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June 18, 2017

Father’s Day Without My Dad

My dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.

For the past few years, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday did not really bring me down. This year, however, I’m feeling very sad, and I’m not sure why. Maybe it’s because despite his own attitude, which I tried to embrace, I do miss him on this day, and fighting my own feelings amplifies the sadness. Maybe I’m feeling the sadness more this year because after he died I was caught up with caregiving for Ben, and then with his loss, too, so I went through motions without really focusing on the event. Sometimes, it simply- or not so simply- upsets me that the people I was closest to are not here anymore. I do believe that they are always with me, and watching over me, and that is a comfort. But, there are those times that I just want to pick up the phone, or feel a touch. My dad and I spoke several times a day. I miss that. And it still hurts, three years later.

I don’t fight the grief, but I also do not want to dwell in it. I just keep swimming. I let myself feel. I understand the grief and its unpredictability. It helps me to summon the loving and good memories because I never lose sight of how fortunate I am to have them.

I always visited with my dad on Father’s Day. I brought his favorite foods from Zabar’s, documentaries that Ben would make on DVD for him, and books because he loved to read. Usually, the books were about WW2, but sometimes they were humorous books, particularly Jewish humor. I loved his giggle as he would read me the jokes. As he became more ill, I read aloud from some books and we watched movies together. On the night he died, there was a television broadcast of “Mrs. Miniver,” one of his very favorite films, which has become one of mine, especially because of memories of watching it with Daddy. It seems to be on television every year around the anniversary of his passing. It feels like a sign that my dad is with me. I have the DVD of the movie and I watch it when I want to feel close to him, so I will watch it this evening. And then, I will probably watch “Guess Who’s Coming to Dinner,” another movie we joked about, and “Tootsie,” because it is my favorite cheer up movie and one that also made him laugh so hard that he quoted it frequently. I guess movies are very emotional for me. I have to admit that my dad did not like animated films and he never really understood my love of the Disney films, though he did have a healthy respect for Mickey and Minnie and their friends, and he loved to watch the videos I showed him of Ben and me at Walt Disney World because he said he loved to see us so happy and to hear me laughing.

I’ve been looking through old photographs because I do take great comfort in that, despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, is a joy.

So hard to get him to pose seriously!

Today, I will try to remember that Daddy never wanted me to be sad. I cannot count the number of people who stopped me to tell me that I was my dad’s world. And, since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. He would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

I love you and miss you, on Father’s Day and every day!

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

June 9, 2017

Happy Birthday, Donald Duck! And, Thank You!

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, Disney, Donald Duck 1 Comment

Happy Birthday, Donald Duck!

Remembering Donald’s birthday prompted me to yet again revisit all of our photographs from Walt Disney World. I have been feeling a little emotional these days. I think it is the nearing of the two year anniversary that Ben went into the emergency room and everything changed. Summer also signals the anniversary of the summer spent at the hospital and the summer that Ben succumbed to the ALS. It’s never been my favorite season- I hate the heat, but now there is the added set of memories. I definitely feel a certain level of anxiety, but as Dory taught me, I just keep swimming.

I find myself poring over the photographs with a smile on my face, and yes, also some tears. Donald was always so much fun at the meet and greets. And, being a Spanish teacher, I did especially love when he was at the Mexico pavilion at Epcot.

I share these photos because photos and memories have played such an important and positive part of my dealing with the rough times of watching Ben decline as his ALS progressed, and dealing with grief. It does not mean that I don’t get upset or lament the times we will never have. But, I also think about how lucky we were to share this love of Disney that always shed much needed pixie dust on our lives. Donald is part of those special memories that comfort me. So, with gratitude and joy, I say Happy Birthday to Donald Duck.

June 5, 2017

New Chairs- Old and New Memories

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiving, Disney, grief 2 Comments

I’ve written about changes I made to my apartment after Ben passed away. The painting and recarpeting had to be done- the ALS battle scars were so huge. There are things I’ve displayed and put on the walls that remind me of him and of us and I love to be surrounded by these things and memories. But then there was his table, the ugly table he used as a desk that even he didn’t like. I thought it would be easy to replace it, and I picked a little dining table that I was excited about. But, when I started to think about not having his table anymore, it was very emotional for me. I decided to keep it and use it for baking, because Ben would love that. To read my post about what happened to that table, and things that matter, click here.

