ALS

‘Tis the Season to be Emotional

Disney,ALS,grief,Christmas,Chanukah

Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

Thanksgiving has come and gone. My second Thanksgiving spent without Ben. My second holiday season now begun without Ben. I’m sad to say that I’m finding this year to be getting off to a very rocky start. I wasn’t expecting that. I guess I also wasn’t expecting to feel worse the day after the first anniversary of Ben’s “leaving,” as he would say (click here to read that post), so I guess I need to abandon my expectations.  Grief. If only it came with an instruction manual. I understand some of it, and can predict and gear up for bad days like anniversaries of various events.  But, when I’m unprepared, the sadness really shakes me.

I am grateful for so much, including having wonderful friends who include me with their families. But, I think that last year I went through motions and was either sad, numb, distracted, or any combination of those feelings. This year, I took the time to think about what I would like to do over the long holiday weekend, and I chose to decorate my apartment for the holidays and to get together with friends.

Thanksgiving is a family holiday, and I’ve lost my parents, closest relatives, and Ben. My aunt Eleanor has Alzheimer’s disease, and although she seems to recognize me as familiar and we relate very much as we always did, I’ve lost her, too. My friends are my family, and I am so fortunate for that, but it’s also been a harsh reality and an adjustment. I think it’s also part of the process of grief, and of life.

Last year, I set up the sparkly pink and silver tree that Ben got me a few years ago, when a real tree and the lights became too much to deal with, given his caregiving needs and our limited space. Ben always left decorating the tree to me, because he said he’d never seen anyone get so excited about decorating a tree. But, he would occasionally chime in on where he thought ornaments should be placed. I missed him while I was decorating, but I missed him no matter what I was doing. I didn’t get any new ornaments and kept everything as it had always been. I even put his favorite ornaments in the same places on the tree, where he was able to see them from his desk. I remember that the tree did not bring me a lot of joy, but it didn’t make me especially sad either. I was struggling with so many emotions at that time that the holidays were just one more emotional episode to add to my list.

grief,ALS,Disney,Christmas

Ben loved Sully (top right). The high-four balloon had symbolism (see my birthday post). The French girl from It’s a Small World was also a favorite- ooo la la!

This year, although I miss having a real tree, I felt like I wanted to keep the pink one again because it was a gift from Ben. I expected to set it up on Thanksgiving with our ornaments, most of which are from Walt Disney World. Last winter and spring, I repainted, recarpeted and got some new furniture and I was actually looking forward to seeing my holiday decorations in my “new” setting. It didn’t turn out to be the positive experience I thought it would be. Instead, I’m feeling down and defeated because decorating has been a laborious and sad process. The bride and groom Mickey and Minnie ornaments that we got when we became engaged just reminded me of a happily ever after that didn’t happen as planned. On the other hand, I still love to look at the photo ornaments that we had made after each trip. I can see the way he changed over the 6 years that his ALS progressed, and yet I also feel so grateful that we could make those trips after his diagnosis and that we are so happy in each photo. And, I remember how we pored through photos to pick the ones that would become ornaments.

ALS, grief, Christmas,Disney

It’s a Small World (my favorite song!) at the top and to the left of our photo ornament is the Hawaiian girl from that attraction- we loved her.

Again, I placed his favorite ornaments on the tree where he would have been able to see them from his desk. It’s where they belong.  I did get some new ornaments in London. I thought they would be nice, new additions to reflect a favorite place and new things in my life. But, when I placed them on the tree, I immediately felt that they didn’t belong. They interfere with my memory of what is still, in my mind, our tree.  My tree is a wonderful visual representation of my life- the wonderful memories of times with Ben meshed with the addition of new memories I’ve created as I’ve taken my first baby steps on a new path. By including my visit to London, which was a big step for me (click here for that post) I’ve also shown that I’ve made progress in my grief and my life. However, I did not anticipate that I would also see a jarring clash of past and present. I spent so much time trying to keep things the same- even continuing to arrange things for Ben the way I used to- but things are not the same. The beautiful ornaments that I found in London change what I seem to want to keep frozen in time, as if Ben is still here. I did not realize that until I saw all the ornaments hanging on the tree.

ALS,grief,Disney,Christmas

Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.

This year, I feel sharply the pain and the loss, while I’ve also accepted that I need to shape a life. It’s a difficult balance, and maybe that’s why this year is harder. I have heard that sometimes the second year is harder but I don’t think there is a steadfast rule. That’s the problem with grief. There is not a one size fits all way to experience it. Last year everything was a mess. This year, just as I felt I’ve made some progress in adjusting to life, I was caught off-guard with tears and loneliness when I was doing something I looked forward to doing.

