Thirty Years Without My Mom- Being Brave Like Merida

Today is the thirtieth anniversary of the day I lost my mom. Thirty years. That is a substantial amount of time, and although the overwhelming feelings of devastation have dimmed, this big milestone has come with a sharp pain. Each year, I have written on this day as a tribute to my mom (Click here to see a prior post with my memories). I have posted though laughter and tears the same beautiful memories and relived the same moments. Today, I wonder what my mom would think if she was now here with me, thirty years later. I wonder what she thinks as she watches over me, because I know to the depths of my soul that she does. Am I the person she would want me to be? Am I where we both think I am meant to be?

I have not been able to get my thoughts together enough to write a blog post in more than a month. The holidays came and went with the same struggles. Maybe with this big milestone date on my mind, I was thinking about the passage of time and feeling a bit lost. It did not feel right to me to simply revisit the moments and to feel that time stood still, or even went backwards. Instead, I deeply needed to identify ways in which I have shifted from profound grief and missing people to invoking in new ways and inspirations the wonderful spirits of those I have loved and lost. It almost scared me to examine my life in that context, in case I felt that there was not much growth. Unable to find the words, I just let the thoughts scamper through my head.  I can say that in my experience grief has shifted, and the pangs have grown weaker. Sure, the unexpected waves of sadness and aloneness still set me back. Perhaps confronting a big health issue and waiting to begin my treatment plan infused the season with a bit of melancholy. However, I did celebrate (and have yet to dismantle) my beautifully decorated apartment and glorious new lavender Christmas tree. Once again, I placed Ben’s ornaments and his little Disney tree in the places that made him happy. These began as unnerving activities and have become comforting rituals. I am not as conflicted about placing on the tree new ornaments that represent new, non-Ben memories. I feel like they represent my growing ability to hold dear the old memories but also to savor new experiences, places and people. I still purchase ornaments that Ben would love and that I know will make me smile as I think of him. I think that is okay because I do it from a place of love and not out of a sense of obligation or attempt to step back into and relive the past. I have conversations with Ben, often out loud, about these things. Maybe it is odd, but it helps me. It is also growth over time.

Ben’s favorite ornaments where he would have been able to see them.

Once again, I ordered the same photo calendar of Ben’s and my favorite moments at Walt Disney World. In the past, I wondered if it was good to keep getting the same calendar with those pictures of us. Again, I thought about the context of time and that it has been more than six years. I still assess the things that I do and the way that I deal with my grief, but this calendar is yet another comforting ritual. I did, however, make an important change. Now, next to my calendar, I placed a new photo collage filled with more recent photos with friends, human and otherwise. It never ceases to make me smile to see all those photographs. It fills me with gratitude and with inspiration to know that I have always been surrounded with love.

I am not sure exactly what I expected on this significant milestone of my mom’s passing, but just as I did not want to write the same kind of holiday posts, I knew that I did not want to repost the same tribute to my mom this year. I wanted to look at my life now and to see if I could find my mom in where I am now, not just in the beautiful memories. At the same time, it scared me to try to reflect on that, in case I saw nothing new, no positive revelations, no growth.  I am told that I am too hard on myself, but I cannot help but wonder about the time I have spent over these thirty years. I do know in my heart that my mom remains such a tremendous part of my life. Thirty years later, I believe that I am fortunate and stronger by being able to recount so much love and laughter. I have certainly been through a lot, particularly with Ben and my dad, but am I where I am meant to be?

We were always Mickey Mouse fans!

