Grief And The Things That Turn Me “Inside Out”

Sometimes, the hardest times are the ones when I remember the joy at the same time that I feel the sharp devastation and anger about loss. These are the times that turn me Inside Out. That’s what I have been experiencing this weekend. It’s exhausting.

Tomorrow will mark four years since Ben left this world. It’s almost as if I gear up all summer for this day. For the most part, I am proud, relieved and joyful that this has been a very good summer. In fact, it’s been the best I have had since he left. I was better able to balance being myself- my new self- with keeping Ben in my heart wherever I went. I know and accept that I can’t keep sadness in a corner, as Joy tried to do. The sadness and the joy were all part of our relationship, so they have to remain in my memory to keep them real.

I’ve noted it before, but there are triggers of setbacks. I don’t usually get angry at myself for crying. Anyone who knows me knows that I often default to crying. In Inside Out, Sadness says “Crying helps me slow down and obsess over the weight of life’s problems.”

This has been a weekend of tears and of letting myself feel the weight of grief, loneliness, alone-ness, anger, frustration, compassion and empathy. I spend a lot of time assessing myself and how well I am navigating my life. Maybe I need this time to slow down and let myself miss Ben and lament what our life could have been and what ALS took from us and is continuing to take from so many other individuals and families.

On Friday, I traveled up to the Berkshires to spend the day wandering around the town of Stockbridge prior to volunteer work on Saturday. I arranged to stay at the luxurious Red Lion Inn. It had been many years since I sat on the famous porch enjoying a glass of wine and I looked forward to being there. I entered my room and immediately thought of how Ben would have loved it. We loved to go to the quaint towns of Vermont, and the Inn and this room were reminiscent of our visits there. As I walked through the little library that led to the elevator, I thought of how Ben would have looked at the wall of books and commented that I would love a room like that, and I would have to agree. I took pictures as I know he would have done. In my room and throughout the building there are many beautiful antique desks. My aunt Ellie loved those desks, and she was the first person to take me to the Berkshires, so thoughts of her were also in my mind. She is the remaining relative to whom I was the closest, but with her Alzheimers disease, although I believe that I remain somewhere in her mind, in most ways, the aunt I knew and loved is gone.

The first shop I visited was Williams & Sons Country Store. Ben and I loved to go to country stores. I love the look and feel of them. We always found fun things at the Vermont Country Store, where we spent hours! It didn’t feel the same being without Ben. Nothing does, of course, but traveling to a place so much like places we would travel to felt so very sad. I wanted him to see the retro Cracker Jacks boxes, wanted to buy them just because he would have loved them. I did buy a little tiny turtle with a bobbing head. It reminded me of him and I knew he would have loved it, too.

I continued my stroll and spoke to lovely shopkeepers. I treated myself to some new clothing and fun jewelry. Retail therapy is always helpful to me, but I could not really shake that feeling of not belonging. I did have a glass of wine on the porch, but I felt like the only person by myself. I don’t always feel that way. Throughout my life I have traveled by myself, so I am often comfortable on my own. I think it was especially hard because Ben would have enjoyed it so much and it would have been a perfect getaway for us.

I was happy to meet Norman, the feline ambassador of the Red Lion Inn. He was very tolerant of my need to follow and pet him. I could hear Ben reminding me that I was like Boo in Monsters, Inc., who was always following Sully calling, “Kitty, kitty!” There was not a thing I did that didn’t make me think of and miss Ben. I think my last straw with myself was going to the pub where there was live music. I thought I would enjoy it, but it was something I really couldn’t do without Ben, so I left quickly. I found Norman, said goodnight, and went to my room to prepare for my volunteer work. This was filled with more reminders of Ben, since I was working with Hope Loves Company, a wonderful organization that serves children who have a family member with ALS.

Hope Loves Company runs 3-day camps in various locations across the country for families whose lives are affected by ALS. It’s a special opportunity for the whole family to get away and participate in an array of fun activities including boating, swimming, sports and crafts. Since all of the campers have ALS in common, they share an understanding of the experience that need not even be spoken. It’s a beautiful thing. During the spring, I had volunteered to do a scrapbooking workshop in New Jersey, and found it so rewarding that I asked to repeat the workshops at the camp in Camp Emerson in Hinsdale, MA. I am grateful that Hope Loves Company embraces my desire to volunteer and welcomed the idea of a scrapbooking project. Scrapbooking is a valuable tool for the children. Some bring photos from home and we also print out photos taken during camp. It is a way to capture and share memories. Older children can write more of a narrative if they wish. I went a little crazy shopping for all kinds of stickers, and it’s fun to see the kids select their favorites. It’s great to watch them interact with their parents as they look at photos together. I brought supplies for embossing, which lured even the coolest older kids. They had fun, were intrigued, and continued to bond with each other, which is such an important aspect of the camp. Maybe scrapbooking will be something that they will pursue. Maybe they will think about the activity as they look for another outlet for their self-expression.

