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.
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.
May is ALS Awareness month and despite the popularity of the Ice Bucket Challenge, it still is not a well-known or understood disease. In this post, in my Disney way, I want to do a little more to describe the progression of ALS as Ben expressed his experience and as I witnessed it.
ALS/Lou Gehrig’s disease, is defined as a disease which causes the death of neurons that control voluntary muscles. My friends and family became aware of the physical effects of the disease primarily through Ben’s experience. Ben’s first symptoms were a lack of balance and falling. His legs also became tired very quickly. As the disease progressed, he lost the ability to use his legs at all, and then his arms and hands, then chewing and swallowing became difficult, and his speech became increasingly impaired as he experienced those muscle losses. His cognitive skills were not affected, so he was completely aware of what was happening to his body. The progression of ALS varies from person to person, so, for example, some people may never lose their ability to walk, others lose their ability to speak first, while Ben lost it last. Eventually, the ability to breathe is lost, and that is often the cause of death from the disease.
This scene from Disney’s The Little Mermaid was poignant to me within the context of ALS. Ariel wanted so much to be a human and to be with Prince Eric that she was willing to relinquish her voice to the sea witch, Ursula. Ariel knew that her voice was integral to who she was, but she was in love, and you know how that goes, especially in a Disney film. Once she gives her voice to Ursula, she quickly realizes that she has lost the ability to express herself, and her ability to sing, which was so important to her. She also did not realize that without her voice, she was no longer recognizable to Prince Eric. Of course, she made a choice. Someone with ALS does not get a choice, and I would venture to guess that they would advise her to keep her precious voice.
The Magic Kingdom at Walt Disney World- 2001. Pre-ALS days
The loss of easy communication was very frustrating to Ben. First, phone use became difficult because handling the phone was hard and it was difficult to understand him. We then began frequent texting. Ben used a virtual/on-screen keyboard and an app that connected his phone to the computer screen. However, if his hand slid off the mouse, communication was cut off and that led to some very tense moments.
Living with Ben, I was more likely to understand what he said and I could facilitate conversations with others. There were times, however, that I could not understand him. He would shake his head and tell me to “forget it,” which upset both of us. When communication was an obstacle and he was homebound, Ben did notice and lament that he had less contact with people. Friends and relatives with whom he thought he was close stopped reaching out, or, they made promises to visit that they did not keep. At the same time, he did not really want people to see him as he looked. He did not want them to see him looking gaunt and struggling to talk, eat and move. It did leave him feeling isolated and hurt.
When strangers did not understand Ben, they sometimes assumed that he was mentally challenged and spoke to him like a child or addressed only me. Often, Ben laughed about it, but on some occasions he felt invisible and very misunderstood. So, I involved Ben in the discussions to show people that Ben was fully capable of understanding and had lots of opinions and many people did follow my lead. As caregivers and loved ones, I see it as our responsibility to educate people through example, because some people are willing but not quite sure how to engage with people with a variety of disabilities. Unfortunately, not being able to say what he wanted and be truly seen and heard sometimes caused Ben to withdraw. I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself.
After a respiratory crisis landed Ben in the hospital, he had a Bipap mask before he had the tracheostomy. This was the first time that Ben really had absolutely no voice. He could not call me, or call for help, or just have a conversation. On an emotional note, he could not kiss me or tell me he loved me. When I recently re-watched The Little Mermaid and I saw Ariel panic the first time she tried to speak and remembered that she could no longer do so, I remembered Ben’s panic at the thought that he could not easily get someone’s attention with is voice, but he also could not use a hospital call button. Ben was afraid to be alone in the hospital room and I was afraid when he was alone. The mask obscured his mouth, so reading his lips was also very difficult. We spelled out words by my reciting the alphabet and his nodding when I reached the correct letter. However, the length and tediousness of that process frustrated him, and he began to weigh what he really needed to say. There were many incidents when hospital staff ignored Ben and asked me questions that he could answer. I immediately addressed those questions to him so that he could participate in the discussion. Yes, it took longer, and it was not easy, but he mattered, and staff had to accept that. Most really were wonderful, and they got a glimpse of who Ben really was beneath the ALS. But, just as Ariel felt devastated that Prince Eric did not recognize her, Ben, too, felt that he was becoming unrecognizable, even to himself. It also made him look at how he saw himself moving forward, which was something he had tried to avoid since his diagnosis nearly six years earlier.