I talk about my mom very often, even to my students. When we watch Coco and discuss Day of the Dead, I say that although I do not specifically celebrate the holiday, I love the idea that my loved ones are watching me and visit with me, and that I believe that they do. I have had students come to me to discuss their own losses. Keeping my mom in my heart and being open and vulnerable is a tribute to my mom and to our relationship. It also helps others, and helping others defined my mom. Over these thirty years, I have learned that it defines me, too. I am still not exactly sure how, but I do believe that it is part of my destiny.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

This thirty-year milestone seems particularly significant as I have been trying to overcome a lack of confidence to pursue dreams. I am working on a book and exploring ideas for books for children. I am also doing a lot of self-reflection related to this blog and caregiving and what will be fulfilling and meaningful next steps. My mom had so much confidence in me. I must harness that and turn it inward. My club has been one of the greatest achievements. Over the holiday season, I had a proud and loving experience with my club that invoked the spirit of my mom, our bond and our whimsical natures. I took a small group of students from my school club of caring kids to see the Rockefeller Center tree and surrounding store windows and lights. This was something that my mom and I did every year, along with shopping the after-Christmas sales. Over the years of teaching, I learned that so many students who lived right here in the city had never seen the holiday displays. I always wanted to arrange a group to do this and this year I took that opportunity. For some of the students, it was the first time witnessing these absolutely magical sights. Being kids, they were almost as excited about the Lindt chocolate shop on Fifth Avenue as they were about the decorations. Being my mom’s daughter and remembering how she knew every friend’s favorite treats and usually had them at the ready, I treated the kids to chocolate. We all reveled in and videotaped the light show at Saks Fifth Avenue and the kids had fun taking pictures of the sights and each other. It was a truly delightful experience and I love to see their friendships blossom. By creating this club event, I shared a special memory of my mom while creating a new memory that is testament to our relationship. I suspect this will be an annual club tradition and I am thrilled at that thought. I must add here that this event was also emotionally moving for me because I know how happy it would have made my dad. Daddy took such an interest in my students. He often helped me to buy supplies and he chipped in when I helped my students. I often joked with my students that he was trying harder than they were because he watched Spanish language television shows so he could learn Spanish because I was a Spanish teacher! My dad knew that life was difficult for many of the kids and he saw my worry about them because I did bring it home with me. He would have appreciated that I created this joyful opportunity for them that also honored my mom. In fact, it also honored him and his kindness and generosity.

Just before the holiday break, the club participated in our school’s Winter Fair, in which students and clubs sell items that they have made. The club wanted to participate and to raise money not for themselves, but for a local charity. I shared as an idea a successful project that I had done with a group of children at my local ALS chapter. Colorful beads, alphabet beads and beads with inspirational and positive words were strung by the children to make bracelets. It was very touching that some children chose to make a bracelet for their parent with ALS. The club members loved the idea and tweaked it for our event. They created little kits comprised of these kinds of beads and elastic and cord to make either a bracelet or a phone charm. I provided the supplies and they came together after school for a few weeks to make the kits. Some students worked on our social media. Other students created printed display items and inserts for the kits. They coordinated their schedules to ensure that our table was “staffed” throughout the event, and they worked together beautifully. As it turned out, our kits were so popular that we had to improvise to create new items right at the table, inviting students to custom design their own kits! It was heartwarming to see students looking at all the words and responding with smiles to the sweet words that resonated, whether for themselves or for a person to whom they were giving a kit as a gift. The students were so proud to raise one hundred dollars, and they voted to donate the money to Covenant House, a wonderful organization that helps children and families. After the Winter Fair, it was lovely to see many students walking around wearing their bracelets, some commenting on the positive words they chose. Spreading good thoughts and caring for others are beautiful notions I learned from my mom. While my club may be the outgrowth of my experience as a caregiver, my mom instilled in me a caregiving soul. Thirty years and I have discovered new ways that I help Mommy’s spirit live on.

Mommy was the caregiver for our entire extended family, and she was selfless. By observing my mom, I learned how to be a caregiver for my dad and for Ben, but even for many students. I also watched it take an emotional toll on her, though I do not think that I processed all of that until I had my own experiences in caregiving and grief. Although my mom set no boundaries, I like to think that the boundaries I set over the past thirty years with some family gave voice and action to her feelings. On the other hand, my mom was of a generation where family was all that mattered, no matter what. I know that and though it does sometimes leave me a bit uncomfortable, I will never be as selfless as my mom. I hope that when she watches over me, she is content that I have found a loving chosen family of friends that has rallied for me in good and bad times. I am definitely a better advocate for others, but I have learned, particularly in more recent years, to advocate for myself, too. I guess that in this way, my mom’s experience informed my own need for self-preservation.