Some of the scrapbooking stickers. Hope Loves Company camp at Camp Emerson, Hinsdale, MA

I enjoy meeting the families at the camp. For some, I suppose I am the sad reminder that, at least for now, ALS always wins the battle. But, I hope that they also see that I am here, I reshaped my life and I want to be supportive and do something positive to help in the battle against this disease.

The bus ride back to New York gave me five long hours to think about how much my life changed as a result of ALS. It certainly altered the course of my relationship with Ben. Although I had already been my dad’s caregiver, being Ben’s caregiver was a different experience. I don’t want to wash my hands of ALS. I want to support people who are impacted by the disease. It gave me joy to know that people in the Berkshires who recognized me from the NJ camp valued that I traveled to be with them and do a project with the children. Caregivers need to feel that kind of love and caring. For me, volunteering is a way to channel the negative experience into positive, into a way to help others. It’s something that I want to do with my life. I am thrilled that my blog helps others, but I want to expand that to more hands-on experiences, and the workshops allow me to do that. I guess that although the timing was difficult, and it turned me Inside Out, the volunteer work being on this particular weekend is a perfect tribute to tomorrow’s anniversary of Ben’s departure. I find comfort in knowing and affirming that our life, our relationship and our experience with ALS will be a part of my life and goals as I move forward.

These are excerpts from my own scrapbook, which I show to the kids so they can see my own experience with ALS and some ideas for scrapbooking.

             

A favorite page- Ben’s proposal at Walt Disney World!

Finding Nemo, Dory and Myself at The Georgia Aquarium

I got a smooch from Imaq!

I spent the last couple of days at the Georgia Aquarium, participating in some animal encounters. Yes, I found Nemo, and I found Dory, but I also think of Georgia Aquarium as a place where I found myself.

Last summer, I went to the Georgia Aquarium for the first time. I originally learned about it from National Geographic magazine, which was a favorite of my dad’s and mine. I still have some of his very old copies and some of my National Geographic School Bulletin kids issues- my parents always got a subscription for me. When I learned that Georgia Aquarium offered an otter encounter, I had my plan! I wrote about that experience last year (click here for that post). It was and it remains a place where I strongly feel Ben’s absence and presence. ALS took so much from Ben, including the opportunity to enjoy places. It took many things from me, too, including the ability to share experiences with him. I remember that last year at the Aquarium was the first time I felt real anger that he could not have lived to enjoy it. I still feel that anger and sadness, but I also feel him and look for signs that he is with me. Going to the Georgia Aquarium is something positive to do at this time of year, since summer is a difficult for me, filled with memories of Ben’s last summer, spent in the hospital, and the anniversary of his departure from this world.

I cannot rave and gush enough about the Aquarium. It is a truly spectacular facility. The research it conducts and is engaged in, along with the care it provides for its residents, is supremely impressive. I easily spent two full days there and I could have returned for more. I could watch the sea and river otters for hours and I don’t know how long I spent absolutely mesmerized by the beluga whales. I saw the dolphin show twice because it is fabulous and the dolphins and their human trainers are astounding! Standing in the Ocean Voyager tunnel while huge whale sharks, manta rays, sea turtles and a host of other magnificent fish swim overhead and around me is daunting and yet awe-inspiring! It’s even fun to touch the purple sea stars! I loved watching the divers wave to the children from the huge tank, where they are surrounded by the whale sharks- the kids’ reactions are priceless! There was a little boy of no more than four years old and wearing a whale shark t-shirt who told me all about whale sharks as he waited so excitedly to see one for the first time and his parents laughed as they explained that they planned the visit just for him to see the whale sharks. For these children, whether they pursue a career dealing with sea life, form a commitment to protect and be kind to the planet and its inhabitants, or enjoy the wonder around them, there is no doubt that the Aquarium will leave an unforgettable and positive impression.

