ALS

Think Happy Thoughts? Listening to Peter Pan

 

ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Pre-ALS days

Peter Pan was originally released on February 5, 1953.  Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children?  I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!

The phrase “think happy thoughts” took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things.

For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe that helped him manage the disease pretty well for about four years.

On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!” So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.

I named my blog Pixie Dust For Caregivers because quotes like this, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and now, as I work through grief. They helped Ben, too. At times, they simply gave us much needed entertainment.

We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell.

After a respiratory crisis, Ben landed in the hospital, and life with a tracheostomy and feeding tube was not going well, including infections and pneumonia. After six weeks, Ben chose to go to the hospital’s palliative care unit.

It was painful beyond words to know that Ben was miserable. Tragically, ALS was not going away. He was not going to get better. But, to know that he had only days left in this world was devastating. At the same time, there was a certain relief that he would be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat, walk, use the computer or play his instruments- things he loved. A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.”  I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS.

Peter Pan said, “To die would be an awfully big adventure.” I don’t know that I would call ALS an adventure, but it was a journey. A very difficult journey that Ben navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.

Make a Wish

Halloween 2010
Walt Disney World

Our Disney friends do a lot of wishing and dreaming.

Cinderella told us, “No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.”

Jiminy Cricket advises us that, “When you wish upon a star, makes no difference who you are. Any dream your heart desires will come to you.” He also said, The most fantastic, magical things can happen, and it all starts with a wish.” Jiminy Cricket

Longing to be human, Ariel sings her little heart out, “Wish I could be part of that world.”

According to Snow White,
“Make a wish into the well
That’s all you have to do
And if you hear it echoing
Your wish will soon come true”

Peter Pan wished he never had to grow up.

Aladdin’s was trying to decide which three wishes Genie should grant.

And the list goes on…

Wishes are funny things. We wish on stars, on ladybugs, on birthday candles, on shooting stars. As we grow up, some of us start to believe less, or not at all, in wishes. Personally, I think some people just won’t admit that they still make wishes!  Think about how many times you hear someone begin a sentence with “I wish…” Maybe they aren’t being literal, but I think there is still that little part of all of us that wants to believe. For me, wishing is hopeful. You can call it childish naivete, but I’m fine with that. Wishes carry the faith that things will be okay. There have been times- especially when I was watching Ben and my dad struggle with their illnesses and I was also struggling as a caregiver- when I just needed to believe that my wishes and dreams could come true, despite what logic might have told me.

Walt Disney World
Halloween 2011

Ben and I never made a point of going to the Wishing Well at Cinderella’s Castle during our many visits to Walt Disney World. And then he was diagnosed with ALS. With a diagnosis like that, you’ll find yourself believing in a lot of things! Ben was diagnosed in April 2010 and in May we headed to Walt Disney World, not knowing how the disease would progress. We headed right to that Wishing Well, and we returned each time we went there after his diagnosis. I emptied a purse of coins into that Well each time, wishing that his ALS would go away, that we could turn back time, that there would be a cure. Did it change anything? Did his ALS go away? No. The disease took away his abilities one by one- physical devastation for him and an emotional toll on both of us. And, our happily ever after was cut very short.

So, how I can say that I still believe in wishes? Because my heart needs to.

Halloween 2010
Walt Disney World

When we went to Walt Disney World for the last time, in July, 2014, we went on the Pirates and Pals Fireworks cruise, where we met Captain Hook and Mr. Smee and then took a boat ride with a very funny pirate to watch the “Wishes” fireworks show from the water. Ben loved watching the fireworks at Walt Disney World, and the display really was pretty spectacular from the lagoon. When the “Wishes” song played, as we listened to the words, we both cried. For a lot of reasons.

In our hearts, we both knew it would likely be our last trip to Walt Disney World. The progression of ALS varies from patient to patient, so although we knew the eventual outcome, we did not know where the journey would lead from day to day. We just wanted to be able to wish on those stars and have our dreams come true. It’s that conflict between being realistic and being hopeful.

Excerpts from the “Wishes” Fireworks Show

Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.

Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.

