ALS

What “The Fox and the Hound” Taught Me About Grief

On the heels of January 13 being the anniversary of my mom leaving this earth, February was filled with anniversaries- my dad’s birthday and the day he died, Ben’s birthday, the date of my grandma’s death, and two and a half years since Ben died. I didn’t mark the 6-month date in a blog post, but I was keenly aware of it. March began with my Grandma’s birthday. All of these events made all the more resonant Widow Tweed’s words to Tod in The Fox and the Hound:  “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”

Each year, when I am hit with this block of dates, I relive all over again the losses and how they happened- the hospitals, the VA, the hospices, the crises, the goodbyes, the sadness and fear and even anger. I lament the many ways that life changed with each of these losses, and I think about how I have lost the family that was my bedrock. At a time when I have begun to feel more joy and comfort in memories, and I am gaining perspective on my relationships and my experience with grief, this block of time definitely feels like a setback.

I think back to when my mom died of a sudden massive heart attack, and it completely uprooted my world. My mom and I spoke many times each day, spent so much time together, and when she died I simply did not know how I would go on. For quite some time, every morning I awoke, sat on the sofa trying to decide how I would spend each day, until evening fell, and I could just get back into bed. When I did go outside, something would invariably remind me of my mom and I would break into tears. It was unbearable. Family events without my mom were traumatic. During that time, I was completing my Master’s Degree and I was hired to work with children in a hospital. I relished that time because I had to put my own grief aside for a few hours to focus on the needs of the children, which was rewarding and purposeful. Other than that, the only thing present for me was her absence.

With each subsequent loss, I went through a similar process, though, sadly, I knew more of what to expect.  With Ben, the levels of grief were particularly layered and they began during his battle with ALS- loss of the life as we knew it, shifts in our relationship, and, ultimately, supporting his decision to go off life support and preparing to be there for and with him as he left this world on his terms. Experience did not ease the pain of my losses by any means, but maybe it helped me to understand it and adjust more quickly to coexisting with the pain of grief.

Although I did question it when I heard it, I now believe that Cinderella’s Fairy Godmother was right that “Time passed and pain turned to memory” (live action Disney Cinderella, 2015. Click here for that post). I do remember those awful days of grief. At this time of year, in particular, but also at other times, anticipated or unexpected, I still get hit by waves of grief, sadness and missing everyone. But, I also have vivid, beautiful memories of these beloved people. I look at myself and know that they have all helped to shape the person I am today.  The memories are loving, and also truthful, and they have offered me a better understanding of myself and those relationships. They have led me to want to offer comfort and support to other caregivers and people in grief and to want to find and keep love in my life.

I’ve come to realize that although I said goodbye, our relationships did not end. Now, I carry our memories in my heart, where they will always be to guide and inspire me and to surround me with love. It is not the same as having them here, but it is a lot.

By the way, The Fox and the Hound is a truly touching story that I highly recommend. It has sweet messages about friendship, loyalty and acceptance.

To My Mickey On His Birthday

Today, February 21, is Ben’s birthday. I woke up feeling so down that I didn’t want to get out of bed. This is the third birthday without him, so I asked myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.

I miss Ben and I think that’s okay. I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him.

In an effort to continue to make a fuss over Ben, I made a plan for today to honor him and our relationship. Making a plan was a way to prepare for the day, too. Since next week is the Jewish holiday, Purim, I decided to bake humentashen, the triangle-shaped, fruit-filled cookies. I knew Ben would like that. He loved them and was very good at shaping the cookies! Ben actually enjoyed a lot of Jewish holidays and traditions- often more than I did! He got a kick out of helping me, particularly because I used to tell him that he was better at it than my mom, who could not make that shape no matter how hard she tried. It always made me laugh to see my big, Puerto Rican man delicately making the humentashen! Grandma would have been proud of him!

Ben and Grandma would be proud of this batch of humentashen.

I am also in the midst of a Disney movie marathon of Ben’s favorites- Monsters, Inc., Mulan, Toy Story (1,2,3) and The Incredibles. It’s a quiet day filled with lots of memories.

I also looked at the video that I made last year on his birthday, which I’ve placed here once again. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love was always there, so I embrace all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles.

I want anyone reading this to know that, at least in my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress! Although I made this plan for today, I didn’t know if it would be right for me until I was in the moment. It began shakily, but I did get myself out of bed to accomplish my goals. Thankfully, though having a “Ben day” alone with my memories and baking did not make me happy, it still felt right, and that gave me a feeling of contentment. And, Ben (and Grandma) would be thrilled that the humentashen came out very well!

