I have written about theater and its importance in my life (click here to see a prior blog post). It was the thing I missed the most when I was caregiving for my dad and Ben, the thing I turned to for peace of mind, enlightenment and inspiration. It is my favorite form of self-care. Of course, a Disney show is pure magic! Even when it is very difficult, as today was, theater always sheds light on my world.
This afternoon, I saw an off-Broadway play called Cost of Living, by Martyna Majok. It is a brilliant play that tells the stories of people who are brought together and who are caregivers or need them. I cannot deny that I was nervous about seeing the play. I am always emotional, and this is a tough topic, albeit one that is integral to my very being. I was also curious about how it would tackle the subject- the title itself was intriguing.
As it turns out, it was, indeed an intense experience. There were aspects of caregiving- from the physical tasks to the impacts on relationships- that brought back memories that had begun to haunt me less frequently. Still, it was beautifully done. It is important to tell these stories. This is a play that should be required viewing, particularly for those who know and want to support caregivers. The vulnerability and fear were palpable, and so are the strength and bravery. It feels good to know that these stories are making their way into art.
I couldn’t find words after the play. I walked to the Hershey’s store, where, ironically, I was buying chocolate for my school club that is essentially serving as caregivers for the school and local community, and even planning events for next month’s National Family Caregivers Month. My club is a positive result of my own caregiving experiences, and I am thankful that I have been able to channel the hard times to help others. Still, it doesn’t take much to invoke a storm of bad memories and tears.
I ended up needing the long walk home. I rehashed memories of caregiving and of the rough times. I thought about the character who missed his wife and how much I still miss Ben, say good night to him every night and often turn to his desk chair and talk to him. He’s very present in my life despite his absence.
NYC is a big and busy city. No one would notice my crying. That is a good thing, actually. I just needed to be with my thoughts. I put on my “Ben Playlist” and listened to our songs. I thought about the times when I was rushing to run errands quickly because I did not like to leave Ben alone, and it struck me that no one could have known what was going on at home. I remembered meeting the woman on the street who on the surface seemed unnecessarily annoyed at not finding the address she sought, but I walked with her and, sensing her panic, I found the location for her and then accompanied her. As we walked she revealed her own illness, which was not apparent (click here for more about this experience) and I was thankful that I helped rather than judged her. When the pandemic hit, and some people were complaining about wearing masks, I said that I wore mine because if Ben had been alive, I would have been terrified about potentially bringing COVID to him. in support of anyone feeling that kind of stress, I wore my mask even when guidelines cautiously eased about their necessity in some settings.
There is indeed a cost of living. We never know what is going on in someone else’s life. Are they ill? Are they a caregiver? Are they in grief? One of the most important mantras for me has been that it is incredibly difficult to be a caregiver, AND it is incredibly difficult to need a caregiver. As I have taken steps forward, I have found that the costs have also brought the rewards of insight and motivation to support others. So much comes down to kindness without judgment.
I am grateful to Manhattan Theatre Club for producing this beautiful piece of theater and to the immensely talented cast for performances that will stay with me. I hope that the theater community continues to tell these stories. The fact that the cast included members who know and have lived the experience heightened the power of the play. It is my hope that this kind of diversity will also continue to spread throughout the theater and arts community. It will be my honor to attend and cry in support, compassion and, solidarity.
It is time once again to brace for another school year. Summer is a time filled with so many difficult memories, particularly Ben’s last summer spent in the hospital. As excited as I am to end each school year, there has always been a bit of dread because I know that I will be haunted by those memories. Each new school year has conjured memories of my often unsuccessful attempts to balance full-time caregiving with full-time work. The quote that always gives me pause was said by Cinderella’s Fairy Godmother in the 2015 Live Action version of the film: “Time passed, and pain turned to memory.” Seven years later, I can say that the pain is still felt. It is felt differently, and is not as debilitating, but particularly on milestone dates, and at times like summer and the beginning of a new school year, the memories are still gutting. However, for the first summer in seven years, I felt like a whole person, and I gave myself permission to feel alive. As much as I lament crossing the threshold to another school year, I hope that I do not allow school to defeat my spirit!
