ALS

Birthdays…Memories

Walt Disney World, Grief, ALS

At the Crystal Palace

Today, October 27, is my birthday. My second birthday without Ben. I guess that I often measure time that way now. Last year, I preferred not to deal with the day, staying home and basically throwing the quilt over my head. To be fair to myself, it was merely 2 months after he died.  It’s still emotional to think of celebrating events without him.  But, this year I decided to take myself to London as a birthday treat. It was another milestone to travel again, by myself, and to make it easier I went to a favorite place where favorite friends live, too. Also, a place I’ve gone many times without Ben.  It might seem strange, but I am proud of myself.  I spent a beautiful and reflective week there and I will write about that in another post soon. Now I’m back, and facing conflicting feelings- that childish delight about a birthday mixed with the sadness of not having Ben or my mom, dad and grandma- the people I was closest to- with me, and guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten.

I’ve thought a lot about the wonderful birthdays I had with Ben. Several of them were spent at Walt Disney World during Mickey’s Not-So-Scary Halloween Party and the Epcot Food and Wine Festival. I am so lucky to have had that kind of love and those delightfully whimsical and magical experiences.  As I’ve said before, Ben let his inner child shine and he completely indulged mine. Well, my inner child isn’t so inner- it’s front and center of who I am!

Mickey and Us

Here are just some of my favorite Walt Disney World birthday memories with Ben:

The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.

Mickey has Four Fingers!

Mickey has Four Fingers!

The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.

Mickey congratulated us on our engagement!

Mickey congratulated us on our engagement!

Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.

Birthday cupcake Birthday Hugs from Tigger

The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.

Cinderella at Akershus

Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!

Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!

Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat.  His attitude was incredible.

I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve felt his presence over the past year and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right.

Tonight is parent teacher conference night at the school where I teach, which is kind of a good excuse to just tiptoe around my birthday. I do remember the one other time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.

Surprise Birthday

Despite all of the very difficult memories of Ben with ALS and in the hospital and hospice, I am glad to be able to recall with love and smiles, and yes, also tears, all of the wonderful times before our lives changed. Because those times tell the story of who we really were together.  Remembering that is indeed a most special birthday gift.

True Love

Ten Things I Learned About Caregiving From Mary Poppins

Since today, October 1, marks the 81st birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.

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.

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

Making a Memory

 

Film clip: The Parent Trap (1961)  Walt Disney Productions

In this clip from original Walt Disney Productions The Parent Trap, Sharon- actually, Susan- returns home from camp and is meeting her grandfather for the first time (he, of course, doesn’t realize this).  She wants to remember everything about him, including the way he smells.

This scene touches my heart each time I watch it (and when I watch the remake, too!). Memories do give me great comfort, despite the tears they bring. So many of my memories with Ben surround going to Disney films, Disney music, Disney stores and Walt Disney World.

After he was diagnosed with ALS, our trips to Walt Disney World (WDW) really became about reliving and making memories that we could always hold in our hearts. Every experience and every opportunity to take a photo became that much more significant. Those memories are what I have now- bittersweet, and sometimes not happy, but it was life and love.

As the ALS progressed, our trips to WDW became more complicated. By the time we took our last visit there, in July 2014, we were dealing with an additional caregiver, ambulettes to travel to and from the airport, assistance on the plane, an electric wheelchair, challenges with eating, and not being able to go on his favorites rides (The Haunted Mansion and Pirates of the Caribbean). Despite the challenges, Ben was determined to have an incredible time, and he did. I loved that about him.

I was fixated on planning a trip that neither of us would ever forget, filled with all kinds of surprises for Ben. For example, we took the Pirates and Pals Fireworks cruise where we could see the Magic Kingdom fireworks and he got to meet Captain Hook.  I knew Ben (and I) would miss being there for Halloween, our favorite holiday and our favorite time to be at WDW, so I worked with the fantastic Disney Floral and Gifts team to surprise him with our hotel room all decorated for Halloween. I remember his face when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights that he thought was a promotion for Halloween and he got so excited. He was completely blown away when I opened the door and it was like entering the Haunted Mansion, which Ben adored. I took tons of pictures and videos for him to enjoy. We also kept all the toys and decorations to decorate our home on Halloween, and I brought them to his room in the hospital to share good memories and Halloween.

I’m so grateful that we were able to relive memories and make new ones. Although I cannot deny that there are tears for the difficulties and ugliness that ALS brought, and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing and being my silly, romantic Ben. I also love the simple memories of that trip: 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 while I walked next to the electric wheelchair or as we watched the fireworks displays, 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.

It was too painful for me to decorate last Halloween- Ben had only passed away in August and it was too soon. I do love the photos, and I hope that one day I will want to decorate again and remember the way that we enjoyed it. Maybe this year. I’ll let you know.