CHORUS:
Wishes…
Dream a dream.
Wishes…
Set it free.
Wishes?
Trust your heart.
Just believe.

We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.

JIMINY CRICKET
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.

BLUE FAIRY
Remember, we must always believe in our wishes, for they are the magic in the world.  Now, let’s all put our hearts together and make a wish come true.

Pirates and Pals Fireworks Cruise Party
Walt Disney World
July 2014

 

Pirates, Walt Disney World,ALS

Ben loving the Pirates & Pals Fireworks Cruise.

I think one of the hardest things in life is feeling that there is no point in having faith in wishes and dreams. As Mrs. Potts told Chip in Beauty and the BeastYou don’t lose hope, love. If you lose hope, you lose everything.” So, I keep wishing and believing that my dreams can come true. Without that mindset, I don’t think I could have gotten through caregiving and watching Ben and my dad struggle. I don’t think I’d be able to envision working through grief. We wished for a cure for ALS as we tossed our coins into the Wishing Well, but that wish did not come true, at least not in time to help Ben. Of course, as Cinderella’s Fairy Godmother said, “Even miracles take a little time.” I will wish for that cure until it happens.

For me, as I’ve written before, the pixie dust may be in the perspective. Ben and I did have some wishes come true. For four years, Ben managed pretty well with the disease. He did not want to lose his ability to walk, but he made using the scooter and then the electric wheelchair so much fun. With Ben zipping around, we laughed our way through the Disney Parks. Although traveling to Walt Disney World became more and more complicated, he handled it with a great attitude and with determination to have a wonderful time, and he did. We always said we wished we could go there more often, and after Ben’s diagnosis, we were able to go there four more times, which was quite a treat and a splurge for us. We relived beautiful memories, created new ones and had a lot of laughs, along with some tears. And, we had a lot of love that got us through very difficult times. So, maybe there was some magic in that Wishing Well. And maybe the true magic was the gift of seeing love, laughter and light in a very dark situation.

Princess Aurora says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust. I hope you do, too, and I hope your wishes and dreams come true.

Walt Disney World
July 2014

The Things That Matter

There are so many things that conjure my loved ones and I hold onto those with much love and sentiment.  There is the Les Miserables sweatshirt my mom looked so cute in, along with her Paddington Bears and toy cars. I feel especially connected to my grandma when I use the rolling pins and cookie cutters that I used with her from the time I was a little girl. I hold dear the movie history book that my dad kept and updated with the death dates for the actors as they occurred. He was never interested in celebrities, so this always struck me as so odd but as endearingly funny and quirky as my dad. I love to look at his USMC cap and model of the F7 airplane he flew during the Korean War, as well as some of his books, including the book of dog breeds that we used to study when I was a girl. In my living room stands the curio cabinet that my great-uncle Davis made and my Tanta Rosie gave to me because I’d admired it since I was a young girl. Those are just some of the love-filled mementos I have of the past.

If you’ve been reading this blog, you also know that Ben and I loved to look at photos to revisit our days in Walt Disney World. I found web sites on which I could upload favorite photos and make a quilt, shower curtain and towel, so that he could always be surrounded by his favorite pictures and memories.  Now, those wonderful, magical times surround me.

Ben also had a huge and ever-growing collection of t-shirts, many of which I brought for him as little surprises. I could not part with them. I couldn’t keep that many t-shirts and wear them. I had them made into quilts for Ben’s daughter and for me. When I set mine out on the bed, it was emotional to think of what the t-shirts represented- the many Mickey’s Not-So-Scary Halloween Parties, places we visited, events we attended, and things he loved, like the Beatles. Now, it is a special feeling to wrap myself in those memories. For a while after he was gone, I continued to order t-shirts that I knew he would have loved. I’ve tried to curtail that, because without him here, they don’t bring the same joy, and I would soon need to make a new quilt!

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

The things that bring an unexpected sentimentality are the things that become most unnerving. Recently, it was Ben’s table, which was also his desk. He brought it with him when he moved into my apartment. I never liked it, and I tried to persuade him to let us get a new one. It was a somewhat beaten up, not terribly steady, unattractive folding table. He knew it was always on the verge of collapsing, but, it was comfortable for him and since he dealt so graciously with all of my dolls, how could I really argue?