Maybe because I underwent my own medical issues with cancer treatment over the past year, I was intent on following doctors’ orders to relax and enjoy my summer. I made plans that excited me, traveled for the first time since the pandemic and visited some of my very favorite people. I felt like I had come into my own, doing things that I love, happy when they honored Ben and our relationship, and feeling comfort at looking at things through his eyes, but not doing anything solely for that purpose. For the first time, I realized that although I will always feel heartbreak that Ben was cheated of so much time, and that we were cheated of our time together, I did not feel guilty about living and finding joy in the fun I planned.
A few years ago, one of the first things I did on my own was fly to the Georgia Aquarium to do animal encounters. It touches my heart very deeply to interact with animals. It was an indescribably moving experience to feed Mara and Gibson, the two baby sea otters I had followed on social media since their rescue; to dance with a sea lion; be kissed by a beluga whale (and even get into the water for it!); and to actually touch a penguin! When I took that trip, there was guilt for enjoying an aquarium without Ben (click for that blog post). There were many tears and there was loneliness, but I took pictures I knew he would have taken, and I mentioned him in every social media post. The only way that I could justify the trip was to make him a part of it. Still, it was a big step to plan and take the trip the Georgia. Of course, it was motivated by my love of animals and fascination with the aquarium I had read about for years. But, it opened my eyes to how much it means to me to be around animals.
The pandemic made most animal encounters impossible and, at least for me, travel was out of the question. While I was undergoing cancer treatment, I made a decision that this was going to be a summer that brought me back to the people I missed and that nurtured my profound love of and connection to animals. Turtles and penguins were precious to Ben and me, but my deep passion for animals goes back to my childhood and was instilled in me by my parents. Central Park is a place that I love because it is so beautiful and peaceful, and it was indeed healing during daily visits after radiation, but I am most delighted that I have developed relationships with the squirrels that I feed. I feel protected by the cardinals and am very proud that I even developed a relationship with some blue jays, who have learned that if they do not steal the food from the squirrels, I will give them their own peanuts.
For years, I had read about an animal sanctuary called Nurtured by Nature, where you can swim with river otters. Otters are my favorite animals- sea or river otters. Swimming with them was my dream, and it was also a place that was always booked. I finally saw some available slots and Ruth, my very best and oldest friend, humored my desire and drove us to this secluded but almost enchanting location. While Ruth definitely would not like Fairy Godmother or any other Disney-ish status, she made my dream come true. The otters were so playful, curious and as cute, and being face to face with them was more delightful than I even imagined. We also got to meet and feed a capybara, armadillos, kangaroos and a ruffed lemur. The experience of being with the animals is so emotional it brings me to tears. Ruth has been there for me in the many good and bad times, and she was the person I trusted with my medical information and to talk to my doctors, so it was a particular delight to share this positive and whimsical experience with her.
To learn more about Nurtured by Nature, click here. It is a wonderful not-for-profit organization that provides unique experiences to children in need and their families, often partnering with Make-A-Wish.
Ruth surprised me with more unforgettable animal encounters at another amazing sanctuary called Wildlife Learning Center. We met and fed a bunch of darling animals including sloths, porcupines and tortoises. I was happy to learn that the Pixar folks used the resident sloth, Sid, as the model for Flash in Zootopia. They also used the Fennec fox as a model for the film, but he was hiding during our visit, which was a shame because fennec foxes are quite cute and I always appreciate a good Disney reference. I even got to hold a hedgehog, something I have been wanting to do! Scrabble was much more prickly than I expected but such a tiny, sweet hedgehog!
I have read for years about the San Diego Zoo and Safari Park, and they were magnificent. I saw my first live koalas, which was a tremendous thrill. Koalas have been favorite animals of mine since childhood, and they are probably the main reason that I want to visit Australia. I want to hug them! We saw so many stunning animals and I fed some giraffes, which was great fun, because they are such gorgeous and elegant animals, and their very long black tongues are funny and oh so strong! I cannot pass up any opportunity to get up close and personal with an animal. Well, not birds. Definitely not birds.
Our animal adventures continued at the Monterey Bay Aquarium, which was beautiful but a bit disappointing in that there were not many animals out in the Bay. I expected to see a lot of sea otters, in particular, and I think I might have seen one. I was told that kayakers do not follow rules, go into the kelp beds, and scare away the otters. How sad! The resident otters were great fun to watch in their habitat and I was able to capture their antics on film.