As I wrote last year, there is no candle on a cake now, but always wishes that he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

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.

When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say

Happy Birthday, My Mickey!

With much love and pixie dust,

Your Minnie

2011- The first time we went to Fantasmic!

It’s A Small World After All

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!

For musical accompaniment while you read this post, click below to hear the song!

It’s a Small World
Lyrics and music by Richard M. and Robert B. Sherman

It’s a world of laughter,
A world of tears.
It’s a world of hopes,
And a world of fears.
There’s so much that we share,
That it’s time we’re aware,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world.

There is just one moon,
And one golden sun.
And a smile means,
Friendship to every one.
Though the mountains divide,
And the oceans are wide,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world

It’s a Small World is one of my favorite songs, and the ring-tone and ring-back tone on my phone, either to the delight or dismay of people who call me. It is also my favorite attraction at Walt Disney World, and was one of Ben’s, too, and he loved that after his diagnosis, he could easily ride right onto the boat with his scooter and electric wheelchair. I do not like to get political in this blog, but I can’t help but think about how timely this song is and wish that we had more politicians who promoted this kind of unity. But, this is a blog about caregiving.  As a former caregiver, and now a participant in support groups for caregivers and family members of people with ALS, I see so much judgment and the hurt it causes- from caregivers, carees, family, friends and others. Although we all wish we could dismiss the opinions of others, nobody likes to feel judged, particularly when we are already vulnerable and those judgments make us feel inept. It’s so important to remember, and sometimes to look for, the things that we share, even if we take action in different ways. Also, while we debate the efforts that we make, a simple smile is a universal act of kindness that can make a tremendous difference in our lives.

Yesterday, I was reminded of how important it is to have compassion and to be considerate, rather than judgmental, of what people are experiencing. We never know exactly what is going on in someone else’s life or how much we might have in common with a stranger.

I was waiting outside a movie theater to meet a friend, when a woman came up to me to ask for directions. I directed her back down to where she was walking from and she got very upset, saying that she had just been told to come up the block from that direction. I pointed to the street signs- Manhattan is a grid in most parts-  and showed her the precise street she was looking for, which was literally one block away. She showed me the exact address she needed to find, and I confirmed my directions and told her what the cross streets would be, hoping to comfort her by explaining that I lived just below it in the same range of numbers. She was inconsolable. She told me that she was going to her friend’s apartment and was trying to call her, but her friend would only text and would not answer her phone.  The woman appeared to be a New Yorker, but I could see that for whatever reason, she was distraught and seemed almost disoriented. I offered to walk her to the block and that seemed to appease her. When we got to the corner, she got upset again, saying that it was the block that she came from. She tried to call her friend again and got no answer. I didn’t understand why she didn’t text her friend but did not ask questions. Since she was so upset, I offered to walk up the block and see if I could spot the building. I quickly found the building, walked back to the corner where she waited for me, and escorted her to the building.

As we walked towards the building, she apologized for walking so slowly, saying that she had a lot of health issues. I smiled and said it was no problem and told her that my husband had ALS and I walked slowly with her, remembering how I made those accommodations for Ben, then walked beside his scooter, then his electric wheelchair, sometimes having to help him steer that vehicle. She confided that she had Parkinson’s and I applauded how well she was managing despite her worry. We smiled and wished each other a good day and she calmly went into the building.

I walked back to the theater thinking about how at first glance, she just seemed unnecessarily frantic and somewhat unreasonable. Once I understood the context of her panic, I saw that she was probably terribly concerned about walking back and forth, and maybe uncomfortable, tired, and unsteady. But, it really didn’t matter if I understood. What mattered is that I could easily lend a hand and relieve a stranger’s stress.  I then wondered how her friend could be so thoughtless to insist on her texting when, with Parkinson’s, she may have found that a difficult task, especially in the severely cold weather. It seemed at the very least, terribly inconsiderate. Perhaps her friend knew little about her illness. In this case, it would be appropriate, and responsible, to ask how best to accommodate someone. The trick is to do it without making the person feel like a burden or to call great attention to their needs. In the case of someone who is reluctant, or too proud, to ask for or accept help, it can be useful to arrange to be  conveniently nearby.