Caregiving,Grief,ALS,Memories

This is Ben’s table waiting to be filled with cookie batter and lots of supplies!

Several months after he passed, I began to fix and redecorate the apartment. It felt too soon, but my tiny NYC apartment held many physical and emotional scars of ALS. I knew that it was a positive thing to do, but it also came with the guilt that making the changes, albeit necessary, might even slightly imply that I was happy he was not here and I could change things. I also wished that he could be here to enjoy it. I painted, recarpeted and got some new furniture. I also put up many pictures of Ben, continued to display his things and even framed one of his Beatles albums. He was a part of each decorating decision that I made and he remains very present here.

I thought it would be good to get a new table. I found a nice wood dining table that could be extended and I liked that idea because my intention was to start inviting people over. That was something we did not do when Ben was ill because he was self-conscious about having people see him and because the apartment was, frankly, a very cluttered disaster.

Given how much I disliked the table, I thought it would be easy to replace it. But, like the computer that sat on that table, it was like a lifeline to Ben. He sat at the table almost every day. I brought him to the table in the morning before I left for work, and brought him back to bed from the table each night. His little collection of Disney toys was on that table. He played around on the computer all day at that table. I fed him his meals at that table. I set his shaving things on that table as he taught me how to shave him (I can’t say I ever mastered it very well but Ben said I did pretty well). His birthday cakes and parties took place around that table. He looked at our Christmas tree from that table, and as I explained in a prior post, I placed his favorite ornaments on our tree so that he could see them from his chair at his table. Sometimes, after I put him to bed, I would decorate the table or place surprises for him that he would spot when he sat at the table. For example, one Halloween, I got him a Disney countdown calendar figurine and every morning, when he settled in at the table, he would see that I had moved the day closer to Halloween. The night before Halloween I put Halloween garlands and fake cobwebs all over his desk area. I also waited for him to go to bed to sit at the table and make my crafts, including making elaborate cards and gifts for him.  He knew there would be surprises and he loved to discover them.

Caregiving,Grief,ALS,Memories

Ben’s birthday, 2013, seated at his table. He loved peanut butter M&Ms but shortly after that photo was taken, he had to stop eating them.

Caregiving,Grief,ALS,Memories

Birthday cake, 2013, on his table.

There was a lot of history in that ugly table! I simply could not get rid of it. I decided to keep it, and to use it when I baked cookies and humentashen. I knew Ben would approve of that, because he loved when I baked and he even helped with the humentashen until ALS took the use of his hands. I folded the table and kept it behind my media cabinet. I placed his computer right on my new table and I continue to use it to play his music. I could never part with his computer. This Christmas, I put his fiber optic Disney tree in the same corner of the new table that he liked it to be on his table.

Caregiving,Grief,ALS,Memories

Holiday display on the new table, with Ben’s little Disney fiber optic tree in the same position that it had on his table.

On Christmas Eve, I took out Ben’s table to do my baking. Baking Christmas cookies gives me a lot of peace and I looked forward to doing this. As I started to set up the table, one of the legs broke off. I was devastated. In a panic, I got out my drill and tried to fix it. I took out my heavy duty glues, too. Nothing worked. I managed to secure the leg so that I could use the table anyway and just hoped that it would not collapse. I asked Ben’s friend to come over and look at the table. He did not seem too hopeful that it could be fixed but he could tell that I was heartbroken and said he could try to drill new holes. I was able to complete all of my baking and decorating, which was quite a relief. Ben would be delighted with these finished products.

Caregiving,Grief,ALS,Memories

The last batch of Santa cookies made and decorated on Ben’s table.

Caregiving,Grief,ALS,Memories

Chanukah cookies made on Ben’s table.

Caregiving,Grief,ALS,Memories

Mickey Mouse snowmen cookies. Also, the last ones made on Ben’s table.

Caregiving,Grief,ALS,Memories

The final assortment of cookies! My grandma and Ben would be proud!

