ALS

Gratitude is a Superpower on Thanksgiving and Always!

2011- The first time we went to Fantasmic!

I have to admit that even thinking about Thanksgiving gives me anxiety. But here it is. Thanksgiving is a very difficult holiday for me because it reinforces that I’ve lost the family to which I was so close. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because 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, we did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. At these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

Of course, I always take comfort in Disney, so try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me. I can’t shake the hovering sadness that I don’t have my family. Much of the family that I do have is religious and judgmental, and I don’t feel comfortable with them. Ben’s daughters are not in touch with me, so that is another lost connection.

However, I am grateful to have amazing friends, and I will celebrate with them today. I am so fortunate to be included in the families of my friends and my friends are my family. And, I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings.

Every year, I talk to my students about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself when Ben and my dad were ill. Some of them have sad lives, especially at such young ages, so I like to see them respond to the idea of feeling grateful to receive a text that makes them smile, or that someone in class made them laugh, intentionally or not! It was nice to watch their faces light up as they raised their hands to share things they are grateful for- in Spanish, too! (well, I am a Spanish teacher!) Family is a sore spot for some of them, so they are happy that our vocabulary list includes music, candy, videogames, cell phones and other assorted things that they love.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  •  At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but 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. I treasure the knowledge that they loved me.
  • I am grateful for my cat, Disney. She has been there for me in good and bad times. When Ben was in the hospital, and I knew that he would never come home again, it was a priceless comfort to return home to her. Disney always loves to be hugged and I know that she was attuned to my sadness. I am now her caregiver, as she has many medical issues, but she has brought so much to my life and it is my privilege to take care of her. I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me!

Brave Disney during her hospital stay.

  • 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. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I 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 to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. The online experience is not really working for me, but I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My school plays music instead of ringing bells to signal the beginning and end of a class period, and my kids always love when I smile at the playing of “Twist and Shout,” sharing that it is the first song that Ben and I danced to- well, they’re teenagers- they love romantic stories! My stories sometimes help them share their stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and last summer I earned my certificate as a caregiving consultant. I am grateful to have met some terrific people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases.
  • I’m grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.

Happy Thanksgiving.

With all good wishes,

Abby

 

 

 

Happy 90th Birthday, Mickey Mouse!

Dear Mickey,

Happy 90th Birthday!

You may turn 90 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! Walt Disney said to remember that it all started with a mouse, and what a special mouse you are!

In the pre-ALS days, 2006

I miss my mom and Ben today. They would surely have joined in the festivities. I must admit that I feel pretty lonely. But, I’m celebrating the long history that we have and remembering wonderful, whimsical times with and about you.

Though you’re a few years older than my mom would have been, she 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! 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 and Epcot Figment 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 the office where we worked and met. 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 always treasured our visits to Walt Disney World, but after Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World, and we were so fortunate to be able to go four more times. 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. But, with you it was different. Ben always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional and tear-filled. With an ALS diagnosis, we wanted and needed 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 quietly handed me a “ruby” 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.

Mickey was always there to help Ben.

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. Deciding that he could no longer walk up to you was a sign that ALS was winning the battle. But, Ben also had an incredible attitude, never lost his smile and laughter, and he remained determined to engage in life, especially with you at Walt Disney World.

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

Mickey’s Not So Scary Halloween Party 2012

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2012- A subtle but significant change: Ben stayed in the scooter when he met Mickey Mouse.

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. Since he has been gone, you have continued to entertain, console and inspire me. I have to admit that this very auspicious occasion has made me a little sad because my mom and Ben aren’t here to help me celebrate, but my memories of our times with you keep me smiling, even though there are also tears.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

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

I will always love and thank you,

Abby

 

Halloween- Disney Magic and Memories

It’s here- Happy Halloween!

I dutifully counted down the days on my Halloween calendar figurine and here we are- today is Halloween. My fourth without Ben.  Being home with bronchitis is adding to my melancholy. I did find comfort and joy in using that figurine. It made me smile to think about how Ben loved it and it felt good to honor that tradition. Stuck inside, I won’t see kids dressed up or give my students candy, though that will happen when I return. I will look at our photos and videos, listen to my Walt Disney World Halloween music, and reminisce about how much fun we had at Walt Disney World on Halloween. Halloween was truly magical there- after all, Ben proposed to me on Halloween at Walt Disney World.  It was perfect!