Ursula tells Ariel that even without her voice, she has her looks, and to “never underestimate the importance of body language.” Unfortunately, with ALS, Ben could not rely on body language. He certainly did not underestimate its importance. ALS slowly strips away a person’s ability to move their limbs and even make facial expressions. Although Ben’s experience with ALS never progressed to the point where he was completely immobilized, some people are left only with the ability to blink, if that. Without a voice or facial and body expressions, a person would understandably feel isolated and even irrelevant. Although visits from loved ones are appreciated, they are not easy, so, unfortunately, as in Ben’s case, visits become less frequent.
Walt Disney World, 2001
Ben could certainly have related to Ariel’s wish to have legs like a human. As he lost his ability to walk, he often told me that in his dreams he always saw himself walking and running. As Ben lost his abilities to walk and move his arms and hands, he saw himself as weak and self-conscious. He missed going outside and playing handball. He did enjoy using his scooter, but daily life skills were becoming impossible and that carries an emotional toll. He walked until he accepted that his legs could not handle a single step without his sinking to the ground. That took away his freedom to move around the apartment. It chipped away at his dignity to have to be transferred to and from the bed, his chair and the commode, and to have to be fed his meals. He often denied that he needed as much assistance as he did, which was stressful for me as his caregiver, but that was what he needed to tell himself to deny that ALS was progressing.
Ben was also aggravated that he could no longer do things that he loved to do, like play music on his keyboard and fix computers. He could still talk me through what needed to be done with the computer hardware, but it was not the same. He also continued to research and discover adaptive electronic and computer devices, though they rarely worked for long, as new symptoms of ALS constantly appeared that rendered them ineffective. Music always remained an essential part of Ben’s life and our relationship, and although he couldn’t play his instruments, and we could no longer dance, he never stopped listening to music and making little videos with music clips for me to celebrate different occasions. I also brought his iPad to the hospital, so he could always listen to his favorite tunes.
Body language encompasses body image. ALS seriously impacted on Ben’s body image. He said that he did not like to look at himself in mirrors. As eating became more challenging, Ben lost a lot of weight. His feet got terribly swollen and even the widest shoes did not fit, so he wore adjustable slippers. He could no longer shave himself and although he said I did a pretty good job, I did not do as perfect a job as he did. We could make it fun and funny, but the underlying issue- the deterioration of his muscles- was frightening and tragic. At one point, his aide shaved his beard and left only his mustache. He was a bit insulted that it took me a while to notice exactly what was different. I think that I somewhat tuned out the physical because there were simply so many changes, and they were too sad to dwell upon. Ben, on the other hand, regularly studied the photos from our visits to Walt Disney World and compared his physical changes from visit to visit. In fact, when I showed pictures of those visits to friends, they always commented on how thin Ben had become, shocked by his physical transformation. When I looked at the photos, I saw only the joy on his face. I guess that’s the Pollyanna in me.
Fortunately for Ariel, she was surrounded by people (well, mer-people and some very adorable sea friends) who loved and looked out for her. Sebastian was an astute and compassionate, if high-strung, caregiver. Nutty but devoted Scuttle revealed Ursula’s evil magical trick to get Eric and Ariel’s voice was restored, she was able to keep her legs and marry the Prince. There was the Disney happy ending.
ALS is not a fictional magical trick, rather, it is a cruel disease to which Ben ultimately succumbed. Still, despite the obvious devastation of his struggle and of losing him, I have to look at the end of Ben’s ALS story with some positive thoughts. Ben’s personality shone as he left this world, according to the very wishes that he expressed, even without his voice, embraced by people he loved and requested to be present, and with music that filled his heart. He was heard and he knew that he mattered and was loved, as his hero Buzz Lightyear said, “to infinity and beyond.”
Now, I use my voice to spread awareness and support caregivers and people with ALS. And, in my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS.
“I can’t go back to yesterday, because I was a different person then.”- Alice Click To Tweet
I saw this quote with an image from the Walt Disney Productions animated film, as I’ve done here. In fact, it is from the book by Lewis Carroll. Still, it’s a great quote that I could relate to, particularly after my caregiving experiences. Intrigued by the quote, I re-watched the original 1951 version of Alice in Wonderland and the 2010 live action remake. Although I have to admit that they are not among my favorite Disney films, there is a lot of wisdom and insight, as well as some welcome sarcasm, that helped me reflect on the impact of caregiving on my relationship with myself and with others. It continues to resonate as I reshape my life and realize that all of those experiences have in some ways changed me.