I have written quite a bit, even recently, about judgments that people made about Ben based on his speech or being in a scooter as opposed to an electric wheelchair (he did eventually need one). As caregivers, we know our carees, and, even at that, sometimes we have to listen to them even though we have our own opinions of how to handle various situations. I was fortunate that Ben never lost his ability to communicate, even though it became more difficult to understand him. He knew himself and his body very well. That’s not always the case, and when it isn’t there is frustration on the part of everyone involved. But, a smile and acknowledgment that we all matter can do wonders to help relieve stress and foster communication and cooperation.

I believe that we know that Eeyore is right that, “A little consideration, a little thought for others, makes all the difference.” Ben and my dad always appreciated expressions of consideration and kindness. Likewise, it meant the world to me to know that they appreciated my efforts on their behalf. Sometimes it could only be expressed with a smile and a squeeze of the hand, but that spoke volumes, especially after bouts of impatience and disagreement and, believe me, those did happen!

We all have our routines, our world views, our opinions. We run across so many strangers in our lives. We have no idea what’s going on in their lives. Even when we do, we are not part of the dynamics of other people’s relationships. People who knew me thought that I should handle things differently and got frustrated and concerned about what they thought was my inaction but was sometimes an emotional paralysis. I’m sure that there were occasions when I was frantic and people thought I was unnecessarily high strung. Strangers didn’t know that I was the caregiver of a man with ALS at the same time that I was helping my dad who had cancer. They did not know that I was in tears as I rushed past them because I was scrambling to make a train to avert a crisis. Undoubtedly, some of these strangers had their own stressful situations. In those moments when there is the inclination to judge and offer an uninformed opinion, or lose patience, please remember what Eeyore said, and also that “There’s so much that we share that it’s time we’re aware, it’s a small world after all.”

To all who now cannot get that tune out of their heads, I apologize- well, sort of. After all, it is my favorite song! These are a couple of favorite pictures from the attraction.

Love these girls!

 

We never passed these girls without shouting “ooo la la” along with them!

 

Some of you may feel like this right now. The sign was on the attraction one year but we never saw it again.

 

July 2014- we never really mastered “the selfie.”

 

How Iago Has Helped Me Through Difficult Times in Caregiving and Grief

ALS,Caregiving,Grief,Iago,Aladdin

The beginning of a new year should be a positive time of looking ahead, setting goals, and optimism. For me, I kind of dread January and February because of the anniversaries- my mom died in January, my dad’s birthday and death occurred two days apart in February, and Ben’s birthday was in February. All I can do is sigh. I guess the melancholy that looms conjures for me of the uglier and sadder caregiving memories, and strengthens the waves of grief.

Last year, I was thrown when Ben’s table collapsed during the holidays and I had to throw it out (click here to read about the things that mattered). I still miss that ugly table because it held so many beautiful memories of Ben.  Then, I was unnerved when I added new ornaments from London to the tree because everything about the tree represented Ben and me. This year, I was prepared for the conflicting emotions as I decorated the tree. I still put the Ben’s favorite ornaments exactly where he liked them, so he could see them from his chair at his table.

When I plugged in the pre-lit tree I saw that the lights didn’t work in several places. Another heartbreak. Ben got that sparkly pink Christmas tree for me when having a real one became too complicated given our space. I admit that I get sentimentally attached to a lot of things, as evidenced by my home filled with mementos from loved ones and special times. Therefore, it is hard for me to part with things that Ben gave me, because represent parts of our relationship. I kept the tree up for the holiday season, feeling that the lack of brightness reflected my mood, and I procrastinated about taking it down. I knew that dismantling the tree meant throwing it away.

Yesterday was the day I had to take the tree out to the curb. As I looked at it, the sadness I felt was not just about letting go of the tree, but of how small and insignificant the tree looked on the tree. Nobody passing this discarded tree would know what that tree represented, how it brought joy during holidays that were not joyful. They would not know that it was the last tree Ben ever saw and how it was decorated according to his wishes and delights.

Although I now feel particularly vulnerable, and I was thrown by the loss of our silly, sparkly pink tree, I also realize that Aladdin’s Iago was right when he said, “You’ll be surprised the things you can live through.” That’s a good life lesson and an important reminder. Although losing the tree doesn’t come close to the tragic and frightening events that occurred as I watched my dad and Ben succumb to their illnesses, it conjured many of those bad memories.  The tree was yet another symbolic loss that amplified that loneliness and makes me wonder when and if all of this will end. I do know that somehow, I keep going.