I know that Mommy would be very upset that I am facing health issues. I also know that, in response, I would be trying to comfort her and convince her that all is well, maybe not even being entirely open about my health. I learned that from her. She always had a smile on her face and was better at doing things for others than for herself. I also learned that from her. She was a care giver at her core and I have in so many ways followed her example. Although it does at times betray my emotions, I am grateful to have inherited my mom’s joyful demeanor.

Merida from Brave said, There are those who say fate is something beyond our command. That destiny is not our own, but I know better. Our fate lives within us, you only have to be brave enough to see it. I was very daunted by this date and even by the thought of  writing this post. I am sometimes my own biggest obstacle as I pursue my dreams. I did not think that had achieved much in this period and was ready to reprimand myself. Actually, as I have written this post, I have found it encouraging to see that over time, I emerged from such deep grief over my mom’s sudden and shocking passing to embrace and share her spirit. In fact, it has helped me to better understand her role in my destiny. I think that I will always assess my actions and my growth, probably too harshly. Maybe I am too old to feel this way, but I still want my mom to be proud of me. Hopefully, the sense of whimsy and belief in Disney magic that I shared with my mom will help me to be brave enough be the person my mom believed I could be, to follow my dreams and to keep discovering and creating new opportunities to grow and to honor the people who gave me so much during their lifetimes.  

Thirty years. I still miss and love you every day, Mommy. And, I thank you.

Embracing Gratitude During and After Caregiving

Today is Thanksgiving. Since I always take comfort in Disney, it stands to reason that I would be drawn to a quote from Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. I had a lovely celebration with dear friends, but that ride home by myself to my apartment remains painful. I don’t know what I would do without the company of Tinker Bell, who is very vocal in her delight to welcome me home.

I know that I am forever changed and influenced by my experiences as a caregiver for Ben and Daddy, and then losing both of them within a short time. Thanksgiving carries a lot of difficult memories for me. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was feeling understandably low about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. I still find myself staring at the turkey gravy display at Trader Joe’s reliving the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to change our view and feel gratitude was indeed a superpower, because it gave us perspective that allowed us to always see the love that was there and be present in the moment. Now, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

In these times, I turn to Mary Poppins, who said in Mary Poppins Returns, “When you change the view from where you stood the things you view will change for good.” As I have worked through my own experiences, I also recognized that many students were also stressed because they were caregivers, either for family members who were ill or even for siblings who they were helping to raise. In my classes, particularly when teaching remotely, I gave voice to students who were struggling with those responsibilities. I began a club at school to support students who were caregivers. The club attracted a group of students who were not necessarily caregivers but were compassionate and caring. Pre-COVID, we raised funds to help the animals affected by the wildfires in Australia. During the pandemic, we conducted remote journaling workshops for teens in residential centers. I shifted the view from where I stood and realized that these were students who wanted to help others and in fact, they were giving care and compassion. They felt good and the feeling spread. I did journaling and other self-care activities with them, and then I helped them to create their own workshops for other students. They supported each other, with advice about school, family and life. I was thrilled to see their friendships blossom. Also, it was inspiring to listen to their discussions focusing on ways to care for others, through activities, fundraising and volunteering.

We had a club “Friendsgiving” at our recent club meeting with apple and pumpkin pies, cookies, candy and beverages. We talked about possible activities and ways that we want to help and bring kindness to each other, students in school and community groups. We talked about gratitude, and how even when things are not going well, finding one tiny thing to be grateful for can spiral into a mindframe of gratitude. I wished them a wonderful holiday weekend and reminded them to do something kind for themselves. That’s not always easy for my students. But, I like to remind them that self-care is also caring.

Yesterday, one of the students in my club brought me this card. It touched my heart more than she could ever know.

It filled me with more gratitude. I am grateful that I was able to form this club and provide a platform for these lovely students to be the giving and thoughtful people they are. I feel oddly grateful that I was able to channel caregiving and grief in a positive and productive way. I would not have conceived of the club without that experience. As I see it, through my club I am paying loving tribute to Ben and my dad. I am reaching out to caregivers with a safe and compassionate environment and nurturing my club members with opportunities to spread kindness, be supportive, encourage self-care, and help others. I am so proud of my students. At a time when teaching could not be more disheartening, I am grateful to find fulfillment through the students in my club and the possibilities of reaching many others.