“I’ve been accused of being Alice and not of being Alice but this is my dream. I’ll decide where it goes from here.- Alice Click To Tweet
My dad’s cancer diagnosis and then Ben’s diagnosis of ALS plunged me down a rabbit hole, alone, devastated and confused. I wanted to be the little girl who was taken care of, but suddenly I had to deal with very adult realities and take care of my loved ones. The teams treating my dad and Ben gave me instructions and details that sometimes tugged at my own beliefs and my emotions. Especially difficult was taking on the role of parent with my own parent. Instead of being the child protected by my dad, I found myself fighting his negative attitude and working with doctors and nurses to make important decisions for his treatment plan while convincing him to comply with orders because he could have a good quality of life. While ordinarily soft-spoken and shy, I learned that I could be a fierce and resourceful advocate. I was insistent and relentless when it came to getting the most appropriate services for my dad and for Ben. There was a lot of information and I was given a lot of advice, and I frequently felt out of control. There were so many people- professionals and people close to me- telling me what I “had” to do and how I had to deal with things and, when I was spiraling downward, I very easily took direction. But, there were also times that I felt like I could take the reins and make my own decisions. At those times, I did what I felt was necessary, regardless of judgments and disagreements, second guessing myself all the way. That was not always easy for the people I had relied on who were used to directing me, especially those people who naturally like to take control and give direction (I do wish I was a little bit more like that!).
As difficult as it was for some people to see me making more of my own decisions and taking a stand, it was hard for me to change my own self-perception. It was also hard for me to say no to people, or to express my disagreement. I listened politely, even if I did not heed the advice, because I did not even have the inner strength to disagree. I guess I generally fall into the category of “people pleaser.” To be fair, I believe that people had our best interests at heart and I appreciated that. But, as I saw myself successfully handling more caregiving responsibilities, and my dad and Ben became more and more reliant upon me as I gained better understanding of their feelings, I felt my confidence growing, and with that came a growing resistance, accompanied by some discomfort, to automatically complying with what I was told I “had to” or “should” do.
Tapping new sides of myself- stronger, more vocal, more responsible- definitely has come with growing pains. The “Abby” I was most familiar with was compassionate and caring, but also emotional, indecisive and insecure. Suddenly, I was able to see myself as braver and more assertive. Who was this person? I was always someone who second-guessed myself and relied on the opinions of my friends and family. I valued and depended on them and still value their thoughts. But, I also learned that I have to go with my gut sometimes and I can stand my ground. Learning to trust myself has not been an easy process for me, and it has not been easy for some of the people who became used to nudging me forward.
I still struggle with who “Abby” is, although starting at a new school last September gave me an opportunity to completely reinvent myself. Some of my struggle has been that I am no longer the person I most related to- a caregiver, and I did not want to introduce and define myself as being in grief, though it was what I felt most strongly within me.
“That’s the trouble with me: I give myself very good advice, but I very seldom follow it.”- Alice Click To Tweet
As Ben’s ALS progressed, and things became much more difficult than Ben was willing to admit, I was frustrated and overwhelmed, and also resentful. I was struggling with those feelings because Ben was dying and I felt that if he wanted to live in denial, then I had to live there with him. I gave myself all sorts of advice, having internal dialogues about insisting on more paid help, requiring Ben to prepare legal documents to make other important arrangements, and making scheduling changes that might have made daily life more tolerable. I had a lot of good ideas! But, I rarely followed my own advice. At times, I got angry at myself and felt helpless and defeated. I’m sure that it frustrated people who cared about me to see me drowning as I had a good sense of what needed to be done but lacked the emotional ability, or, to be honest, the actual capacity, to make it happen. I have thought about that a lot, and, to this day, although I know that a lot was not right about the situation, I know that Ben felt cared for, protected, and loved. Sadly, I achieved that by often ignoring my own good advice.