I found that this year, I had a very hard time with the penguins. I did not spend much time watching them. For Ben and me, penguins were very much “our” animal. We collected all kinds of penguin things. At one time, I had planned a visit to a local aquarium where they were kindly going to accommodate Ben’s wheelchair in a special encounter area. Unfortunately, we couldn’t make it and never had another opportunity to visit.  Last summer, I did two wonderful penguin encounters at the Georgia Aquarium, but I struggled with guilt that Ben never had the chance to actually meet a penguin. Penguins are truly delightful creatures, and I was surprised to learn that they are kind of referred to as having temperaments like cats- if they don’t warm to their trainer, they will not do what’s asked of them! As adorable as they are, and as fun as my memories are, I find that I cannot enjoy them as much as I did when I was with Ben. It hurts to watch them. This strikes me as odd, because there are so many things that I do for Ben, in his memory, because I know he would love them and I feel like I enjoy them through his eyes. The dolphin shows are that way for me. I feel Ben’s excitement and I think I cry at the shows because I am overwhelmed by conflicting emotions. I feel like the turtles send a little hello from Ben. Maybe the fact that we collected penguins, particularly when they were couples, makes penguins different. I suppose I should have learned by now that grief is unpredictable in this way.

My passion (or maybe obsession) with otters is my own. And, my desire to interact with animals is something that has always been my own. Ben always found it endearing and a bit fascinating that I had such a deep connection with my pets and that I had boundless love for animals. My dad and I shared that love for animals. The Georgia Aquarium holds a kind of magic for me because it enables me to meet and interact with some of the animals I adore. I don’t think I ever realized how much that means to me down to my core. Of course, it’s fun to meet and greet the animals, but it is a deeply emotional experience for me and one where I feel like I have really found myself. I love to learn about the animals, but I learn even more just watching the staff interact with them and talk about their distinct personalities and preferences. There is so much love, respect and passion there, and it fills my heart to get a glimpse of that and to be a part of it in encounter programs, and even by talking to the staff and volunteers in the halls of the Aquarium. Although I traveled there by myself, I rarely felt lonely or alone- I was so surrounded by love and the spiritual presence of Ben and my dad. My love of the Georgia Aquarium has strengthened my personal dedication to support the efforts of this facility to raise awareness and understanding of, and to protect, sea animals and their environment.

That’s cutie Brighton next to me.

My buddy is Cruz.

I know that Ben would absolutely love doing the encounters, though he did not swim so I don’t think he would have opted for the beluga whale encounter. For me, however, being at the Aquarium and participating in the interactions is almost a spiritual experience. It is calming and almost meditative, yet energizing, to watch the animals and to learn about them. Feeding and practicing various behaviors with them is pure delight. I find myself wondering how and if I could work with animals after I retire from teaching.

I do look for signs that Ben is watching me. Maybe they are coincidences, but I choose to believe that they are signs, or maybe pixie dust! I got a couple during this visit. I arranged two sea otter encounters, because one just wasn’t enough, and during the first, I asked about Mara and Gibson, the two pups about whom I had been reading and watching videos since they were rescued and given forever homes by the Georgia Aquarium. Seeing them was going to be a highlight of my visit. I was told how to spot them in the habitat, and I was eagerly anticipating seeing them. During my second sea otter encounter, while we were being told about sea otters, a little otter saw one of the trainers with food and she serenaded us with what I will call a symphony to try to get some food. The trainer smirked and tried to hide, but the otter was not fooled. I suspected that it was one of the pups and I asked if it was Mara or Gibson- it was Mara. I got goosebumps! Not only did I get to see the pups, but we were able to feed them. I was so excited I almost cried. They are as adorable as I had imagined. And, louder! Magic was on my side that they were ready to participate in the encounters. Or, was it Ben? Maybe both!

The beluga whale interaction was one of the most extraordinary experiences I have ever had. It was literally out of my comfort zone to wear a bathing suit and wet suit. It was also daunting to get into the water, since the interaction took place in what was actually the very top of the belugas’ habitat- that is very deep water with five beluga whales and three harbor seals. I know how to swim, but I was still scared of falling off the rim (think Nemo and Dory and the drop-off). Once face to face with the belugas, I was completely in love. That huge “smiling” head popped up unexpectedly and simultaneously startled and delighted me. Kissing and being kissed by Imaq, the Aquarium’s largest beluga (around 3000 pounds and 14’ long), was the opportunity of a lifetime, as was having (and losing!) a splash party with Maple. The rest of the world fell away for me as I watched, worked and played with these big belugas. I have never felt like that before.

There are staff photographers at all the encounter programs. As I reviewed my photos from the beluga interaction, I was not at all surprised to see in almost every single photo my huge smile and laughter. What really caught my eye was one photograph in particular, in which I have a certain smile with my tongue through my teeth and my shoulders hunched. It was an expression that Ben loved and always imitated because he said it showed my utter delight. Yes, the photographer took tons of photos, but the fact that she captured this one on film is, to me, a sign from Ben that he knew this was where I was meant to be and most myself, and that he was happy for and present with me. I am going to print this photo.

This was an expression that Ben loved and always immitated. That it was captured on film is, for me, a sign from Ben.