ALS, grief, Christmas, Disney

Ben’s little Disney fiber optic tree. It was always on the corner of his desk. I got a new table, but I still keep the tree in the same place.

I wrote this blog post because I thought that sharing my own experience might help other people in grief and struggling with not knowing how to handle the holidays or where they belong. Maybe you can relate or maybe this is not your experience. I do think that part of grief is accepting that there are going to be good and bad days. I am grateful that I do have more good days now. My very whimsical tree still shouts a love of Ben and our memories and love of Disney. I have faith that as the season progresses and I continue to adjust to my tree, and, beyond the holidays, my life, that I will find a balance that respects my memories and traditions but also welcomes new ones.

Feel free to share your experiences or ideas or advice in the comments section below.

Superheroes of Caregiving and Grief: Gratitude and Perspective

Ben and I at Walt Disney World, July 2014

Ben and I at Walt Disney World, July 2014

A little more than a year has passed since Ben left this world, and it’s almost 3 years since I lost my dad. Grief is filled with ebbs and flows of emotion, and I do, at times, unapologetically allow myself to give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses. The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, I did have things for which to be thankful. I still do.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,” said Walt Disney. In theory, I agree with Walt (OK, so no surprise there!) But, when I was watching my loved ones deal with ALS and cancer, and I was struggling with caregiving, and then grief, although I was appreciative of people and things, I can’t say that the state of gratitude was where I lived, or even where I wanted to be. It took too much effort. Ben lived in a state of denial about the progression of the disease, and I lived in a state of anxiety, more relieved than grateful for any day without crises. To me, saying I was in a state of gratitude would have implied a sense of peace and contentedness that I did not have. As time has passed, however, I’ve learned that “being in a state of gratitude” did not mean to naively ignore or diminish the impact of the bad experiences, or to try to “push Sadness into a corner,” like Joy from “Inside Out” (click here for that post.) To be in a state of gratitude gives me the very important power of perspective. There were times that I could not get beyond the chaos and sadness, and that was and is fine and genuine, but I can also shift my perspective to focus on the many aspects of these experiences that were filled with love, compassion and caring, and those do compel gratitude and invite more of these thoughts. That’s also genuine, and it’s a good and humbling feeling.

My dad and I

My dad and I

I feel very fortunate to be able to share some things I’ve discovered in my state, or perspective, of gratitude.

At the top of my gratitude list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving was the most heartbreaking and challenging thing I’ve ever done, but it was also the most important, valuable, loving and rewarding thing I have ever done. I could not save my dad or Ben, and I wish we did not have to take these journeys, but I am so thankful that they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. It didn’t always feel like it, but it was a gift to be able to feel and express that depth of love in such tragic circumstances. And, I treasure the knowledge that they loved me.

I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. In Ben’s situation, when family didn’t step in -and there were definitely disappointments and dramas- we  could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.

I am grateful that in June I was offered an opportunity to present at the annual memorial service of Mount Sinai Medical Center’s Visiting Doctors Program a public tribute to Ben and to the people from that program and the hospital who were so fantastic to him, and to me. ALS is a rare disease, and although it is difficult for me to speak publicly, I feel it is important to take any occasion to share Ben’s experience and, hopefully, contribute in some way to an overall understanding of what it is to live with ALS and why there must be tireless efforts to find a cure. If you’d like to read my tribute, click here.

I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and it touches my heart to know that readers find comfort in my words. I’ve gotten back into my craft work with miniatures and into Pets en Voyage, the pet souvenir business Ben and my dad helped me develop and launch. I’ve also created displays of photos and memorabilia around my home, and looking at these things always makes me smile, if sometimes through tears.

I am grateful to Walt Disney for giving us all things Disney. I am simply in awe of his imagination and vision. I am grateful to Disney for amusement, consolation, comfort, life lessons, belief that dreams come true, perspective and incredible memories. And, because I am so grateful, I even named my cat Disney. I am thankful for her every single day for the love, cuddles and laughs that she gives me and for the love she showed to Ben, especially when she visited him in the hospice.

photo-7

I am grateful to be resourceful, and to have sought out support groups and resources that have guided, encouraged and motivated me, and let me know that I am not alone in my feelings.

Walt Disney also said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

I’m grateful that for the first time in a long time, I am cautiously optimistic about starting down a new path to see where it leads as I reshape my life, though there are and there will be setbacks. My memories, and desire to respect Ben and my dad and make them proud, will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. This would also be a good place to add that I am grateful to have my mom’s child-like wonder and spirit, with an inner child that cannot be contained. It allows me to continue to wish upon stars for dreams to come true. I just keep reminding myself of what I learned from Christopher Robin and Winnie-the-Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I hope that if you are reading this, and you’re struggling with gratitude and the holidays, that you will be true to your feelings but also consider a perspective that allows you to see and be grateful for love, compassion and good memories to carry you forward. And, take a bit of time (I do realize that time to yourself can be a luxury) to think, write, draw or in some other way acknowledge yourself.