I did bake Halloween cookies and make Halloween cards with a photo of Disney. As I’ve said before, baking and decorating cookies is like my therapy. I am able to relax and get lost in the whimsy. I tried hard to embrace my decorations (click here for that post), acknowledging that I was able to begin to embrace the Halloween spirit that, until this year, had left me along with Ben. Now, I’m more of a participant in the holiday, but I don’t feel the gleeful whimsy that I felt with him. I look at footage from Walt Disney World’s Mickey’s Not So Scary Halloween Party and although part of me would love to experience it again, I wonder if I will ever again be able to attend that celebration.

   

Without distractions at school, I’m surrounded by only memories, albeit good ones. Every year, I’ve made a calendar that is a collage of favorite photos from Walt Disney World. It was a very positive process to make these calendars. I made them for Ben when he was here, too, since he loved to be surrounded by our photos. As you can see, October is filled with Halloween memories. I rejoice in them because Halloween is a treasured part of our relationship. At the same time, I grieve for Halloweens and other events, and even non-events, that we won’t have. And, over the past several months, I’ve struggled with anger that he was cheated out of so much life.

The October collage on my calendar.

Understandably, the most poignant memories were during our visits after Ben’s ALS diagnosis.  I think about how Ben was embarrassed to meet Buzz Lightyear when he was in the scooter. Ben loved Buzz, but after ALS began to weaken him, he said he didn’t want to meet Buzz because Buzz was a strong super hero. I think he agreed to meet him more for me than for himself, though he thoroughly enjoyed watching Buzz interact with the kids on line and he had a child’s excitement. He was able to walk a bit with his cane at this point, and he wanted to stand with Buzz. We were never much for dressing up for the holiday, but Ben loved the Buzz shirt we found and I wore Minnie Halloween ears. Buzz made such a fuss over Ben’s shirt and he made Ben laugh, which made me so happy. Those are the important and beautiful memories. Ben truly did embrace life while facing death. Yes, some of that was denial, but much of it was inner strength and determination, and I believe it helped him to navigate life with ALS in a positive way.

I’m still proudest of our summertime Halloween- our last but most magical visit to Walt Disney World. Here’s a link to that post. I hope that it offers some inspiration to anyone struggling.

Ben did say that when the time came, he was going to be a grim grinning ghost at the Haunted Mansion. I hope he is and that he is having a ghostly good time.

I wish everyone a Happy, Not So Scary, and Healthy Halloween!

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

Mickey’s Not So Scary Halloween Party 2012

Disney’s “The Jungle Book”: Baloo, Bagheera and Lessons in Caregiving and Fighting the Shere Khans

Disney’s Animal Kingdom- 2001. Ben was psyched to meet Baloo!

Disney’s The Jungle Book celebrated the anniversary of its 1967 release just this past week on Thursday, October 18. Of course, I had to re-watch this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. It is also a sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! During my viewing this time, I thought about how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to hospice and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy, needing 24/7 nursing care. This was not an option we liked but it was one we had to accept. I could relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways, but love and devotion kept me at his side. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! But, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” And yet, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. Try to focus on those things when the stress becomes severe and you start to forget who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?

What The White Rabbit Did Not Know About Grief and Time

It’s been a week that I’ve had my old and new Halloween decorations up in my apartment (click here for last week’s post). I was most apprehensive about the Halloween countdown calendar figurine that I gave Ben, and I was prepared to return it to its box if it was too emotional to display it. Ironically, I find great comfort and connection to Ben when I dutifully change the number of days remaining till Halloween.  I can see Ben’s smile and I feel like I am doing this for and with him, taking pride in the knowledge that it is a gift that he absolutely loved and that brought him joy at a very unjoyful time.

I’ve been thinking about how is was the first time in the three years since I lost Ben that I was ready to have any Halloween decorations. I cannot explain why, at this point in time, the countdown calendar figurine gives me a sense of connection to Ben in a good way and yet, other things continue to upset or unnerve me, conjuring the memories of the pain of loss. I’m still not ready for some of the items in our collection and I don’t know if I will ever be ready for the things that I brought to decorate Ben’s hospice room. Only time will tell. But, should there be a time limit at which point I should without a doubt be able to cope with all of this?