I have been looking for dining chairs since I got the new dining table. Imagine my delight when Ethan Allen launched its Disney line (click here to visit the site)! I fell in love with the Mickey Mouse dining chairs and had to order them. I thought about replacing Ben’s desk chair, because the foam on the arms is completely falling apart and it is not as sturdy as it used to be. That chair holds many memories, some good and some bad. I sit in it every day and remember how that chair functioned as Ben’s desk chair and, also, as his wheelchair, because it was narrower than a wheelchair and could get through the narrow doorway to the bedroom. I dragged the rolling chair to and from the bedroom every day. I transferred him from that chair a few times a day. We always worried that it would collapse, and thank goodness it never did. He sat in that chair all day. I fed him meals, shaved him and we watched tv and had our conversations while he was in that chair. I still find myself looking at the chair and talking to Ben when I need some kind of an answer or sign from him. The thought of not having the chair here made me cry. The chair is staying. The memories, good and bad, and the smiles and tears, are part of what our life was with ALS, and it all matters.

The chairs arrived on Saturday. They are beautiful. Ben would love them. But, right now I am coexisting with them. They don’t quite belong yet. It’s like the holiday ornaments I purchased when I went to London in October (click here for more about that.) I tried to create the tree exactly as Ben and I had it, with our ornaments in precisely the places where Ben liked them because he could see them from his desk. The new ones were jarring. Now, these chairs are jarring. It’s hard to enjoy them completely without Ben. I know in my heart that he would be happy for me. But, he’s not here to enjoy them with me, so it’s kind of bittersweet.

I know that I have to create new memories in my home. I still struggle with that. I hope that my friends will visit and enjoy the chairs and meals that I will prepare. And, as we look around the apartment, I do hope that they will also feel and celebrate Ben’s presence. As I find new ways to relate to Ben, I know and take comfort in that he will always remain a part of everything I do.

I always picture Ben like this, in his chair at his desk. The chair stays!

May 31, 2017

ALS Awareness Month- Never Lose Hope

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, ALS Awareness Month, Beauty and the Beast, Disney 0 Comments

“You don’t lose hope, love. If you lose hope, you lose everything.” – Mrs Potts , Belle’s Magical World

ALS Awareness month comes to a close today, but patients, caregivers and loved ones of those with ALS continue to live with the physical and emotional effects of the disease. August will mark two years since Ben left this world, free from his struggle with the disease. I want to conclude this month by offering this wisdom from Mrs. Potts of Beauty and the Beast fame.

I have written often about Ben’s bravery and persistence. It has taken me a long time to come to understand that I was brave in a different way. And, I can honestly say that hope played a tremendous part in our lives. There was hope that things would get better and we would find innovative ways to help him eat, use his electronics, and maintain a good quality of life. There was hope that the next day would be less stressful. There was hope that each day would have some smiles and laughs. There was hope that I would remain patient. There was hope that Ben would accept that his needs were increasing. There was hope that he would have more time. There was hope that the disease would progress slowly. There was hope that he would transition peacefully.

Was it naïve to hope? Was it like my tossing coins in Cinderella’s Wishing Well? I don’t think so. To wish is to hope, and I have often written about wishes on this blog. Hope allowed me to reach for optimism. It allowed me to see the positive things, even if the big picture was not good. It allowed me to recognize and be relieved and content that one day was better than the prior one, not because the ALS was getting better or going away, but maybe because we were in better moods or successfully solved a problem. Hope allowed me to fantasize in a healthy way, remembering wonderful times and trying to recreate those and create new ones. It allowed me to be a creative thinker. It allowed me to smile, even through tears.

Hope was my pixie dust. Because I had hope, I was able to open my mind to finding ways to help Ben and to help myself. Hoping beyond hope that Ben would transition peacefully gave me the mindset to work towards making that happen. Love let me cope with the moments when hope was waning.

Hope also has helped me get through grief. It has allowed me to envision a positive future without Ben but with love. It allows me to seek opportunities to help others who are dealing with ALS.

I still have hope and I do make wishes. I hope that I always honor Ben’s memory in a way that he would appreciate. I hope that my blog and interactions with people affected by ALS will help and comfort them. I hope that I will find love again. I hope beyond measure that a cure will be found for this horrible disease.