Happy Thanksgiving.

With all good wishes,

Abby

A Happy Birthday Card To Mickey Mouse!

Mickey and Us
Happy Birthday, Mickey Mouse!

Since my blog is inspired by a love of all things Disney, I want to acknowledge the birthday of my favorite Mouse! You may turn 88 today, but you are the eternal child who brings out the inner child in all of us. I know it’s Minnie’s birthday, too, and I also wish her a Happy Birthday!

 
You and I go back a long time. My mom loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! But, I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse in her arms. My mom was the consummate child at heart, and I get that from her!

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near our office (we met at work). We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.

 
We went to Walt Disney World several times together. Our first time was for my birthday, and we discovered the relatively new Mickey’s Not So Scary Halloween Party. Little did we know that we would be completely captivated by this event. We planned almost all of our visits to Walt Disney World around Halloween (and my birthday!)

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Our first visit to Walt Disney World together! 2001

After Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Epcot, Walt Disney World, Halloween 2012

I admit that I was the one who had to greet all of my Disney friends. Ben sometimes joined me for photos, and sometimes he just took pictures and laughed at me. But, with you it was different. He always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional. While some people just see actors, I believe that to visit Walt Disney World is to embrace the fantasy and the whimsy and, besides, I believe in you. With an ALS diagnosis, you want to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he handed me a “diamond” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.

 
For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Ben also had an incredible attitude, and he was determined to engage in life.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Those memories comfort me now.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

No caption needed for the joy in this photo!

Happy Birthday, Mickey. May you continue to be the spark of hope and happiness  for children of all ages.

I will always love and thank you,

Abby

Sometimes the Right Path is not the Easiest one

Caregiving,grief,ALS,Disney,Pocahontas

Grandmother Willow- Pochahontas (1995)
Walt Disney Pictures

 

It wasn’t a matter of choosing to be a caregiver.  My dad was elderly and was diagnosed with cancer. Shortly thereafter, Ben was diagnosed with ALS. I loved them and I wanted to be there for them, so, of course, I was their caregiver. I didn’t think about the implications of caregiving as their illnesses progressed, since things were too chaotic in the present!  I look back now and indeed, it was crazy. I was working full-time as a teacher, running home after school and caring for Ben, and talking to my dad several times a day to encourage him to eat, listen to his worries and follow up with his doctors. I used personal days to accompany them to doctor appointments. On weekends I took care of Ben and also traveled by train to visit my dad and do his shopping. I didn’t take care of myself, which was apparent to everyone and to me. As Grandmother Willow from Walt Disney Pictures’ “Pocahontas” said, “Sometimes the right path is not the easiest one.”

I’ve remarked in other posts that Ben was incredibly brave and determined to stay independent for as long as possible, and since I felt that this attitude was helping him to stay in fairly good shape, I followed his lead and let him try to ignore what was happening to him. I believed then, and still do, that the right path was the one that let Ben deal with his ALS in his own way. For him, it meant that we went from crisis to crisis without a plan. It wasn’t easy for either of us.

When my dad was in the hospital and then in the hospice, I took family leave and traveled a few hours every day to see him. Fortunately, at that point Ben was fairly comfortable being alone, and he could contact me if he needed anything. We had a back-up plan with a couple of friends and one of his daughters. I do vividly remember one instance of being with my dad while texting and calling two friends to coordinate their going to our apartment to help Ben. At times like that, a sense of humor was as imperative as crisis management skills!

As his ALS progressed, Ben did not want to admit that he needed more care than I alone could provide. I knew that I was starting to fall apart from the pressure of juggling full-time teaching with full-time caregiving, and then, grieving the loss of my dad, who passed away after a couple of months in hospice. I didn’t think I had any options. This was the path Ben chose and I chose to join and support him on this awful journey. Ben depended on me. I saw how he struggled physically and emotionally with ALS and could not bring myself to pursue difficult discussions with him about his increasing need for more care and what I considered to be a selfish concern for myself in light of what he was facing. And, to talk of the future meant thinking about nursing homes, tracheostomies, feeding tubes, depleted savings and death. For me, it also meant thinking about life without him.