I cannot begin to count the number of times I wished that something in my life would make sense. Juggling caregiving for my dad and Ben would have been comical if it was not so serious. There were middle of the night calls from my dad when he was deciding if he should go to the emergency room. If he went, I would ensure that Ben would be okay and arrange back-up if he needed help, and then I would meet my dad at the hospital. From the hospital, there was an endless string of calls and texts to report on my dad and to check on Ben. There were the ridiculous restrictions of what insurance would cover, when clearly ALS is a terminal disease that renders a person needing much care. The insurance issues were there with my dad, too, as I tried to navigate his entitlements without a lot of consistent assistance from the medical teams. There were my klutzy attempts to address the needs of Ben and my dad, which they denied were increasing, while trying not to upset or discourage them. There were the routines we painstakingly created that had to be immediately scrapped because Ben exhibited a new symptom of ALS that rendered the plan useless. We just wanted something to make sense. That never really happened, but we embraced it as our new normal, with a sense of humor when possible.
I do love the whimsy and fantasy of Disney. But, if you follow this blog, you see that there is a lot of inspiration and insight in the films, and it helps me. Although I find comfort in thinking about wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was, for several years, anything but rainbows and magic. As a caregiver, and then in grief, it has been so important for me to surround myself with the things that gave me comfort and let me at least mentally escape. I could get lost in fantasies in the same way that Alice dreamed about creating a world of her own. For Ben and me, Walt Disney World was that special world of our own. Disney films, toys and memories still give me that much needed opportunity to fantasize, but also help me to sort through ugly experiences that come with caregiving and loss. It is so important for caregivers to identify and retreat into the things that provide comfort, insight and perspective, even if it is a momentary escape from the comfort of your sofa. I continue to find inspiration and insights as I look for a new happy ending and search for a new prince.
Here are two great phrases uttered by the March Hare that I wish I had said often, and I pass along to other caregivers, with the hope that it will help you to avoid unnecessary and sometimes downright outrageous conversations with well-intentioned people who are not involved or informed but have a lot of bad advice that they are eager to spout.
OK, you might want to say that more tactfully, but think it just like this and at least you’ll have a chuckle in your head!
As I emerge from grief, I don’t always recognize myself or know exactly who I am or who I want to be. I feel like I’ve changed. But, I can finally say with some pride that, despite my tears, I faced and handled some very difficult situations with and on behalf of Ben and my dad as they took their journeys from this world. I also challenged myself and learned that I can be strong and brave, I just do it with a lot of tears! There were times of conflict with family and friends, but I honored the wishes of my dad and Ben, and I did what I believed was best and was most consistent with their wishes.
I know that my loved ones have always wanted the best for me and that means the world to me. But I also realize that as much as I have gratefully relied on others to guide me when I run in circles, I have to move forward at my own pace, shaping and fulfilling my own dreams on my own terms. I have to determine where I want my life to go. And, I am fortunate that I am surrounded by people who are cheering me on. I do have some inner struggles, and, in a few cases, relationships that I do care about have been strained and tested, and that has not been easy. But, as the White Queen said to Alice, “You cannot live your life to please others. The choice must be yours, because when you step out to face that creature, you will step out alone.” This was also true for Ben and my dad as they faced death, and it is true for all of us.
In the live action Alice in Wonderland, Alice must slay the Jabberwocky to defeat the evil Red Queen. As caregivers, we have our own Jabberwocky to defeat, as we tackle trying circumstances and help our carees battle the demoralizing and painful effects of illness. Though we cannot defeat death, we are fierce in our battle to slay many obstacles and provide as good a quality of life as possible for the carees whom we love. Then, grief becomes our Jabberwocky, and we slay it as we learn to co-exist with it and not let it defeat us as we emerge and continue to live in ways that honor the loves we had and lost, and that do justice to ourselves.
If you read this blog regularly, you know that I like to put things in a positive perspective, even while recognizing the challenging and not so pretty aspects of caregiving and the obvious sadness of grief. After all, the bad feelings are normal and I think that embracing them is healthier than suppressing them. That said, seeking professional help or a support group as a way of dealing with them is something that I have done and that I encourage when you’re beginning to wonder if what you’re experiencing is not “normal” (or at least “normal” for you) and is affecting your ability to function.
I take so much comfort and find enlightenment and inspiration from Disney quotes, and they have guided me through caregiving and grief. But, there are always times that “Hakuna matata” has eluded me, and I’m feeling that right now. I know, it is a kind of coping skills anthem, but when I am at the height of anxiety, hearing “Hakuna matata” antagonizes me. It makes me want to summon my inner Scar (click here for that post).