On Wednesday, as I went to fold the table, the opposite leg broke off. I was utterly crushed. I realized that there was no way that the table could be repaired. Ben would not have been surprised. He knew the table was not in good shape but I think that, especially as the ALS progressed, he knew what was comfortable and manageable for him. I cried as I kept some of the nails and hardware and took the table outside to the curb. This eyesore of a table that I’d wanted to replace was the hardest thing to let go.

In caregiving and in grief, we are reminded to focus on memories that keep us connected to our loved ones and let us remember them as they were and as we were together. I’ve written about the wonderful memories that comfort me in the difficult times and memories of the ugliness of ALS. I am eternally grateful for the times that I could make my dad and Ben smile, or make their lives a little easier and more comfortable. Those moments are priceless reminders of the depth of the love we shared. The heirlooms and treasured objects also hold memories and affection. Then, there are the surprising things-the “stuff”- like Ben’s table, that touch my heart with the stories they tell. In love and loss, and caregiving and grief, all of these things matter.

Auld Lang Syne

January 1, 2017. I wish everyone a happy, healthy, and peaceful New Year. I’ve never been one to ring in a new year with lots of fanfare. Growing up, my family and I sometimes went to dinner and a movie, but celebrations were very understated and I liked it that way. With Ben, I loved to cook a fancy dinner and have a cozy night at home. Every beginning of a new year should be filled with promise. Should be.

After his ALS diagnosis, although we never really said it aloud, it felt like there was nothing good to look forward to. Being reminded of time passing is not a great feeling when dealing with a terminal illness.  There is no opportunity for a break when you’re a patient or a caregiver, so our routines were not altered during a holiday. I did want Ben to feel that things were somewhat festive, and I needed that, too. Decorating the apartment gave me a distraction but it also gave Ben a distraction, a change in his homebound environment, beauty to look at and whimsy. As his ALS progressed, there were no more fancy dinners, though we joked about my pureed creations. Our many Disney decorations surrounded us in beautiful memories. The ending of one year and beginning of another one came quietly and our only resolution could be to make the best of the time we had.

There was no way to know that our last New Year’s Eve would be December, 31, 2014. But, how wonderful it is that I can look back now and say that it was a very fun night that reminded us of the romantic, fun, and nutty times that defined our relationship. I ordered matching Mickey Mouse and Friends pajamas for us and even for Disney (from Pajamagram.com) Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. There is a brief video below. Don’t think it’s the video quality or the color calibration on your monitor, the fireworks really were that bad! It felt almost magical to laugh and enjoy the evening. And, it touches my heart still, that Ben woke up the next morning smiling and saying that he had so much fun. That silly celebration is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.

 

In my previous post, I explained that Auld Lang Syne is very meaningful to me. For last year’s holiday card, I placed photos of Ben at his happiest and most vibrant around the words to that poem. I needed to see that and I wanted people to remember him laughing and enjoying life. I still find that this gives me more peace than sadness. And, in the moments that it does bring tears to look at the pictures and think about the times we will no longer have, that’s okay, too.

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

On this New Year’s Eve, I did a bit of celebrating, which says to me that I am healing. Those feelings can be confusing, because my joy does not mean that I have forgotten Ben or any of my loved ones. Words are powerful, and I do not like healing to be described as “moving on,” because in my mind it means leaving things behind, and I have not left my loved ones behind. “Auld Lang Syne”  represents for me an opportunity to honor those I have lost and whom I miss, while I try to find my way in the present. I am very fortunate to have had these people in my life, to have felt their love and to have loved them. They have all helped to shape who I am. And so, it is with love, and joy, that I remember these special people and share some of their pictures. They will forever be with me in my heart, and will watch over and guide me as I take another step forward to welcome a 2017 that I hope will continue to find a better balance between grief and love, joy, peace, and laughter.

My mom and our Standard Schnauzer, Dulcie. My mom and I were practically attached at the hip and not a day goes by when I don’t think of her, even after nearly 25 years. Dulcie was the best and smartest girl and she is also missed very much!

My dad with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker. Both of my parents instilled in me a tremendous love of dogs and animals.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.