It was just last weekend, on Donald Duck’s birthday, that I wrote some reflections about my experience with grief in the nearly three years since Ben left this world. Today, I made some new observations. Classes ended yesterday in NYC public high schools. Today, NYS Regents exams began. I’m on the late proctoring schedule, and since I am devoted to my Fitbit and daily walks, I decided to walk to school, a little more than four miles from my apartment. It was a beautiful day, not yet too warm (I do not like summer heat).
As I do every morning to begin my day, I put on my playlist of “Ben songs”- songs that were important to him and to us. Then, I listened to the Beatles album “Hard Days Night.” Ben loved the Beatles and I have developed a strong attachment to their music because of him. After all, the first time we ever danced together was to “Twist and Shout.” Maybe not the most romantic song, but there was magic when we danced that first time.
As I walked to school, I thought about Ben and how life has changed since my caregiving days. Today, I woke up at my regular time and had the luxury of deciding to leave early enough to take more than an hour to walk to school. When Ben was here, I still would have been happy to have extra time because I could have stayed with him longer and not have had to rush through getting him set for the day. When he did have a private caregiver, on a day like today, I could have stayed home until she arrived, so neither of us had the anxiety of his being alone for any amount of time. Right now, it’s all about me, and, to be perfectly honest, I’m not so comfortable with that.
Although it’s close to three years since I lost Ben, my mind still quickly reverts to my caregiving days and memories of my schedules. When I’m thrust back to those days, it sets into motion a kind of movie in my head about the chaos of juggling work and caregiving. Then, I seemed never to be able to walk at the right pace, or fast enough, to get where I had to be. I continue to replay the following scenes: the panic of Ben being alone; constant texting to check on him; receiving an urgent text from him that I needed to rush home because he needed to use the commode, and then comforting him if I didn’t get home in time; getting his “10-4” or “copy that” texts after I sent an update; walking through the streets with my phone in hand just in case something happened (for a while, it could have been my dad or Ben).
The movie in my head did not make me cry today. It didn’t even unnerve me. It does not feel like a setback. I find that I am so keenly aware of Ben’s absence, and yet, of his constant presence. I don’t feel the same guilt about my “freedom” that I initially felt. However, sometimes I wonder if I will ever really be free, because I am so tied to those memories.
As Rafiki said, “The past can hurt. But the way I see it, you can either run from it or learn from it.” Maybe I have reached a point where I realize and can embrace that certain seemingly mundane or small events- even a shift in my daily activities like walking to work- will always remind me of Ben and our ALS days. Maybe these memories are becoming a kind of comforting reminder that despite the very ugly struggles of Ben’s brave battle with ALS, my caregiving days and our relationship during that time were incomparably and indefinably loving and meaningful and that now, Ben stays with me, even as I keep walking forward and looking for my new right pace.
Donald Duck’s birthday prompted me to revisit the post I wrote on this momentous occasion last year. At the time, with summer vacation right around the corner, I was propelled into the heartbreaking memories of debating with Ben how his caregiving would be done when school let out, and having those arguments negated because the summer of 2015 was spent at the hospital, where Ben ultimately succumbed to ALS. Those difficult memories have cropped up again as summer approaches. Since I read last year’s post, I have been reflecting on how my grief has shifted over these three years.
