ALS

My Milestone Jaunt to London

Firsts are always hard. The one year anniversary of Ben’s passing away. His first birthday that he wasn’t here to celebrate. My first birthday without him. Every “first” milestone has been a hurdle to overcome. The same can be said about my first solo travel jaunt to London earlier this month to celebrate my birthday. I was a very independent traveler before I met Ben, and London has always been a favorite place to go, especially because I have wonderful friends there. Since I never went there with Ben, I felt like I would not have constant distressing reminders of things we used to do together.

I had such conflicting emotions as I made my plans- I was excited yet I did feel the alone-ness. Every reservation was daunting and decision-making was so difficult. Having been someone who enjoyed traveling by myself, it bothered me to feel that way. I do, however, have amazing friends here and in England, who supported and cheered me on in my planning.

I became apprehensive about the whole trip when I felt terribly lonely on the way to the airport. The apprehension led to near regret at the first sight of someone in a wheelchair, which had me in tears because it brought back so many memories of getting Ben to and around the airport and security and then, onto the plane. I tried to stay focused on how terrific it would be to see my friends and do things I love- see theater and ballet, shop and walk around the city I love. I told myself to be proud for making the journey and acknowledging it as a milestone in dealing with my grief. I repeated my usual mantra, as Christopher Robin told Pooh, “You are braver than you believe, stronger than you seem, and smarter than you think.”

Landing in London and seeing the signature taxis was indeed exciting. Upon arrival at the hotel, the staff was very friendly and I said I was happy to be back. When they asked why I had not returned in a long time, I choked up as I said that my dad and my husband both had been ill. You just never know when the triggers of sadness will hit. I went to my room wondering if I’d made a mistake and was not ready for this trip, but was greeted by a gorgeous flower arrangement sent by my friends. It brought a huge smile to my face and reassured me that I was not alone and I am fortunate in so many ways. The staff was also very kind and kept tabs on me throughout my stay, even when they saw me in the neighborhood after their shifts. There really are great people everywhere.

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I visited with my friends Penny and Jeremy the day after I arrived. It was wonderful to see them and it felt good to talk to them about Ben, and the good and bad times.  It helped me see that I will always carry Ben with me as I continue to move through life. I do sometimes wonder if I dwell on the past to the point that I am not fully engaging in the present.  But, I took a big leap by going away, and surely, that is a good sign that I’m doing better.

Whiteleaf Cross, Princes Risborough, London,grief

Penny and I at Whiteleaf Cross.

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Jeremy and I at Whiteleaf Cross.

How fortunate I am to have friends that are like family living around London! I’ve known Penny and Jeremy’s daughters, Eleanor and Florence, since they were babies and they will always be little girls to me, but it touched my heart to see what lovely women they have become. I was able to visit Eleanor where she teaches, in a most amazing school, Christ’s Hospital. Click here if you’d like information about his historic and fascinating school. I met Florence in the heart of London, where she is living my dream of living and working in London!

Walking through London and visiting my favorite places, I found that I was looking at them through Ben’s eyes. I made mental notes of what Ben would like, and what he would say and do. I took pictures that I knew he would have taken. I have always loved the British use of language, and I know he would have chuckled as I took such delight in hearing the very well-worded explanations, directions and commentary. It was so nice not to hear constant cursing that I feel surrounds me in NYC, and I had to laugh that when I did occasionally hear it, the words were often coming from my own mouth!

London,Double decker bus,grief,caregiving

Ben would have photographed every phone box, mail box and double decker box in London! So, when I saw these together, I quickly snagged the shot!

When I began planning my itinerary, I knew that at the top of my list would be a visit to the crossing at Abbey Road, made famous by The Beatles album cover.  I had never done that before, but I know Ben would have loved it and I wanted to go in his honor.  As I approached the crossing, a purple double decker bus also approached. Purple was our favorite color, and I had never seen a purple double decker bus before in England (and I only saw one other one on my last day in London), so I truly believe that it was a sign that Ben was with me. I understand that not everyone agrees with that thinking, but it makes sense and is comforting to me.

Abbey Road,The Beatles,London,grief

The purple bus that approached the crossing at Abbey Road as I arrived. I believe it was a sign!

On the rare occasion like this, when I did want a picture of myself in the crossing, it is especially lousy, and almost embarrassing, to be alone, but I was grateful that some nice students were willing to snap my picture.