In a way, hope is a gift, because it allows you to escape some harsh realities. I hope that all of my readers who are affected by ALS will find ways that inspire you to be hopeful and to see past the dark clouds to clear your mind, if only temporarily. There are reasons to be hopeful as we look at the research being done. There is also hope for comfort and the future as we look at the communities and forums of supportive and caring people that connect us because we share a deep bond of understanding and empathy.

Yes, ALS Awareness Month is ending. But, I hope that the determination never wanes to continue to raise awareness of ALS and the brave battles fought by people like my Ben.

I agree with Mrs. Potts. If you lose hope, you lose everything.

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

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

May 29, 2017

Lessons From My Dad On Memorial Day

abby_admin Disney, Uncategorized Marines, Memorial Day, USMC 1 Comment

Today is Memorial Day, and on this day I honor my dad, Jacob, who left this world in February 2014, and I thank all the men and women who have served this country. Of course, Memorial Day is to honor those who died in service, and mercifully, my dad did not. However, he often reflected on friends he lost during the Korean War, and this day was important to him, as it should be to all of us in this country.

My dad was a boy in Brooklyn during WW2 and loved to tell stories about the neighborhood. This was a picture he had of my grandfather and neighbors.

Brooklyn, sometime during WW2. My grandfather is the second from the right. Look at how proud and serious the men are!

When I look at it, I can hear my dad’s cute giggle as he told this story: There were concerns that we would be bombed and these gentlemen were the team that was tasked with extinguishing fires in the case of a bombing. My dad never stopped laughing as he pointed out the little bucket, which would need constant refilling, and the short hose that would not reach very far, clearly not the most effective method for dealing with the situation!

Daddy was such a proud Marine and a real patriot. It upset him that over the years he saw less and less flags flown around our neighborhood. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA Hospital out in Northport, Long Island he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed. Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes, which were so different from up here in the north.

Daddy at Mitchel Air Field on Long Island. He was worried that he wouldn’t get in or out of that plane!

The Cradle of Aviation Museum and events at Mitchel Field were favorite destinations for my dad. Since he was trained as a pilot, he loved to see the old planes! I went with him a few times and although I cannot say I shared his enthusiasm, I loved to see him so happy. And, I felt a lot of pride to see him meeting other veterans and sharing stories of their time in service. I proudly display in my apartment his model of the F7, the plane he flew, along with one of his USMC caps.

Daddy at the Cradle of Aviation Museum.

In more recent years, Daddy knew the young guys in his neighborhood who returned from deployment. Some of them had trouble getting back into life and my dad was concerned about them. I was always surprised by how much he knew about them, but he took the time to really talk to them. We read a lot about the effects of multiple and extended deployments. My dad understood it well and he felt for these “kids,” as he called them. I learned so much about compassion from my dad.

Daddy loved when people spotted him in his USMC cap and said, “thank you for your service.” He said it to any veterans that he met, too. I had the privilege of meeting many veterans when he was at the VA hospice in Northport. They were proud. They had many stories. And they were still fighting for their lives, in a different way. They were patriots and they inspired me.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Not a day goes by that I don’t think of and miss my dad. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. I’m glad he’s not witnessing the current events in this country. He’d be devastated, and he would also be reminding me that history does indeed repeat itself. I do wish I could call to discuss things with him, knowing that I would be holding the phone away from my ear because he would definitely be yelling!

Memorial Day is a special time to pay tribute to those who lost their lives in service to this country, to make things better for us. It saddens me to feel that our current administration does not really care about making things better for its citizens. But, maybe that’s why it’s even more important to remember those people who did care, to honor and support those people who do, and to reaffirm our love for this country and determination to honor our founding principles.

I thank all of the men and women of the military for their service and I remember with pride and great respect those who lost their lives in service to this country. And, of course, Semper fi, Daddy!

A Disney note:

Since I do make Disney connections in most of my posts, I would like to recommend Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War, a fascinating coffee table book published in 2014. Although it was published after my dad passed away, I bought the book because it reminded me of my dad and how much we embraced each other’s lives.

Walt Disney Treasures: On the Front Lines, is a 2-disc DVD set, released in 2003, which highlights Disney’s contribution to American military participation in World War II. This collection contains 32 short films used for training, propaganda and education. This set also contains the feature-length “Victory Through Air Power,” a propaganda film not released since its 1943 theatrical debut. My dad was amused at my ability to find this connection between my love for Disney and his love for WW2!

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