In 2016, as the first summer without Ben approached, I felt overwhelmed by the devastation of reliving every moment of time leading up to and including Ben’s time spent in the hospital, in which the end of summer coinciding with the end of his life. Of course, firsts are always difficult. I was consumed with worry about how I would feel during my first summer in many years without any caregiving responsibilities and without school as a distraction. Caregiving was pretty much the only thing on my mind, so I compiled my journal of Disney quotes and started writing this blog, which was actually very helpful as I sorted through the experience. It gave me a sense of purpose to think that maybe my words and experiences would help other caregivers. This, in itself, was an enlightenment. Although I wished that Ben had never had ALS and needed me as a caregiver, I found that I am a caregiver at heart and I am most content caring for and helping others. Unfortunately, sometimes this has proven to be a convenient way to avoid taking care of myself, but that’s a whole other blog! Since going to the theater is my favorite activity, I got tickets for all of the Broadway shows I had been wanting to see. I was excited at the prospect of seeing the shows, but, once there, I found that I could not truly enjoy myself. I missed Ben. I felt guilty about doing things that I couldn’t do when I was taking care of him. I had a lot of guilt about living my life when he was no longer here and we couldn’t not enjoy our life together. Although I had the freedom to do things, I did not feel the zest of “reclaiming” of my life that people told me I should feel. I wanted Ben to be here. I socialized more, but Ben was really the only thing I wanted to talk about. After outings, I often returned home in tears because home was so lonely without Ben. I went through motions, trying to convince myself that I was doing fine, but fighting myself often led to feeling worse. The fact was that embracing my life felt daunting, wrong, and somewhat impossible.
I spent that first summer dreading and planning how to spend the first anniversary of the day Ben left this world. I decided to make a video tribute to Ben for the blog and I pored over our photographs and videos. It kept me very busy and made me feel good to do this for him, for us. I bought a couple of computer programs to help me with the task, taking pride in the knowledge that Ben would have appreciated my mastery of the software. The anniversary day came with many tears and my keeping a low profile, except for sharing the video with friends, family and some of the special people who took care of Ben. I remember that the day after that anniversary was almost worse than the actual day. I spent so much time bracing myself for that anniversary, anticipating the sadness, making a plan to honor Ben. The next day, I was lost and I was miserable. I was unsure of how to act. Would people not want to hear about Ben and my grief anymore because that one-year marker had passed? What was appropriate in terms of talking about him? What was “healthy?” I knew enough to ignore the people who told me what I “should” or “had to” do, but I didn’t have any answers of my own. I’m a person who wears my heart on my sleeve, and I just had to let my life unfold, understanding that there would be good and bad days ahead.
The second year passed- I became more immersed in supporting other caregivers, particularly those caring for people with ALS, through my blog and various online support groups. I embarked on a certificate program to become a caregiving consultant. I did a lot of reflection and realized that I am most comfortable defining myself as a caregiver, so losing my dad and Ben also signified the loss of much of my identity. In many ways, the second year of grief was harder than the first, because the first year becomes such a fog and the loss is new and raw. In the second year, it seemed like I felt the sadness more intensely. Since I had formed some new routines, when a wave of grief hit me and threw me off course, I had a very hard time getting back on track. There was a constant loneliness, even though I was surrounded by people whom I love and who love me. I assessed everything I did, trying to prove to myself that I was respecting Ben, grieving appropriately, and coping well with life. The truth was that although I was active, going to the theater, seeing friends, writing, volunteering, and I even created a profile for online dating, I was also floundering. I was tiptoeing in the world of the living without really delving into it.
It was during that second year, last June, when I wrote Donald’s birthday post, and I could not shake all of the memories of the summer of 2015, when Ben went into the emergency room and everything changed. I found myself wondering if I was grieving too much, crying too much, dwelling on Ben too much. Still, I was determined to have a productive and positive summer and take grief with me. I made plans to travel to spend time with good friends, something I had not been able to do for several years. I was excited about it, and I did have a wonderful time, but Ben still had a huge presence. I talked about him frequently and kept him close, which sometimes made me miss him even more. I even bought things simply because he would have liked them, bringing them home only to face the obvious truth that he was not really here to enjoy them and then dealing with another setback. But, I have only come to understand in retrospect that I could not venture forth without him.
On the second anniversary of his “leaving,” as he called it, I reposted the video I made the year before. I decided to stay home and keep a low profile. Sadly, as it turned out, I had to attend the funeral of my best friend’s mother, who was often like a surrogate mom to me. It was a day of loss and tears but also of thinking of good times.