Abbey Road,The Beatles,London,grief

The famous crossing! It really was a fun thing to do and extra fun because Ben would have loved it.

 

The Beatles,Abbey Road,London

I found the Abbey Road Café (which is not on Abbey Road- go figure), where I saw that they had a Halloween display. Ben would have loved the combination of Beatles and Halloween things and would have taken photos, so I did, too.

While sad not to have him there to enjoy it, I did feel that I was honoring him with every step I took. I needed to do that. Knowing how much fun it would have been for Ben, and that I’d gone there just for him, felt good and right.

Of course, I had to visit the Disney Stores in London. I’d done my research, and I knew there were 3 in central London. I visited the first one in Covent Garden on my first day of wandering around. The emotions are always conflicting: excitement about being there knowing that Ben would also be so excited, yet overwhelming sadness and loneliness because, in fact, he was not there. At Harrod’s, I was so happy to find an exclusive Mickey Mouse toy. I walked proudly around the store hugging it and one of the sweet saleswomen chatted with me about this Disney Store within the landmark Harrod’s. I guess my enthusiasm was apparent, because before I left with my new Mickey and an Eeyore who just had to come home with me, she handed me a little card that said, “Have a Magical Day” and “My First Visit to Harrod’s Disney Store.”  I could vividly picture Ben laughing about it the way he did when I waited on line for stickers with all the little kids at Walt Disney World. I often felt on the brink of tears, sometimes giving in to them and at other times finding a way to smile at the thought of how he would react. As I write this, I wonder if including thoughts of him in everything I did was a way of allowing myself to be happy on this journey.

Disney Store, Disney, Mickey Mouse,Minnie Mouse,London

Exclusive Oxford Street Disney Store Mickey and Minnie. Quite regal, don’t you think?

Disney,Disney Store,Mickey Mouse, London, Eeyore,grief

Exclusive Harrod’s Mickey Mouse! So adorable! I love Eeyore, and this little guy asked to come home with me. Eeyore is holding the card I was given marking my first visit to that Disney Store!

I went to the theater and to the ballet almost every night, which is one of my favorite things about London. These are things that Ben enjoyed but that are my passion. I was even able to get a ticket to both parts of the very popular and sold out “Harry Potter and the Cursed Child,” which I consider an intervention by my dad and Ben! And yes, also my friend Ed, who kept telling me to stop by the box office. The show was absolutely incredible.

Ben loved history and I know that he would have enjoyed tremendously the sights and sounds of this London. It makes me sad that we never got to visit this enchanting city together. I missed Ben’s company strolling the streets and neighborhoods of London even though I did feel like he was with me. I missed sharing favorite places with him. I wish he could have spent time with and gotten to know the friends he knew were so important to me.

When I felt lonely, I did text and email my friends, who were totally amazing and supportive, as they have been throughout my entire experience with Ben and ALS and now, with grief. I have not completely given into happiness but I am now finally coming out the other side of the caregiving and loss. I have come to dislike the expression “moving on” because I feel like it implies leaving something behind. I’m not leaving Ben behind. I do “keep going” because I’m still here and that does come with some guilt. But, I hold in my heart who he was, and who we were together. Those memories and feelings came with me to London. They allowed me to gain a new perspective on the London that I love and to have a great time despite the emotional roller coaster. They will help to shape this new phase of my life. That thought actually gives me some peace and comfort and lets me look toward the future with growing confidence and optimism.

The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic.  This time, it also brought a sense of hope.

The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic. This time, it also brought a sense of hope.

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.”

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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.”

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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.

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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

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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!
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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.”

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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.

Are Your Emotions All TANGLED?

Tangled, 2010
Walt Disney Pictures, Walt Disney Animation Studios

So often I wished I could go back in time to the  pre-ALS and pre-cancer days. Of course, Ben and my dad undoubtedly felt that way, too!  As their caregiver, I had a very hard time finding a balance between time for Ben and my dad and time for myself. I don’t think that I ever did. I didn’t see my friends much, and I was very excited when I was able to go to the theater, ballet or dinner. This could only happen if someone (usually Ben’s daughter) would stay with him. Ben wanted me to do things for myself that made me happy but also hated that he was primarily homebound, which I completely understood. He did not want to have to depend on me, he wanted to be well and independent. We both struggled with guilt and resentment. There were many tangled emotions. I felt just like Rapunzel who was conflicted about wanting to be free but wanting to do what she thought was the right thing and obey her mother (the clip above). I wanted the freedom to have some semblance of a social life, yet I felt completely guilty and nervous about going out. At a restaurant, my phone was on the table in case someone had to reach me. At the theater, intermission was the time I would check my phone, call or text to be sure everyone was okay. I even slept with my phone next to me in case my dad called. At work or during errands, my phone was in my hand or pocket, just in case Ben or my dad needed me.  I enjoyed time on my own, yet I always felt lonely and worried, and I couldn’t keep my thoughts from drifting to how life would ultimately be without them.

