with ALS continue to live with the physical and emotional effects of the disease. August will mark two years since Ben left this world, free from his struggle with the disease. I want to conclude this month by offering this wisdom from Mrs. Potts of Beauty and the Beast fame.
I have written often about Ben’s bravery and persistence. It has taken me a long time to come to understand that I was brave in a different way. And, I can honestly say that hope played a tremendous part in our lives. There was hope that things would get better and we would find innovative ways to help him eat, use his electronics, and maintain a good quality of life. There was hope that the next day would be less stressful. There was hope that each day would have some smiles and laughs. There was hope that I would remain patient. There was hope that Ben would accept that his needs were increasing. There was hope that he would have more time. There was hope that the disease would progress slowly. There was hope that he would transition peacefully.
Was it naïve to hope? Was it like my tossing coins in Cinderella’s Wishing Well? I don’t think so. To wish is to hope, and I have often written about wishes on this blog. Hope allowed me to reach for optimism. It allowed me to see the positive things, even if the big picture was not good. It allowed me to recognize and be relieved and content that one day was better than the prior one, not because the ALS was getting better or going away, but maybe because we were in better moods or successfully solved a problem. Hope allowed me to fantasize in a healthy way, remembering wonderful times and trying to recreate those and create new ones. It allowed me to be a creative thinker. It allowed me to smile, even through tears.
Hope was my pixie dust. Because I had hope, I was able to open my mind to finding ways to help Ben and to help myself. Hoping beyond hope that Ben would transition peacefully gave me the mindset to work towards making that happen. Love let me cope with the moments when hope was waning.
Hope also has helped me get through grief. It has allowed me to envision a positive future without Ben but with love. It allows me to seek opportunities to help others who are dealing with ALS.
I still have hope and I do make wishes. I hope that I always honor Ben’s memory in a way that he would appreciate. I hope that my blog and interactions with people affected by ALS will help and comfort them. I hope that I will find love again. I hope beyond measure that a cure will be found for this horrible disease.
In a way, hope is a gift, because it allows you to escape some harsh realities. I hope that all of my readers who are affected by ALS will find ways that inspire you to be hopeful and to see past the dark clouds to clear your mind, if only temporarily. There are reasons to be hopeful as we look at the research being done. There is also hope for comfort and the future as we look at the communities and forums of supportive and caring people that connect us because we share a deep bond of understanding and empathy.
Yes, ALS Awareness Month is ending. But, I hope that the determination never wanes to continue to raise awareness of ALS and the brave battles fought by people like my Ben.
I agree with Mrs. Potts. If you lose hope, you lose everything.
2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.