This year, heading towards the third anniversary of Ben’s passing, I am facing the summer with less dread. I still think of this time of year in terms of the markers of Ben’s battle with ALS, and I drift back to those memories and give into the bouts of sadness, but as Dory taught me, I just keep swimming. I accept that this time of year will probably always have a tinge of melancholy. However, with more enthusiasm and confidence, I once again made plans that I am looking forward to. I do not feel the same level of guilt about enjoying my life, although I still grapple with the knowledge that adventures would be better if Ben was still here. Some of my plans include things that Ben and I wanted to do together, like a penguin encounter at the Georgia Aquarium. I’m a little wary about it because it stands to be emotional, but I also want to honor our relationship and the things that were special to us. I guess the positive thing is that I am not letting grief or guilt hold me back from living. I am not yet comfortable being on my own, and still often refer to Ben and our life, but I am out in the world having new experiences. Maybe on some level keeping him so close keeps me in our relationship, but I fully believe in my heart that Ben is always watching over me, which gives me comfort. But, I am also creating new wonderful memories. I am not worrying- at least not yet- about how I will spend the third anniversary of Ben’s leaving. I have come to realize that I cannot plan my emotions. The day may be easier or harder than I anticipate. I will let my heart guide me and not fight myself. There will be no right or wrong about what I choose to do or not to do. As I reflect on the past three years, I see that I have learned to coexist with grief as I respectfully give grief its time.
I would not have predicted that Donald Duck’s birthday would provide an opportunity for reflection and insight into my grief, but reading my post from last year and once again poring over our photographs, with a combination of smiles and tears, let’s me know that I am doing ok. I still cry, I still feel sadness, I still miss Ben, and I am okay with that because those feelings speak to the wonderful times that we have over sixteen years.
Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!
The Disney magic must never be underestimated. When we were at Walt Disney World, Ben and I stepped into a carefree fantasy that helped us to, at least momentarily, transcend the challenges of ALS. Our photos, some of which I share here, were so important to Ben as his ALS progressed. He loved to relive the healthy days, but he also examined his physical changes as a result of ALS. The photos were essential to me in the early stages of grief, particularly when I wanted to keep him as close to actually being with me as possible. They remain a treasured and positive part of my dealing with the rough times of missing him. I never lose sight of how lucky we were to have a special love and 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, Donald Duck.
Yesterday, I wore Ben’s Lou Gehrig Yankees jersey to school. I have made it a tradition to wear the jersey once a year during ALS Awareness Month. The jersey is significant to me because when Ben asked me to get it for him when was diagnosed with the disease. He wanted to be a fighter like Lou Gehrig. Ben barely got to wear his jersey, but now I have adopted it and I feel proud and especially connected to Ben when I wear it. This year, going on three years since he left this world, I did choke up in one class as I briefly talked about Ben and ALS, but it’s okay if the kids see me being human.
My students expect to see me in a Disney t-shirt when I’m dressing casually or during our themed dress-up days. They are shocked but thrilled to see me in a sports jersey. They run and ask me if I am a Yankees fan. I smile and shrug. Of course, they look to see whose number and name I’m wearing. Immediately, I get the question, “Who is Gehrig?”
The first year that I wore the jersey, one of my middle school students asked me why I wore this particular jersey with the name of a player he did not know. I said that my husband had the same disease Gehrig had. He asked about it and I asked if he ever heard of the Ice Bucket Challenge. He did, but he did not make the connection to a disease. I told him the Challenge was to raise money to find a cure for ALS/Lou Gehrig’s disease. Trying to make sense of it, he asked if it was a disease where people were cold all the time. It made me smile then and it still does. If only it were that simple! They are young, they do not need a lot of details. Some will ask many questions, some will Google it, and they will learn. And, that’s a good thing.
I’m dedicated to taking the opportunity to raise awareness of ALS because Ben’s and my experience with ALS truly is never out of my mind. The students that I had while my dad and Ben were alive and ill learned about compassion when they saw me run out of school in tears in a panic because of an emergency, or when they listened to me explain on rare occasions that although I never use my cell phone in class, I was awaiting an important call from a doctor. And, when my phone rang, they were silent, and I know that many felt my worry. Some were sympathetic and compassionate. Those are life skills you cannot gain from a text book. They are important. Some kids do not learn this at home.