Ruth also surprised me with a visit to see the elephant seals at Piedras Blancas. What an extraordinary sight to see so many massive adult male elephant seals and young seals- lounging on the beach or bullying each other! The females had already headed back to Alaska and soon these fellows and their kids would follow them.
I must add that although animals were the running theme of our holiday, the other highlights included the Academy of Motion Pictures Museum (I saw one of Cher’s outfits there!), the La Brea Tar Pits and Solvang, the Danish capital of America. Throughout my visit I thought of Ben and how he would have enjoyed these experiences, and how much fun we would have had. Actually, my dad really would have loved to be there, because it was like living the National Geographic articles we shared. At the same time, and for the first time in seven years, I seemed to be fully myself, immersed in animal adventures that I discovered truly fueled me and were not about Ben or us. It was enough of an unusual sensation that it did register with me, but it did not make me sad or guilty, which was also a first. I chalk it up to yet another phase of grief to accept that Ben is always in my heart, but I can and will evolve and redefine myself, wholeheartedly delving into my life and maybe even discovering new joys. Little things can have big significance, and I am proud that I was emotionally ready to add to Ben’s and my Disney collection of mugs a new and fabulous sea otter mug from the Aquarium. I have used it every morning since I returned, and it shows me that, like the rest of my life, my Ben memories will intertwine with my new memories.
I am grateful that I returned from California feeling invigorated and inspired. I have been working on a few picture book ideas, and I completed the third draft of my caregiving memoir/workbook. I earned my certification as a grief support facilitator and look forward to supporting caregivers and those in various stages of grief. I do allow the undertow of grief to immerse me in the sadness and aloneness that I feel at times. Still, it feels good to know that I have grown to be more productive and that I feel more of a sense of direction, albeit with a lot of anxiety that I am trying to manage. Of course, as I reach to follow these new dreams, it is even more difficult to return to school. Although it is not where I want to be, I remind myself of my club, and it is my hope that I will continue to reach caregiving kids. This is where I will find the fulfillment that I need and that, frankly, can feed my desire for growth in a way that teaching, or the school system, more to the point, does not.
It stands to reason that after my animal adventures, I felt compelled to watch Zootopia. I was struck by the quote byChief Bogo: Life isn’t some cartoon musical where you sing a little song and all your insipid dreams magically come true. Chief Bogo was right. It reminds me of a quote by Walt Disney, who said, “Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.” While some might say it is childish and naïve, ALS, cancer, caregiving, and loss made me very well aware of life’s grim realities. A wave of the wand would not make my troubles disappear. However, Disney has helped me through some very dark times. It inspired and comforted me during caregiving and throughout grief. Disney helped me escape and to make sense of things that were happening. Disney helps me to understand my grief and has inspired me to look inside myself and push towards pursuing dreams like animal encounters and writing, which give me a sense of fulfillment. It does take time and effort to balance the light and shadows and to temper the struggles with growth and positivity.
As the beginning of the school year looms, I remember how I was known by my former school staff as Abby who ran in circles trying to take care of her dad and her husband and then who lost both of them. I remember that despite being relieved (for several reasons) that with my position in a new school I was able to shed that persona, I struggled that new people really did not know who I was, because those years, although the most challenging and heartbreaking, really represented the most important and meaningful time in my life. Now, some teachers know my story and others do not, and all of that is okay. I feel like I am again getting to know myself better and writing new chapters. I hope that reflections will always result in my being a new and improved version of myself and that, even if it takes time and there are shadows, that I can and will work to make my dreams come true. I take comfort in knowing that my dad and Ben, along with all my other loved ones, are watching and supporting me along the way. That said, an insipid song sung by a Fairy Godmother would be a good idea right about now!
Yesterday marked seven years since you left the world. As always, this time is filled with such difficult memories. I do not know what seven years of grief should feel like. I would never venture to suggest to anyone else experiencing grief what it should be like. I only know what I feel. I sat in our bedroom remembering our last night together in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. But, it also still hurts me to my core.
I never know how I am going to feel on August 26, but my plan was to go to Central Park to bring watermelon to the turtles. I know you would like that, and I know that I feel you with me when I am there. After that, I would watch the new Pixar film, Lightyear, which I know you would have been excited about because of your love of Buzz.