They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. The White Rabbit in Disney’s Alice in Wonderland says, “I’m late, I’m late, for a very important date.” I have felt like that as I have dealt with grief, except that I never knew what date to set or if, in fact, any such date exists. There is always the sense of measuring how long it will take to get past the pain. When loss was very new and raw, I simply wanted just to get to a point where grief became easier. When I wasn’t wondering when I would feel better, or if I should be feeling better than I did at any given time, other people were placing a time stamp on my grief. There are always the people who remind you that it’s time to “move on,” which is one of my least favorite expressions. Those dates have been based on their own experiences and opinions, and sometimes even on their own comfort level with my grief. The thing is, everyone handles grief differently and in their own timeframe.

I have always asked myself if I’ve been handling grief well. I ask myself if I should still have such a hard time celebrating Halloween without Ben. Time has allowed me to joyfully embrace some memories but not others. Should it be different? Have I missed a deadline for grief to subside? I really don’t know. On a day to day basis, although I have bad moments and bad days- especially on milestone dates- I feel like I am functioning just fine. I have always been a person who cries easily, so I cannot measure grief by tears. Still, I constantly question and assess myself. To me, the fact that I made the decision to welcome Halloween this year is a good sign of progress. It seems okay to me that some things are easier than others. I test myself, as I did with Ben’s Halloween countdown figurine and, sure enough, it is actually making me happy. If I’d decided that I was not yet prepared to display any Halloween things, would that have been okay, too? Should I be rushing or worrying that I’m late to coming to terms with my new life and new normal?

How long should grief last? How can we say? Grief began the day Ben was diagnosed with ALS. We grieved our life as we knew it, we grieved the future that we wouldn’t have, we grieved each ability that Ben lost as a result of the disease. After he left this world, I grieved his loss, and I grieved the loss of purpose that I had as his caregiver. This weekend, I was reminded that for at least a year after Ben died, each time I did venture out into the world to socialize, I cried on my way home. I remember that on one of my first outings, I cried on my way to the subway, because in addition to missing Ben, I also realized that being alone and returning home by myself had to be my new normal. It also scared me that no one would even know if I arrived home.  It took me more than a year to begin to establish routines. I tiptoed into life, testing the waters to see what felt comfortable, worrying that I was not progressing quickly enough. On Friday night, after attending a Broadway play, I walked to the subway and thought about how I have become more comfortable with my new normal. I don’t experience the same pains and anxiety to return home alone. I don’t love it, and I do hope that one day I will find love again, but I embrace the good and bad days and moments simply as part of life.

I see a lot of comments on support groups from people whose family and friends make them feel like they either haven’t grieved long enough or they’ve grieved for too long. As I see it, there is no such thing as an appropriate time to grieve. That said, I did seek therapy and join grief support groups after the loss of my mom and of Ben, because I felt like I needed support with getting back to living. I think it’s perfectly appropriate to seek help if you feel that you need support to function in a manner that you think is appropriate and that gets you from day to day. It was helpful to me to talk to others who were in a similar circumstance, though it did at times fuel our insecurities to compare our experiences coping with grief.

People have asked me if I often still think of Ben. Yes, I think of him every single day, and I often talk to him and about him. It feels right to me. Some people feel that I shouldn’t still be thinking of him so frequently because it’s dwelling on the past and it keeps me from “moving on.” Frankly, I am not moving on and leaving Ben behind. I am moving forward, continuing to live but having been shaped by my love for and experience caring for Ben. Some widows and widowers share my experience and others say they don’t think about their spouses as much anymore. I’ve heard people make negative comments about those who have lost spouses and have found new love within several months. I am not aware of any formula or correct answer to any of these situations. There should be no judgment, and if there is, please keep it to yourself.

I have not wanted to return to Walt Disney World without Ben, although I do miss it. I still cannot imagine attending the Halloween festivities without him because that was truly our time, even marked by his proposal one Halloween. But, I don’t rule out a return. In fact, I do feel a tug of wanting to go and to feel the connection to Ben at a time other than Halloween. I guess I’m not like the White Rabbit. I’m not setting any dates or deadlines on how I deal with grief and its integration into my life. I have not set a deadline for myself and I will not accept a deadline set by anyone else. There are times that I feel that I’m not where I should be, and at other times I feel like I cannot rush myself, following my emotions and experiencing life on my own terms, and although I’m not always steady on my feet, I’m stepping forward every day. In my opinion, White Rabbits around me can turn off the alarm and relax , because when it comes to coping with grief there is no finish line, because it never completely passes. What’s more important than deadlines that I might have missed is that, in my own time and in my own way, I am more welcoming of the creation of new memories.

Halloween 2012