This year I am in a high school and the kids had many questions about ALS. We talked about how Ben had to have all of his food pureed, how if his hand slid off of his computer mouse that he had to wait for me to reposition it so he could type, how we sometimes had to spell out entire sentences, letter by letter. It was the inability to communicate that struck them the deepest, which is perhaps why the Project ALS Don’t Talk-a-Thon is so resonant and important. Mostly, we talked about having compassion and not making assumptions about people with disabilities. Some of them sat in stunned silence with their mouths open, some had questions about feeding tubes and ventilators, others were uncomfortable talking about anything sad. One student, who is going through her own family issues with illness, jumped out of her seat and hugged me. It was an emotional and unifying feeling for the class and I hope that feeling fuels the way they treat each other, particularly during difficult times. I think it does, because today, some students asked if I was feeling better because I must have been sad thinking about Ben, while others said that they spent a lot of time thinking about things that I told them.
Ben wanted to fight ALS, and he did, very bravely. Now, I fight to advocate for awareness and to support efforts to understand and work towards a cure for the disease.I may teach Spanish, but my class encompasses cultural understandings and often addresses issues of understanding and interrelations within the context of holidays and current events. I dedicate this small amount of time to proudly raise awareness of ALS and all it encompasses. While I love to see the students’ glee from seeing the klutziest, Disney-est teacher in school wearing a sports jersey, they are also learning about a man named Lou Gehrig who had a terrible disease that my husband had, too. They see how their teacher has a “real” life in which she cared for and lost her loved ones, experiences grief and continues to live and love and care for her students on our good and bad days. Life lessons. You don’t get those from textbooks.
When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun. But, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.
Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie. A couple of times, Mickey even helped me to help Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it was obvious that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.
It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that!
Thank you and Happy Birthday, Goofy! You are 86 years young, and a forever friend.
Today, May 20, is the Don’t Talk-a-Thon for Project ALS research. I am participating and donating to the cause to honor people like Ben, who lost their ability to speak because of this cruel disease, and to contribute to efforts to fund critical ALS research. Just last week, I wrote about how The Little Mermaid reminded me of how Ben struggled as his speech left him as a result of the progression of ALS. Much of this bears repeating.
It is devastating, and deeply personal, to elaborate on the impact of losing his speech, on him and on me and others who loved and treated him, but I feel very strongly that sharing these details helps to convey the physical and emotional effects of ALS and the urgent need to find a cure.
Ben was fortunate that his speech was very slowly affected. However, as the impairment grew, so did the ability to understand him. Since I communicated with him so much, I was better able to figure out what he was saying. However, phone conversations were extremely difficult. That added a lot of stress because Ben was alone when I went to work. When he finally agreed to having a medic alert device installed, there was a fear that if he activated the alarm, the response team would not understand or hear him through the speaker. Fortunately, the team also notified me if the alarm was activated, and I could run home.
Think of times that you have tried to explain yourself but your point was not understood. Frustrating, isn’t it? Imagine a day full of that. Imagine constantly feeling that. It’s not just the difficulty moving your mouth muscles and using your voice. It’s being understood, truly heard, feeling like you matter. ALS takes that away. Watching someone struggle and surrender, because they just don’t want to keep trying to express themselves, thereby losing their sense of self, is painful.
Suddenly, teams of doctors approached me, talking about moving ahead with a feeding tube and tracheostomy. These were things Ben had always said he wanted. Just the week before this crisis, Ben had spoken to his doctor about making arrangements for the feeding tube, so this was not a shock. However, seeing him with a Bipap mask on a ventilator, and knowing that the tracheostomy was imminent, was terrifying. Once in the hospital, Ben began to rethink his choice and wanted to have the time to make a firm decision.