The turtles were delighted with the watermelon, and I had my walk and cry. Central Park is very healing and peaceful for me. I listened to my Ben Playlist and immersed myself in memories. I also let the squirrels cheer me up and I fed them an assortment of hazelnuts, walnuts and peanuts. That is something that has come to bring me a lot of joy.
Unfortunately, it was also unbearably hot and humid. It reminded me of your last summer, when even as I left the hospital, sometimes in the middle of the night, it had not cooled down at all. I could not make the walk home from the Park and resorted to a taxi for just a few blocks. I came home feeling physically and emotionally awful. Perfect timing, I suppose. Lying on the sofa for hours seemed like the old days of immobilizing grief. I am glad and relieved that I recognized that I was not returning to that place. But, if I was having a setback, I would simply allow myself to have my moment.
After a while, I did watch Lightyear. Something that helps me when I miss you and feel that you have been cheated of an experience is to try to see and feel things through your eyes. So, I watched the film through your eyes. It began much as your treasured Star Trek episodes, with Buzz narrating just as Captain Kirk did. I cried as I laughed out loud and turned to your chair, commenting to you. I cannot deny that it breaks my heart that you are not here to see the film, even if your spirit is present, but I do feel like we are somehow together.
I think you would be really happy with the film. Although it is not Buzz as we know him from the Toy Story films, I think you would say that it was clever that a film was made about the Buzz that led to his beloved action figure. It has the science fiction aspects that you would get a kick out of, particularly because of the Star Trek kind of references. Buzz has to deal with I.V.A.N., the Internal Voice Activated Navigator, which is autopilot with a series of useless recordings like those that we all know and dread. It also reminded me of the things that were repeated ad nauseum by medical and other professionals that you never wanted to hear, denied and defied. They were infuriating but sometimes made us laugh.
There are also important messages that touched my heart about grief and the passing of time. Buzz keeps reliving a travel plan, and for him time barely moves, but those around him age and pass away. He has to decide if and how to pursue his mission- to stay where he is or to keep trying to solve the scientific dilemma. Staying where he is would allow him to live and age with the people he knows. As he sees time pass without him, at one point, he meets an older version of himself. Imagine looking at how your life and decisions play out. Imagine not being happy about it. Buzz also has the option of going back in time, though that would also remove some of the people he loved and knew in the life he did live. Throughout all of this, he is watching others live out their full lives in what we consider a normal sequence. I thought of you. You were cheated of a long and healthy life. We were cheated of growing old together.
If it was possible, should we go back in time? Or, jump ahead to see what happens and then maybe even go back and change things? I wish you were here. I wish you never had ALS. But, if we could go back to before your diagnosis, would it mean that you would not get it anyway? What else would change in terms of people, relationships and shared journeys? As things turned out, I am grateful that we had the opportunity to grow very close and say the things that were important and needed to be said. Maybe things just have to happen the way they do, even though they are not as we envision the story and without a necessarily “happy” ending. I have no answer.
Ultimately, Buzz and his crew want to know that they matter because of the missions they undertake. Please know that you mattered. You STILL matter. You are a part of everything that I do. Your experience with ALS led me to support other caregivers. It encouraged me to follow my passion for writing, which has opened new doors for me. It inspired me to find ways to build and nurture a caring community in school. It was hard to face breast cancer without you, but you, and our journey, did help to guide me. Although I still have a hard time embracing it, you let me know that I am braver than I believe, stronger than I seem and smarter than I think. I wish you were here to actually be a part of my life as it unfolds, twists and turns, yet you are central to all of it.
As is my ritual, I read through each anniversary blog post that I have written since the first year after you left. I see that I am purposeful about honoring you, while gaining more control over my own life. I remain reflective, and frankly, I think that is a good thing. I still do watch the video that I made on that first year. And, I made Mickey Mouse waffles, which make me smile because of how much you loved them. Also, because the waffle maker was a gift from a very lovely former student who knew and cared about the significance of waffles in our story. I was very pleased with my plan of visiting and feeding our turtles and watching Lightyear, because it was a way to honor you and us, and to do something new while still looking through your eyes. Yes, I do feel lonely, but I also know that you are always here for me.
After Lightyear, Tinker Bell and I sat with your Sullys and watched Monsters, Inc. I will never fail to be moved when Sully places that one last piece of the door that will let him see Boo again. I wish I could have that moment, but I know that you are always with me, and I am so thankful for the time that we had.