Make a memory. Make many. They might be hard to think about or look at in the beginning, but they will be there to embrace if you choose to.

“Time Passed and Pain Turned to Memory.” True?

The narrator says this in reference to Cinderella's grief over the loss of her mother. Cinderella © Disney 2015

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

Only a few days ago I posted a video slide show of favorite memories of Ben. One year is a significant marker of time for me and I was very uptight as I anticipated the sadness that I did indeed feel when the day arrived. I don’t know what I expected to happen after I hit that marker, but I woke up the next day feeling so sad. I still feel down. Time has passed but pain has not turned to memory. Both are still quite strong. So, this quote from the 2015 Disney “Cinderella,” which was so powerful to me when I heard it and still remains with me, gave me pause and I had to think about it.

I relish the happy memories and cannot shake the pain of the devastating ones. If pain turns to memory, does pain go away?  Is memory really complete if it does not include the pain and the joy? Is it all a matter of time?  I would think that having lost my mom, my dad and my grandma- that I would be prepared for the flow of emotions that come with grief. I still feel pain at their loss, though I admit the sharp pangs have changed. But, I think that being the daily caregiver for Ben, and seeing the excruciating challenges of ALS, left an indelible mark on who I am as a person and how I see the world. I am stronger and more resourceful than I ever thought I could be, and yet, I am as much of a crybaby as I ever was. I’ve always placed a high value on being compassionate, even if I don’t know that I showed it all the time. Ben and I also were shown a lot of compassion, and it hasn’t always come from places I expected. Through this experience maybe I have a more open mind and heart. But my heart has also been somewhat broken by the cruel nature of the disease and the turmoil it caused. Maybe time will temper all of these dramatic feelings but I feel like as time passes, pain is entwined in memory but it doesn’t turn into memory.

I’m not sure of what my expectations should be of myself and how I handle my grief after a year. Should I consider the expectations people have of me and how I handle my grief from this point forward? Should their expectations influence me?  If so, even if I don’t feel very different all the time, should I act like the pain has just evolved into memory? Should I speak less about Ben? Should I let people see that I still have really sad moments? Should I stop looking back?

I can say that although the bad times are still ingrained in my mind, and I do get depressed, I also do feel a change within myself. I still feel the pain of losing Ben, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. I feel a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also trying to define my new “present.” While I am struggling with frequent episodes of drifting back to sadness and dwelling on my memories- good and bad, I have also begun to at least see a “forward.” I have to fight the idea that moving forward is disrespecting Ben’s memory and our relationship. That is an uncomfortable feeling that I have to learn to accept and navigate. Pain, sadness, joy, anger- a bevy of feelings and emotions- are all part of cherished memories and I do have faith that over time they will continue to shape me and lead me towards a bright future.

Love is a Song that Never Ends

From Bambi. (1942) Music by Frank Churchill Lyrics by Larry Morey Photo: Walt Disney Pictures

From Bambi (1942)
Photo: Walt Disney Pictures

Click to play

“Love is a Song that Never Ends”
Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

This is a song with words that I found comforting as a caregiver and now, in grieving and sorting through memories.

There were days that were hard, and neither Ben nor I were at our best with each other. I still look back on those days and feel sad. But, it’s difficult beyond words to need a caregiver, and it’s also difficult to be a caregiver.  We were both overwhelmed by the whole situation- the ALS and what it was doing to him, his ever-increasing need for care, the confines of a small apartment, and our relationship that felt like it was shifting from one of husband and wife to one of patient and caregiver. We had so much love, but it was at times overshadowed by sadness, fear, resentment and guilt. It was an emotionally trying situation for both of us.

As Ben’s physical health diminished, it was hard for both of us to feel hopeful, or cheerful, or “normal.” ALS is unpredictable in its progression. We never knew what difficulty Ben would face. Less use of legs? hands? arms? speech? swallowing?  Every day brought the possibility of a new or worsening condition. Nothing was going to get easier, though we hoped it would take a long time for things to get worse. We did try to adjust to the difficulties with humor, too.  Ben  was very entertained by all of the concoctions I made in the Cuisinart to accommodate his taste and need for finely pureed food. I became quite the creative chef!

It was often while reminiscing about our trips to Walt Disney World- such joyful and silly times- that we would be reminded of some of the best and most carefree parts of our 16 years together. Good friends and family to email or vent to, keeping a journal, and occasional therapy also helped!

Hope and love got us through very difficult and ugly times. Now, there is the hope that he has found peace and is free of the constraints of the disease, in a place where he can walk or run, eat, talk and sing. And love’s sweet music will always flow on in the form of beautiful memories.

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