Doctors talked to me about the need to devise a plan for communicating with him. We had not really considered these options because until this point, a tracheostomy was something to happen down the line. I called my local ALS chapter for advice and was told about communication boards where I could point to letters and commonly used words to help Ben express himself. I brought in paper and markers and made a chart with all the letters of the alphabet. I tried pointing to the letters so Ben could spell out words one by one. It was tedious, frustrating, and tragically sad. Ben hated it. He spelled out a little and then shook his head and stopped trying. Who could blame him? He wanted me to read his lips, but with the Bipap mask, his mouth was obscured. Also, his mouth muscles were not always cooperating, so reading his lips was not always possible.
His doctor suggested a new strategy of asking if each word started at the beginning of the alphabet, A-M, or the end of the alphabet, N-Z. Based on this, we literally recited the alphabet until he nodded that we hit the right letter. Imagine spelling an entire sentence like this, and then having an entire conversation like this. Sometimes Ben got frustrated that I said the alphabet too slowly, he understandably lacked the patience to spell the words out. Ben did prefer that we try to read his lips, and we tried. Since I was with him so much, it was somewhat easier for me to figure out what he was saying, but it was not always possible. There was very little small talk. A long blink was his way of sending me a kiss.
In the hospital, there was also no ability to call or text him. And, there was no ability for him to call for help in the hospital. People wondered why I spent 16 hour days in the hospital, and stayed over at his request, but it terrified me as much as it did Ben that he could not call for help. His hands did not allow him to press the call button and the variations of the call button also did not work. The nursing staffs really were great and they did stop by frequently, but I know that I will never fully be able to understand the depth of Ben’s fear and feeling of helplessness. They were very patient with my phone calls and requests. Ben was at least fortunate to be able to nod or shake his head as they tried to determine his needs. Many with ALS are not.
Basic conversation was challenging enough, with Ben having to spell out the simplest of requests, like blankets or asking me to play a specific playlist on his iPad. But, Ben was also making very serious decisions about how he wanted to proceed in life and death with ALS. I will never forget the meetings with his medical team where they discussed his options: life with a tracheostomy and ventilator at a facility or hospice.
Ultimately, Ben spelled out this message for his medical team:
I took a photo of it and texted it to his daughter, who shared it with the rest of her family. I felt that rather than my conveying a message, she should know her dad’s exact words. I don’t really know why I kept this horrible message, but I simply had to.
Once he decided to go to the palliative care/hospice unit of the hospital, we had to choose the day that he would separate from the ventilator. I remember him spelling out for me, “When is a good day to die?” It broke my heart to write that and to have to grapple with that. Try to imagine what it must have been like for Ben to tediously spell that out. I still can’t. You can’t either. I’ve said it before and I will always stay in awe of his bravery.
In his last days, I did try to read his lips as much as possible. On the morning of the day that he left us, he asked to say our vows, and he mouthed them and his, “I do.” It is heartbreaking to think of it, and yet, it gave him joy, and it does give me joy to know that he had a beautiful last day filled with love and music.
I share this with you because learning about the actual experiences of people with ALS and their loved ones is, in my opinion, the most heartfelt and accurate way to begin to explain the tremendous cruelty of ALS and the very specific ways in which it affects patients and their loved ones.
Ben was fortunate to have had his voice for five of the nearly six years that he battled ALS, even though it was impaired. His physical voice gave him an emotional strength. When he lost the ability to be heard, he felt invisible and terribly vulnerable. Many people with ALS lose their voices very quickly and live with that feeling for several years. The Don’t Talk-A-Thon asks people to take a vow not to use their voice for at least an hour. Just an hour. Think of the trivial things that we often say over the course of an hour. Think of the many silly texts we send over the course of an hour. Those are luxuries for someone with ALS. But, those little things convey who we are and envelope our personalities. ALS robs speech but we cannot allow it to rob dignity. As caregivers, family members and friends of people with ALS, our patience, creativity and compassion helps people with ALS have a voice and feel significant.
By supporting ALS research through efforts like the Project ALS Don’t Talk-a-Thon, we can be the voice for people with ALS, and contribute to efforts to find a cure.
If you would like to learn more, participate in, and/or contribute to the Project ALS Don’t Talk-a-Thon, please click here.