Last week, I was under the weather with a cold, and maybe that has put me in a funk of sadness and anxiety. Walt Disney said “Why worry? If you’ve done the very best you can, worrying won’t make it any better.” While I can’t argue with Walt, I lack his confidence, and I’ve always worried that my best was and is good enough, especially when I was a caregiver. The truth is, I’m a worrier. I have a good sense of humor about it, acknowledging my need to worry as part of my process for sorting through issues and situations.
Of course, when Ben was struggling with ALS, the worries were real, upsetting, and frightening, without any easy solutions. In addition to the harrowing medical and emotional issues, we had to consider financial concerns, such as how we could hire private aides, where he would live and how to arrange his medical insurance and set up his finances to enable him to live with the help and equipment he needed. An added complication with ALS is that its progression is unpredictable. While studies show that most people diagnosed with ALS live two to five years, there are many people who live much longer, and although we wanted him to be here for as long as possible, we wanted that to be with a good quality of life and with financial security and medical coverage. I worried about Ben’s quality of life, particularly in a facility, which would have been inevitable once he was on life support. I did not like to discuss these worries with Ben because I did not want him to worry. I know he did, and sometimes we discussed it in roundabout ways, but we also procrastinated and ignored the elephant in the room. While it did not help to worry, sometimes it was all I could do. I guess it was a form of anticipation, because when the crises arose, I had often already envisioned them! There was no such thing as “Hakuna matata.”
It has been a while since I’ve felt this down and caught up in worries for days at a time. Feeling ill at least gave me a good excuse to sleep all day. Maybe being home with a cold gave me the time to dwell on things that are unsettling to me. I remembered the many times that Ben would show up at my door with chicken soup and comfort foods when I was ill at home. We always did things like that for each other. What began as a wonder is now a worry if I will ever have that again.
I need to remind myself that overall, I have felt like I am making great strides here in the world of the living, coexisting with my memories and the presence of Ben in my life. I am happy at my new school, I see my friends more often, I am frequently at the theater and I even travel. Even though I had some struggles with loneliness during my recent excursion to Washington DC, I am glad that I let myself live that dream of seeing the cherry blossoms in bloom and I continue to marvel at the beauty in the photos that I took, which definitely is something that Ben and I would have done, too. These are new good memories, but they are overshadowed by being memories of myself alone. I feel haunted by reminders that I am alone and I worry that I will always be alone. That set me thinking about how disheartening online dating has been. Will I ever meet someone new, who understood me the way that Ben did? Will I have a future filled with that kind of love? Ben used to love to see elderly couples holding hands and he would say that one day that would be us. As his ALS progressed, we both got emotional when we saw these couples because we knew that it would never be us. I guess I was reminded of that watching coverage of Barbara Bush’s funeral, along with the footage and stories of Barbara Bush and President Bush and their long and beautiful love story. I’m still grateful for the time that Ben and I had and that despite the tragedy, we shared a most special and devoted love in his last weeks in the hospital. Still, we were cheated.
Recently, talking about health care proxies and wills got me thinking about how I don’t have children to take care of these things. I have great friends, and I am so fortunate for that, but I do not have obvious answers to these concerns. When should I retire? Where will I live? How will I live? I’m not naïve. I realize that everyone has to make these difficult decisions and think about these issues, whether they are single or a couple or family. I guess my worry sets in when I wonder if I will be making all of these decisions alone. Mary Poppins is right that, “Worrying won’t help anyone.” Still, I worry. I guess I have not yet adjusted to being on my own and yet, I do, intellectually, know that I will be fine.
I’m always pleased to share that I have been working through grief and still processing the entire caregiving experience with positive and insightful reflections that are not simply Disney whimsy. But, for caregivers who might feel alone in their setbacks and difficult times, I want you to know that these times happen for me, too. It’s not all “Hakuna matata.” I’m okay with that, as much as I wish I didn’t have the struggles. I think that I understand about myself that worrying has always been part of my way of dealing with things, and sadness is bound to happen. The important thing I try to remember is that I’m living, trying, doing and hopefully, creating or revealing a future that will bring me contentment. I never underestimate the little joys in life, and when I’m ready to get out of the funk, a phone call, email, conversation, and the arrival of spring flowers are distractions from worry that are helping to lift my spirits. And, there’s always pixie dust.
Ben at the Animal Kingdom with the Tree of Life in the background. 2006- pre-ALS, carefree and doing his best Ricky Ricardo “Babaloo” impression.
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 