Ironically, though of course I live and breathe Disney quotes to make sense of life and loss, it was seeing Bruce Springsteen on Broadway last year on the sixth anniversary of your leaving that has had a tremendous impact on me (click here for more). I have reminded myself countless times of when Bruce talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. Bruce really helped me. These milestone dates are times that I visit with you, and they are difficult days. More importantly, now, you are the grim, grinning ghost whom I know with certainty is always haunting me, in a good way!
Now that you are free from ALS, I hope that you are running, eating and making music. I love you and I miss you every day.
You’ve got a friend in me You’ve got a friend in me When the road looks rough ahead And you’re miles and miles from your nice warm bed You just remember what your old pal said Boy, you’ve got a friend in me Yeah, you’ve got a friend in me
You’ve got a friend in me You’ve got a friend in me You’ve got troubles, and I’ve got ’em too There isn’t anything I wouldn’t do for you We stick together and we see it through ‘Cause you’ve got a friend in me You’ve got a friend in me
Some other folks might be a little bit smarter than I am Bigger and stronger too, maybe But none of them will ever love you the way I do It’s me and you, boy
And as the years go by Our friendship will never die You’re gonna see, it’s our destiny You’ve got a friend in me You’ve got a friend in me You’ve got a friend in me
Since today is International Day of Friendship, I’ve been thinking about the lyrics to the song You’ve Got A Friend In Me from Toy Story.
The song applies to so many aspects of my life. It is almost a caregiving anthem. I was there for Ben no matter what, seeing him through the darkest days. As the song says, there might have been stronger or smarter people, but the love we had was stronger than those qualities. As Ben was more vulnerable and more dependent on me for help, I know that he worried that I would say that I could or would no longer be able to take care of him. In his heart, though, when the road looked rough ahead, Ben knew that I would never leave him and that no one would ever love or care for him the way that I did. The unique bond we shared in our romance, despite the tragic circumstances, was a supreme kind of friendship.
Friendships can help to sustain us. I consider myself fortunate to have known my best friend for more than 50 years and to have had my closest friends for much of my life. We have been there for each other through the good and bad times. Sadly, over the past several years, I feel like I needed my friends often- as my dad became more ill and as Ben’s ALS progressed, and then, of course, as I grieved their loss. My patient and devoted friends listened to me repeat the same issues without any resolutions, and despite any opinions they held, they did not give up on me or Ben. They were also there to help Ben, being my backup if he needed assistance when I was with my dad. They voiced their concern for me. They asked what they could do for us. I knew that, as the song says, “there isn’t anything I wouldn’t do” was the way my friends felt about me, and it was and is mutual. I always placed a high priority on being there for my friends, but I still was not happy being on the receiving end of the giving during this time. At the same time, it was a huge comfort to know that I could depend on my friends, and it is beyond heartwarming to see them cheering for me as I have more steadily and confidently moved forward.
Sometimes friendships last forever, sometimes they are brief but deep. Sometimes we make connections that touch our lives although they are not even actual friendships. When I was the caregiver for my dad and Ben, I experienced all of these relationships. There were the people who unexpectedly reached out with a kind word or helpful gesture. There were people whom I did not know very well who had helpful insight, were there to talk at just the right moment, or were simply genuine in their expressions of concern. There were even people I did not know well who were kind enough to keep Ben in their hearts and do the Ice Bucket Challenge or contribute to ALS causes and our fundraisers with their families in Ben’s honor. I will forever be grateful for those moments and people. It’s an important reminder of optimism and faith in humanity.
Friendships also shift over time, even during good times, and that’s natural. People relocate, they get involved with different activities, have families. Terminal illness and my caregiving definitely caused a shift that forced me to evaluate what I considered good friendships. Some people whom I thought were good friends proved to be terribly disappointing. These are the people who said they never called because they knew I was busy, or who did not really ask much but were extremely judgmental. They were people who wrote lots of niceties on social media but never actually reached out or demonstrated friendship.
There were also people who, when we did communicate, would tell me that they knew they weren’t being good friends, seeming to want me to excuse them. At first, I did console them and say that I knew they were thinking of us and would have been there if I’d asked. Eventually though, I felt no sense of responsibility to make them feel that they were great friends because it simply wasn’t true. I felt abandoned when I needed to feel friendship. I suppose I could have reached out and asked for help or support or just a friendly conversation to help me feel like I was connected to my life and friends beyond my caregiving world. It’s hard to do that when you’re feeling overwhelmed by life. That would have been a way to care for myself but I was not up to it. I needed people to step up to me. When they didn’t, it was hard to accept that I simply didn’t fit into the lives of some friends the way I wished or expected. In many cases, I have remained friends with these people, but I do not feel the connection that I used to feel.