As always, Walt was right. Being in a state of gratitude has created an awareness of and continuous expansion of things for which to be grateful. So, in that spirit, I would also like to say that I am thankful for those who read my blog posts and share their own experiences with me. I am grateful for the inspiration of caregivers and carees who bravely and innovatively navigate life with ALS and other illnesses.

Happy, healthy and reflective Thanksgiving. Do something kind – however small or large- for yourself.

On Walt Disney, Finding Courage and Being My Own Caregiver

It has been about a month since I have been able to commit words to paper, or keystrokes to keyboard, as it were. I spent the summer doing a lot of introspection. Maybe, on some level, I was inspired by the looming milestone of my 60th birthday and wanting to move towards making some of my wishes come true. Turning sixty is, for me, a notable milestone, but I possess my mother’s strong inner child. In a way, I was looking forward to getting past the age of fifty-nine, since that was the year that my mother died of a sudden, massive heart attack. Fifty-nine did end up having a health scare for me, though, thankfully, I am still here to tell the tale.

As part of my self reflection, I did go down the rabbit hole of reading some self-help books, and I found a couple that truly resonated with me. I also practically meditated on Walt Disney’s inspirational quotes, including “All our dreams can come true, if we have the courage to pursue them,” “First, think. Second, dream. Third, believe. And finally, dare,” and “The way to get started is to quit talking and start doing.”  I committed to these ideals by turning wishes into goals. I finally began to write a book based on my blog that is part memoir and part guided journal for caregivers. I have not yet completed it, but I have loved the process and feel that it will be a heartfelt and valuable book. I also began to explore writing for children, which is also something that I have wanted to do for longer than I can even remember. I took the time to notice how much peace and self-awareness I find in writing and nurturing the sparks of creativity. I struggle with confidence, but I try to focus on doing rather than interrupting the flow with doubt. Where teaching has become a stifling frustration, pursuing other avenues has given me a sense of optimism and fulfillment. I embrace the positivity and that has felt good. The summer felt productive, personally and professionally.

As with so many stories, I experienced a twist of fate towards the end of the summer. After a series of tests and biopsies, a few weeks ago, just before my birthday, I discovered that I am facing a health challenge. I pat myself on the back for being on top of cancer screenings despite my dislike of all things medical. My reward is that the problem was identified very, very early, and I have every reason to believe that I will be absolutely fine. Of course, as with many health problems, it was unexpected and jarring. The outlook and plans that I cultivated over the summer felt shaken and I have had a difficult time summoning the positivity to continue my creative work.

Waiting is always difficult, and when it comes to medical ordeals, I think it is even worse. I am trying very hard to employ my most optimistic mindset despite my Inside Out emotions that are all over the place. Logic tells me that I will do what I must do and will triumph. Emotions tell me that this was not the way I wanted to begin this new decade of my life. With all this swirling around my mind, it was hard for me to even feel “happy” about my birthday. There have been a lot of tears and “what if…” moments going through my mind. I did, however, feel the joy of profound gratitude that I was surrounded by the love of dear friends who wanted to celebrate me, which is usually something beyond my comfort level.

I debated sharing this information here, in such a public way. In fact, I have been reluctant to tell many people. On a cosmic level, I don’t know if I want or am ready to state it for the universe. Ultimately, I felt that caregivers might relate to my experience. Although I do not yet know exactly the full extent of my medical circumstance or treatment plan, my mind keeps drifting to memories of caregiving for Ben and my dad. I wonder what would have happened if this occurred when Ben and my dad still needed me to be their caregiver. I remember that when I broke my shoulder, my biggest worry was how to care for them, and it was a huge relief that Ben was still fairly independent, but I defied medical advice and traveled to visit my dad and drive him to appointments. Interestingly, while I never thought twice about missing school when my dad or Ben needed me, I am already worried about missing school and taking time to care for myself. I am now faced with the fear, confusion and helplessness from which I tried to shield Ben and my dad. I have to question why caring for others is so very different from caring for myself. Don’t caregivers owe it to themselves to care for themselves? My caregiving days are over, but why do I have such trouble accepting that I am now my own caregiver? It is time for me to call upon the fortitude that I showed to Ben and Daddy. Easier said than done.