Throughout my life, I have generally thought of myself as a crybaby, very squeamish, and not physically or emotionally strong. I had a hard time comprehending why people told me that I was brave, when I was not the one facing death, though I have come to understand what was perceived as my bravery. I will always believe that caregiving was the most important and loving thing I have ever done, but it was also intensely difficult, devastating and exhausting. This is probably why I relate to Christopher Robin’s quote, “You are braver than you believe, stronger than you feel and smarter than you think.”

During caregiving for my dad and Ben and then, in grief, despite the times that I felt so close breaking down and so incapable of meeting the challenges, I must remind myself that lived through it. In fact, I did more than live through it because Ben and my dad knew that I did my best for them, advocating, caring for and loving them.  And, although there are still unexpected triggers that cause me to stumble in grief, I know that Iago was right and I’ll continue to get through the waves of sadness and floundering. After all, I don’t want the worst times in my experiences to be what define me or the deeply loving relationships I had with these people whom I love and miss so much. It’s taken time, but I have come to realize that integral to getting through these times is my finding ways to honor my Ben and my mom and dad every day- even through my blogging- and keeping them in my hearts, letting them guide me as I reshape my life, embrace the present, and look to the future.

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Our last family Christmas/Chanukah, 2014 with our sparkly pink tree. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

ALS,grief,Disney,Christmas

Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.

Pooh and Piglet, Ben and Abby, Best Friends, Best Memories

Walt Disney World, 2012

Yesterday, I received an email from a friend who was doing a crossword puzzle. He wanted to know who was Pooh’s 6-letter friend. I wrote back that it could be Piglet, Tigger or Eeyore, but Piglet was Pooh’s best friend.  Sure enough, the correct response was Piglet. I didn’t expect the day to be filled with memories that were conjured by that simple email.

When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and he could calm me down with his great hugs. He was also a big kid at heart, and he indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

Disney Store,Winnie the Pooh,Piglet

Piglet and his Best Friend Pooh!
A very special figurine with very sweet memories.

Because of that incident, Pooh and his friends had a particularly special place in our hearts. At Walt Disney World, we always ate at the Crystal Palace buffet, so we could see them. After Ben’s ALS had progressed a bit, I got him settled at our table and then got a plate of food for him. There was one time that Pooh came by our table when I was at the buffet. When I returned, Ben told me that I’d missed Pooh but that he told him that I was going to be disappointed that I missed him. Ben was concerned that Pooh might not have understood him, since his speech was impaired and the costume would make it even harder to hear him (Yes, we did know it was really an actor in a costume, but when we were at Walt Disney World, we completely dove into the fantasy)  A few moments later, I looked up and Pooh was literally running towards our table. He pointed to Ben and then tapped his own forehead, letting me know that he remembered to come back (I speak fluent Disney). Pooh gave me a big hug and we posed for photos. Ben was absolutely thrilled. In fact, making that happen for me was monumental for Ben because, at this point, Ben needed a lot of assistance, and that was difficult for him on a lot of levels: It was not easy for him to be so vulnerable, he was self-conscious, he liked to take care of me and he felt like he could not do that anymore, and there was always a looming worry of what was going to happen next. In this moment, Ben was the hero- he brought Pooh to me! This remains a most treasured memory.

Walt Disney World, 2012

The memories are important. They are everywhere. People might find it odd that so much that I have and do is tied to Ben, and that I continue to regularly share these memories and talk about him. Am I dwelling in the past? Am I keeping myself in a relationship that is no longer here?

There are times when I find that I do want to retreat into the comfort of my memories with Ben. There is also a feeling that I want and need to keep Ben in people’s hearts. I still have a relationship with Ben, though, of course, it is changed. He now resides in my heart and guides me. The fact that we had a perfectly imperfect relationship makes me want to find love again and to create new special memories, though it is also hard to imagine.

Walt Disney World, 2002
The pre-ALS days.

Grief is predictably unpredictable, and I do measure my reactions to these kinds of occurrences.  Am I doing better? Am I handling the grief differently? Better? It’s a day by day co-existence. Yesterday, I found that although the email from my friend made me stumble at first because I immediately thought about how much I miss Ben, I found myself smiling throughout the day as our sweet Pooh memories popped into my head. That was a good feeling. I know and am comforted that Ben is still with me, and that our time together- the good times and the ALS times- has helped to shape me. I struggle with the reminders that our time was cut short and there will be no new memories with Ben. I do feel like I am becoming more accepting of and comforted by knowing that he is with me in my heart, so he will be present in my future.

Walt Disney World, 2011