Now, too, I have “ups” where I go to a Broadway show or the ballet, or I make plans without having to consider caregiving responsibilities. But those “ups” are followed by such lows that are the grief, and it comes with a sadness that looms over everything.  The role of caregiver comes naturally to me, and despite the stresses, I believe that caring for Ben and my dad was the best and most important thing I have ever done. It meant the world to me when I felt that I’d helped them. I’m floundering now that I do not have to fill that that role, though I will probably always question whether I did the best job I could do. I’m pushing through the lows because, after nearly a year, I know that I need to join the land of the living.  I have begun to want to do things and see my friends. I figure that the joy and stability will come in time if I “just keep swimming, just keep swimming, just keep swimming.” For now, the emotions are still tangled.

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When Life Gets You Down…

Just Keep Swimming, Dory, Finding Nemo

©2013 Disney•Pixar

For anyone who has reached their saturation point on Dory and Nemo this summer, I apologize (though I do question it!!). But, if you’re here on this blog, chances are you agree that Dory is one insightful sweetheart of a blue tang!

One day, I was playing the soundtrack to “Finding Nemo: The Musical,” (the show at Walt Disney World) and when I heard Dory sing, ” Trust that if you just keep swimming, just keep swimming, life isn’t all that grim,” it resonated in a whole new way. At times I felt completely overwhelmed by the amount of assistance Ben required within the limitations of our very small NYC apartment.  At times it was emotional- it was devastating to see Ben struggle to do things we all take for granted- use his fingers, his hands, his legs, swallow. ALS is a cruel disease. Sometimes my own  physical challenges in helping him became overwhelming- he needed to be transferred to and from bed and chairs, among other things. There were the times I had to call 911 for help. Thankfully, Ben did not get physically hurt during those incidents, but the emotional toll was painful. I broke my shoulder in 2012, and had been in physical therapy for more than 2 years with back problems, so at times we simply had to laugh at my unskilled and klutzy efforts to demonstrate physical strength.  I just had to remember to “just keep swimming, just keep swimming, just keep swimming.”  Somehow, picturing Dory saying that was so much more motivating (and cuter!) than just trying to run a recording of  my own voice in my head.

I had to think fast, or at times not to think at all, but just dive into auto-pilot. This is not to say that I “kept swimming” in good cheer all the time. As incidents arose, sometimes through tears, I would get the job done. I had my breaking points, emotionally and physically, but I kept going. In retrospect, it kept Ben confident and comforted that I was reliable and devoted support, and it inspired me to try to stop thinking so much about worst case scenarios, because I seemed to just swim through them.

I had to go with the flow with my dad, too. He had cancer but was also elderly and living alone. He was very nervous about being ill.  We spoke on the phone many times every day. I took a train to see him at least every weekend, and would do his food shopping and take everything on the train when I visited.  I would go to his local store to pick up other things. During my free time at work, I called him to check in and remind and encourage him to eat. There were times that I would hang up the phone and just cry. But, when I could pull myself together, I would come up with a plan. It wasn’t always a great plan, and I sometimes felt like I was belly-flopping, but it kept us swimming.

In my grief, I also find that I have to just keep swimming. I have bad days and better days. I have indeed let the undertow drag me down at times. But, it has been nearly a year and I have managed to keep my head above water and not drown. (how am I doing with the swimming references?)  I have great friends and have participated in support groups where I have met lovely people with whom I am still in touch. Some of the amazing people who took care of Ben are still there for me, for which I am incredibly grateful. I now see more glimmers of good days. Dory had some great advice that has helped me to go with the flow as I adjust to and redefine my life.  I hope it helps you, too.

How are YOU doing?

I welcome your comments. If you do not see the Comment form at the bottom of this post, click on the title of the post, then scroll to the bottom of the post and it should appear. Thanks.