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!
“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.
2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.
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!
I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, up until he left this world. I remain in awe of his bravery and strength.
My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and I did enjoy hearing from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, “Mrs. Miniver.” I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!
Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but “every mile was worth my while.” I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”
Managing grief has been another Herculean task. The ups and downs have been hard, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize again and to enjoy doing things I love, like going to the theater. I even added to my routine with strolls through Central Park, where I do see signs of Ben from time to time. I have changed things in my apartment, though Ben is very present here in photographs, things of his that give me comfort, and things of ours that bring good memories.
When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years.
I have blogged about my memories, and coping with my present, but the future is still daunting. I recently began entertaining the notion of dating again, tiptoeing into the online dating realm (not loving it!). My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. I like to think the best in people, so to have to have my guard up is out of my comfort zone. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that it will be worth my while to go the distance and be strong to find where I belong. I’ll keep you posted…
Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. And, the truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. Living in a house with Grandma, I feel like I grew up with two mothers, and I would like to honor them today.
My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.
My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We loved each other unconditionally and had so much fun. Frankly, I could not imagine living after she died.
Grandma and I were also very close. From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. The best shopping I ever did was in her closets and drawers. More than once, sales people at stores would approach me and ask, “are you the person who called your grandmother for fashion advice?” They found that admirable. If they knew her, they would have called her, too! When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life. But, we had a special bond and an unconditional love for each other.
Grandma doing my hair. She crocheted my dress- so talented! I get my creative streak from her.
Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a tremendous appreciation of and compassion for elderly people that I have to this day.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.
Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep. My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.
When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as Grandma, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.
I realize now that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after Grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with Grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. And, as in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.
Grandma and I around 1990
When Grandma was ill, I helped with her caregiving, and although I was not her primary caregiver, I was the one she usually relied on for comfort. At the same time, she wanted to protect me from the fact that she was dying.
As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Every time I bake I feel Grandma with me, and she is a part of all of my creative and artistic endeavors, as well as my fashion choices.
Making humentashen is a tradition that started a long time ago!
There is not a day that I don’t think of my mom and Grandma. I am proud to honor them on Mother’s Day, though in truth, I celebrate and treasure them always.