Finding the Pixie Dust in Difficult Milestone Dates

ALS,Walt Disney World
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Today, July 6, marks the eighth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this is simply- or maybe not so simply- the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. Even after all this time, I still wake up dwelling on events that occurred on that morning, when Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with a  Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

In a post from a previous year (click here to read it) I recalled the details of that time. For a few years, I needed to rehash every one of those moments on this day, in particular. It was part of the way I processed grief and felt that I was demonstrating my loyalty to and love for Ben. I still struggle with that, but today I realized that I am finding a better balance between recalling memories and creating new ones. I do look for signs that Ben is with me and that he is okay with how I am living my life. I often ask him for signs.

I made plans to see one of my very favorite singers- Liz Callaway- at one of my favorite venues in New York City- 54 Below. I have loved Liz Callaway’s voice since the first time I saw her in the Broadway show Baby in the 1980s. Her voice is my go-to if I’m feeling happy, if I need a good cry or just want to get lost in beautiful tunes. It still feels a little uncomfortable to plan to do something where I will enjoy myself on a day that is definitely not enjoyable. But, as I have explained, I have begun to push myself and embrace however I feel. I actually went by myself, and although this highlighted my loneliness and aloneness, I liked the idea that I could just listen and relate to the music without being social or bringing anyone else into my thoughts. I don’t want to hear from anyone the cliches that I should keep living, that I should distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter.

As I said, I look for signs that Ben is with me and that I am making good choices that Ben would approve. Liz gave me several at this concert of “Screen Gems.” She began with “When You Wish Upon a Star.” A beautiful Disney song and one I have blogged about! I knew I was in the right place and Ben was right there with me. Liz also sang “Singin’ in the Rain,” which conjured such fun memories. Ben and I loved that film and it was one of the first two DVDs he gave me when he gifted me my first DVD player when we were dating. Ben loved to imitate Lina Lamont, saying “And I caaaan’t stand ‘em,” whenever I would complain about someone. If you haven’t seen the film, or it’s been a while, please treat yourself! Surprisingly, she sang a song that I love, from one of my favorite films- “It Might Be You” from Tootsie. Ben knew that it was my number one film when I needed to cheer up and it always made him laugh that I could even hum the score and would start laughing uncontrollably before the funny lines were even said, also saying them along with the film. It made him laugh that my dad and I made each other laugh quoting the film. I was happy to learn that Liz and her husband considered the tune “their” song. Another gorgeous song she sang was “The Place Where The Lost Things Go” from Mary Poppins Returns. That song, and the film, were very meaningful and poignant for me, as they were for Liz. She talked about the loss of her mom, which touched my heart, particularly emotional now because my mom’s birthday would be July 8. After I saw the film for the first time, I wrote a blog post about this song, which you can read by clicking here.

There was a lot of other beautiful music, laughter, joy and memories. In fact, Liz sang “The Way We Were,” evoking all I was thinking about the many memories that live in my heart.

As the happy, bittersweet and sad memories played in my head while I enjoyed the music, I realized that I was actually making a new memory by going to the concert. I feel the comfort of Ben when music- one of his true passions- brings up a memory of our relationship. Disney will always be ours. Ben knew how much I loved Liz Callaway and I know that he would be happy that this evening, I found peace in her music. The past was with me in my heart, but I am living in the present. As I see it, that’s a lot of pixie dust.

I miss and love you every day, Ben.

Thinking about ALS and Independence on July 4th

Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

I also can’t help but think of independence as it relates to ALS. It was on July 4, 1939, now known as Lou Gehrig Appreciation Day, that the renowned Yankee player stated at Yankee Stadium: “For the past two weeks you have been reading about a bad break. Yet today I consider myself the luckiest man on the face of the earth.” I think I will always be in awe of his grace and dignity. Of course, I saw it in Ben, too.

ALS,Lou Gehrig,Yankees

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

July 2014 Walt Disney World

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. In the process, I compromised my own independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom.

For a long time, I could relate to Megara from Hercules, who said, I’m a damsel, I’m in distress, I can handle this. Have a nice day.” Sometimes, I feigned independence and being “fine”  to try to convince others that I was okay, either for their peace of mind, because I did not want to confront their judgments and unsolicited advice. Sometimes, it was to convince myself. I owned my pain- I still do- but I have also learned to be unapologetic for my timetable and ways of processing grief. Independence originally felt like loneliness. It felt like I had no purpose, and I did not want to be my own purpose. Only now, nearly eight years later, am I more comfortable with the concept of independence. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence and to support others who struggle with this. I blog, volunteer and do freelance consulting to maintain my deep connection to people who are experiencing ALS, as patients or caregivers. I am writing a memoir and workbook for caregivers and introducing in my school small initiatives to assist students who are family caregivers. Although Megara used her independence as a way to fend off people and not admit that she was vulnerable, I feel that embracing my independence has made me more able to communicate, admit when I need help, and build a new loving relationship. The challenge is finding the perfectly imperfect prince!

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let us take this time to honor and support those who struggle with independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

Wishing well at Walt Disney World July 2014

Happy and Hopeful Independence Day.

Tinker Bell and I wish everyone a happy and hopeful Independence Day