My caregiving days and days of grief taught me a lot about people. I consider myself to be very fortunate to have amazing friends who have been and will be there for me. Selfishly, however, I am scared and devastated that I don’t have that one person who is there for me the way that I was there for Ben and my dad. Maybe my experience as their caregiver will empower my own inner strength, resilience and willingness to lean on my trusted and cherished friends. I also know that opening myself up to others can also bring unwanted and negative energy from people. I do not want to be asked a lot of questions, particularly from people who ask either out of perceived obligation or for the drama that fuels them more than out of genuine concern about me. I do not want a lot of unsolicited advice with the “have to” and “should” commentary. I also do not want to hear from the suddenly abundant self-proclaimed “empaths,” who, in my experience, do little more than make situations about themselves rather than the person they claim to care about. I will have to find for myself the voice I used to advocate for Ben and my dad.

The reality is that I took a backwards tumble over all the positive steps I took during the summer. All my efforts to envision good health were tossed out the proverbial window. Despite this, my heart and mind recognize that the groundwork I set this summer offers me hope for the future, and those ideas still motivate me. I need to work through my feelings, much as I had to work through my experiences in caregiving and grief. I think it is a good sign that for the first time since I learned about my health issues, I wanted to write a blog post. Also, for the first time in a few weeks, I resumed work on the second draft of my book. And, I have continued to participate in my writers groups and writing classes because I did not want to dwell in sadness, choosing to live in whimsy and creativity. I want to engage with things and people that comfort me and guide me forward. One of my very favorite quotes from Walt Disney is, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” I see that in myself. I stood by Ben and my dad as they faced their illnesses. During that time, I lost myself, but I emerged from the depths of grief discovering new sides of myself. I tiptoed back into life until I was willing to plunge back wholeheartedly, accepting the good moments as well as the setbacks. Now, I need to be there for myself and keep moving towards my dreams, even if I confront a few Maleficents on my journey. I just need to find a wishing well.

ALS,Caregiving,Grief,Walt Disney World, Disney
Looking ahead…

What I Learned About Caregiving From Mary Poppins

Yesterday, October 1, marked the 86th birthday of Julie Andrews. As always, it is an opportunity to devote a post to my beloved Julie and the role that introduced me to her and remains my favorite Disney film: Mary Poppin. The consummate nanny, Mary Poppins taught me many things about caregiving. Mary Poppins was the first movie I saw in a theater and clearly left a lasting impression!

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Walt Disney World 2002- My second trip to Walt Disney World with Ben. The pre-ALS days.

All film photos: Mary Poppins (1964), Walt Disney Productions.

What Ratatouille’s Remy Understood About Food

In online forums, I have seen many comments and questions about ALS and eating issues, ranging from chewing, swallowing and calories to getting and navigating feeding tubes. Eating is an experience that we take for granted until ALS happens. More than taste, food conjures memories and draws all kinds of connections for us. Ben and I used to enjoy a Saturday night when I would choose a recipe, then we shopped together, and I cooked with a little help and a lot of enthusiasm from Ben. On special holidays, like New Year’s Eve, we did not like to party, and for us it was fun to choose a new and fancy recipe and just have a cozy evening. With ALS, Ben could no longer eat his favorite foods. Even treats like jellybeans were no longer an option. While that may not seem like a big deal, our love of jellybeans went back to the very beginning of our romance. I don’t think I realized the significance of food for us until we were not able to enjoy that romantic and fun aspect of our relationship.