Like anyone who needs private care, we were worried about expenses because we worried about what we would need to do in the future. The progression of ALS is very unpredictable. But, when Ben became uncomfortable being alone, we did hire a caregiver for a few hours a day during the week. I woke up early to get Ben situated and he was alone for a short time until the aide arrived and then for a couple of hours until I got home.  However, there were days that public transportation was delayed and he was alone longer than anticipated. Those were times of panic for both of us, and we were lucky that nothing ever happened. On some days I had to stay home because the caregiver was unable to come to work. Or, if Ben was not well during the night I was afraid to leave him alone at all and frankly, too exhausted to drag myself to work. My days at work were spent with my cell phone in my hand or pocket, just in case. It wasn’t good, it wasn’t easy, and there was not even time to think about if it was right, or exactly what to do to make it better.

Weekends are usually for rest and relaxation, but not for caregivers, or for the people who need their care. Ben looked forward to weekends because I would be with him, and I understood and appreciated that, but I felt isolated, stressed, overtired, and, when he was demanding and critical, I felt unappreciated and incompetent. The lifting and transferring also took a physical toll on me. His struggle with all daily life activities took an emotional toll on both of us. Ben was fairly homebound because our apartment was not accessible, but he wanted to go outside and enjoy the sunshine. Our relationship had shifted to patient and caregiver, and we were both frustrated, resentful and depressed. It was not a good situation but we loved each other so we pushed past, or tried to ignore, the rough patches. There were many times when I questioned if this was the right path, but we were somehow paralyzed. To change course on our path would have meant considering a nursing home, and we did not like that option.

The critical juncture in Ben’s path occurred when a respiratory problem landed him in the emergency room of Mount Sinai Medical Center in NYC, and he was admitted to the hospital. As fate would have it, and maybe as a sign that this difficult path was the right one, this happened just after the school year ended, and I was able to be at his side every day and frequently overnight. He chose to get a tracheostomy and a feeding tube. Of course, this was traumatic, and Ben could no longer speak or eat and was fully dependent on a ventilator. For both of us it was a difficult period of adjustment and reflection.

The ALS journey is never an easy one, and, after several weeks in the hospital, the path Ben chose led him to Mount Sinai’s wonderful Hertzberg Palliative Care Institute, where he received compassionate and wonderful care and he left this world with dignity, surrounded by love and music and even his favorite Disney decorations. And that, though definitely not easy, was right.

 

 

 

 

 

Finding the Pixie Dust

The following piece first appeared on the ALS Worldwide web site. Please click here for more information about this wonderful organization. I believe that those of us who have experiences with ALS need to share our perspectives to broaden awareness and promote involvement in helping to cure and manage the disease. 

groupmickey

Ben Carrasquillo was my husband, and since we shared a tremendous love of Disney, I think it’s fair to say that he was sometimes my prince charming and sometimes he was my monster. He will always beloved, as Buzz Lightyear says, “to infinity and beyond.” Ben died on August 26, 2015 after bravely fighting a six-year battle with ALS. Memories do give me great comfort, despite the tears they bring.

So many of my memories with Ben are from Walt Disney World (WDW). Our first visit there was Halloween 2001. It was our favorite holiday, celebrated the not-so-scary Mickey Mouse way, and we had so much fun, especially when trick-or-treating and trading candy like the little kids.

We went back many times and he even proposed to me on Halloween at WDW. Despite scooters, electric wheelchairs and assorted other challenges, Ben let his inner child shine and he indulged mine too. I loved that about him. The Disney magic gets you, and somehow we really did believe that Mickey could help. Maybe he did, because Ben did pretty well with the disease for more than four years. We were able to return four times after his diagnosis. Those visits really became about reliving and making memories that we could always hold in our hearts.

In July 2014, I took Ben to WDW for one last visit. I wanted to plan a trip that neither of us would ever forget. It had its challenges – we had to bring another caregiver with us – but Ben was determined to have an incredible time, and he did. We did some new things, like a nighttime cruise where we could watch fireworks and meet characters. I also worked with the fantastic WDW Floral and Gifts team to surprise him by having our hotel room decorated for Halloween. His face lit up when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights. He was completely blown away when I opened the door – it was like entering the Haunted Mansion. We kept all of the toys and decorations, and I brought them to his room in the hospital to recall those good times.

Although I cannot deny that there are tears for the ALS struggles and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing. I love the simple memories: Ben playing air guitar while the band played in the England pavilion at EPCOT, his trying on character hats and choosing t-shirts in the souvenir shops, our holding hands as we watched the fireworks displays, and his enjoying the freedom of getting around with the electric wheelchair.

Though some people look at the pictures and see how he became very thin with very swollen feet, and that he was wheelchair-bound, I see and remember the joy on his face.