Ben also struggled with friendships as his ALS progressed. There were a handful of people who were loyal to him throughout his illness. ALS is known to be an isolating disease and, indeed, a person with ALS (pALS) loses the ability to easily communicate. Ben managed to text through his computer. His speech became impaired and if it was too difficult for him to be understood, he gave up trying. The number of people who reached out to him steadily dwindled. He felt unimportant and abandoned, which was heartbreaking.
We’ve heard the expression that to have a friend you have to be a friend. Friendship is a beautiful gift to give and receive. I do have to remind myself that everyone has their own definitions of friendship and people form friendships for a variety of reasons with many different expectations of giving and receiving friendship. Some people need their friends during difficult times and others withdraw. It’s also important to see a big picture: as I needed more than I could give while my dad and Ben were ill, my friends might have those experiences as well. We cannot always be there for each other. What we can do is communicate openly, honestly, and compassionately.
Given all of these experiences, I had to make decisions about the friends with whom I would share my breast cancer diagnosis and treatment information. Although probably well intended, I did not share information that I felt would yield little more than social media emojis. I did not want to be defined by my diagnosis and I did not want to have to answer a lot of questions, hear unsolicited advice or feed anyone’s idle curiosity. I did not want anyone to feel obligated to follow up with me, either. Again, I am fortunate that I could turn to and rely on a wonderful circle of devoted friends.
It’s not always easy to know how to be the best friend you can be. Sometimes, in the case of someone who is caregiving or who is ill, it means asking how you can be a good friend, or just being genuinely present and available to listen, validate and comfort, or to let your friend know that you are giving them the space they seem to want but that you are there for them when and if they are ready for you. Not long ago, I compiled a list of things that you can do to help a caregiver. You can find that by clicking here.
Through our actions and expressions of love and support, I believe and am so very grateful that my dear friends and I agree that And as the years go by Our friendship will never die You’re gonna see, it’s our destiny You’ve got a friend in me.
If you are feeling lonely, I hope that you will reach out here, or on this blog’s Facebook page. There are also many online support groups- even on Facebook. Feel free to email and I will try to direct you to resources.
Today, here in America, it is July 4th, or Independence Day. Although I try not to delve into politics in this blog, unfortunately, this holiday makes it impossible to ignore current events. In our current, repressive political climate, I personally cannot bring myself to participate in any festivities. I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.
We take our independence for granted in so many ways, but now, independence is a concept that is being seriously challenged as our rights, and those of our loved ones and other citizens, are being reconsidered and revoked in a way that makes my country feel almost unrecognizable to me. Sadly, I watched my dad lose his independence as he aged and struggled with cancer, and I saw Ben lose his independence as he succumbed to ALS. Losing independence is hard to handle physically, legally, politically, and emotionally.
My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.
Ben dealt with a loss of independence as ALS stripped more and more of his abilities. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.
Imagine the loss of all of those abilities that we take for granted. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about. He tried hard to avoid, for as long as possible, his loss of independence.
As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly seven years later, am I more comfortable with my independence. Still, I blog and maintain my deep connection to caregivers and people with ALS. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.
Today is also the anniversary of Lou Gehrig’s famous speech, when he noted that “I might’ve been given a bad break, but I’ve got an awful lot to live for,” and he was “the luckiest Man on the face of the earth.” In a very public way, he lost his independence and the ability to continue his career. On a positive note, what great perspective and lessons in humanity and gratitude he left as his legacy!
Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. I was raised to be a patriot, grateful for our independence. I hope that we will be able to win the fight to preserve those values that are currently under attack and being chipped away. I do fear for their potential impact on the medical care and research that strives to help make ALS more manageable and, ultimately, eradicate this cruel disease and other horrible illnesses. I hope that legislation will progress that will support caregivers. In my practical way, I contribute, through donations, volunteering and the raising of awareness about ALS and caregiving. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases and hope that this country wields its superpowers and that good triumphs over evil.