In the Disney film Ratatouille, Remy says, “If you are what you eat, then I only want to eat the good stuff.” Unfortunately, as chewing and swallowing became more difficult and daunting, Ben did not want to eat and he was losing a lot of weight. Like many people with ALS, Ben’s life started to include a lot of Ensure Plus because he needed extra calories. Like Remy, I began to improvise and combine different foods to make as much “good stuff” as possible. Ben got a daily milkshake with calorie dense ice cream, peanut butter, and assorted other fruit and treats. Much as I love sweets, I never had one of those milkshakes, have never had a milkshake since and probably never will.

The ghost of famed chef Gusteau advises that “cooking is not for the faint of heart. You must be imaginative, strong-hearted, you must be willing to try things that may not work.”  Indeed, I did use my creativity, and, in retrospect, it was a way to be craftsy, which I missed in my life. Also, it was a way to bring something vaguely resembling the fun evenings we had when I cooked. I replaced our regular blender with an impressive Vitamix. Ben loved chicken, gravy and mashed potatoes all mixed into a bisque-like consistency. He enjoyed chicken with teriyaki sauce and mashed potatoes. I even perfected a carbonara-like sauce for him. I experimented with different broths to help with textures and flavors. Ben had a great sense of humor about it laughed at my eccentric presentations, but he did miss chewing, and the reality was that eating did become a scary. There was always the fear of choking. Additionally, when he could no longer hold utensils or a cup, he had to be fed his meals. This was yet another constant reminder of his lack of independence and ability.

Even when he had a home health aide who loved to cook, Ben preferred that I did his cooking. When I left food for her to just heat and grind in the Vitamix, Ben was always upset that she didn’t grind it enough. He said she insisted it was chopped as much as possible. Of course, that wasn’t true, since I was easily able to achieve more of a puree. I have seen caregivers who do not take seriously the requests from their carees. In many cases, as with Ben, those requests are legitimate. Frankly, as I saw it, even if a request was simply a desire by Ben to exercise some control, it is understandable in the context of the little control he had over his life.

When unknowingly critiquing the rat Remy’s meal, Anton Ego, the food critic, reflected, In the grand scheme of things, the average piece of junk is probably more meaningful than our criticism designating it so.” Eating that meal transported Anton Ego to his childhood memories.  Many people do associate foods with their families, their cultures, their travels and life experiences. McDonald’s might not have qualified as “good stuff”, but for me, it was the fun of going there after a day at the beach with my family and my dad singing and making us laugh in the car. My favorite restaurant in New York City, Joe Allen, is beloved because I often went there with my mom, aunt Ellie and grandma before the theater. Baking is a way that I feel very connected to my grandma, since she taught me the recipes that were originally her mother’s. I might not be a fabulous cook, but Ben appreciated how much I loved cooking for him, and it was a joyful and loving part of our relationship to shop and spend the evenings together. I never really cooked until I met Ben, so he rightfully claimed credit for my acquired skills. With ALS, food took on a different meaning. It was about Ben’s nutrition, maintaining weight and staying safe. Even at our happy place, Walt Disney World, Ben was always terribly self-conscious and nervous that he would have a choking incident. Fortunately, we only had one small incident and it was brief and unnoticed by others. Ultimately, food represented more loss.

I think that Remy’s most profound statement is, “the only thing predictable about life is its unpredictability.” No one could have predicted that Ben would have to battle ALS. We could never predict the many ways that our lives would have to change and their emotional toll. After Ben got his feeding tube and tracheostomy, one of the things Ben said he truly missed was food. In fact, one of the very kind nurses put a little bit of soda on a mouth swab so he could at least savor the flavor. After I lost Ben, I did not expect that a mundane chore like grocery shopping alone would be a painful experience. It was stressful to walk through Trader Joe’s and see the ice cream I bought for Ben’s milkshakes, and the gravy that I bought in huge quantities so that I always had it on hand for purees. I did not cook for at least a year, until a friend of mine had surgery and expressed a desire for a home-cooked meal. As I prepared what was one of Ben’s favorite meals, I was overwhelmed by the fragrances that Ben always loved. It has become easier as I am more able to focus on the good memories and I am more accustomed to doing things alone.

Now, when I enjoy a meal, I find myself hoping Ben is somewhere savoring all his favorite foods!