My dad would have loved this experience, and he would have been proud of me for not letting my fear keep me from following my curiosity and participating in the program. I am generally a nervous person. I’m sure my dad was watching me and I’m grateful that I can feel his presence in these moments. When I was young, he took me to the Coney Island Aquarium, and although I was so excited, I was also terrified of the whales swimming head first towards the glass as if they could break through. I was also repulsed by the octopus, because I expected it to look like the cute cartoon characters I had seen. I will always remember my dad’s laughter at my reactions to the animals, as well as the love we shared for animals.

I must also mention the Sea Lion encounter, because it was absolutely wonderful. Our group leader and the team were inspiring to watch because of the rapport they have with the sea lions and, as I have noted, the love they have for them. I look at the photos and see my joy. It was the joy that I always found when I looked at photos of Ben during our visits to Walt Disney World. It’s pure and deep. It transcended his physical appearance.

I feel very lucky and grateful for these opportunities. They are part of my treasure trove of new memories and symbolic of how I am moving forward but carrying my loved ones in my heart as I journey ahead. It is also a wonderful feeling to discover ways that I can find peace and find myself. Going to the Georgia Aquarium is likely going to be an annual adventure that, in my own way, I will share with Ben and my dad.

 

Ohana Means Family- Who is Yours?

At this time of year, when I think about the upcoming anniversary of the day that Ben left this world, the notion of family comes strongly into focus and reminds me of how my definition of family has changed over the years. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I used to be troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother magnified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. When I lost my dad, I lost the sense of family that I always thought of as my anchor. Family frequently let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. I was someone who always said that family was important- it was also what I was taught- but I didn’t feel the unbreakable bonds that I believed should exist. In addition to grief over the loss of my dad and Ben, I was grieving an overarching sense of family. As with all grief, I learned to co-exist with it despite reminders that still do make me feel sad and alone. However, reflection has lead to new perspective, and the Pollyanna in me has enabled me to expand my view of Ohana. (Click here for Pollyanna’s instructions on how to play The Glad Game.)

Ben and I were Ohana, with or without a marriage certificate. When Ben was diagnosed with ALS, we were not legally married but, of course, there was no question that I would be his caregiver. I had friends and relatives who told me to leave him because we were not married, which was absurd to me, because I loved him and Ohana means nobody gets left behind. His family members were certainly upset by his diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, but they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben witnessed my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was also with him at the end. She and I had a lot of time to talk in those weeks. We were close for a time, but that seems to have disintegrated, which is, for me, yet another disappointment in the experience of family and not really unexpected. I try to focus on the few nice surprises that occurred along the way, in the form of the few family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

I found in caregiving that the people who are least involved have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not much of a comfort to him. This is not the way I want to define Ohana.

Just as I have found ways to reshape my life, I have also reshaped my perspective on family. As I have said before, I am eternally grateful for an incredible group of friends. Though they do have families of their own, these supportive and loving people embrace me and are my Ohana.

Summer is now become a time when I travel to visit some of my friends. I’m beginning to see it as the time I travel to see my family. A few weeks ago, I visited my friend Dorie, which came with wonderful revelations (click here for that post.) Last week, I visited my college friend Monica and her family in Chicago. She’s got two absolutely fabulous daughters, one of whom is my namesake! I love them all. We did fun things like go to a Cubs game (Cubs won!), visit a zoo and discuss the plans for our upcoming trip to Walt Disney World, which will be a tribute and celebration of Ben and my cat, Disney. For me, the best part of the visit was just sitting around on the sofa and talking or watching videos. It’s a beautiful thing to feel like I am part of the lives of these children and to feel like family, accepted, understood and even appreciated for all my quirkiness. I could continue to lament Ben’s and my lack of caring relatives, but I am no longer under that cloud of grief. Instead, I am so very proud and fortunate to be surrounded by people who have been more family than family.

Monica, my namesake, Abby and I getting splashed at the dolphin show at the Brookfield Zoo.

With Monica at Wrigley Field- Cubs win! August 2019

In caregiving, if the people whom you’ve defined as family are not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? If you’re a primary caregiver, as long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family interactions happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends who are good listeners, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of (or at least work hard to fight) anger and resentment, and I have begun to recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful that I was able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge of and responsibility to the caree.

As you move through caregiving, grief, and life, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back. Lip service is irrelevant. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. I have indulged in and expanded my family of friends. Maybe they are not the traditional definition of family. Yet, they are. Like Stitch, I am grateful to have them in my life. Know who your Ohana really is because they will not leave you behind. That is truly something to celebrate.

Stitch gave Ben some extra love! July 2014

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.