ALS

Two Years

Today marks two years since Ben left this world. I don’t know if it feels like a longer or shorter time. I guess both, depending on what moment I’m in. I’ve spent the past few days thinking about what to write and how I’m feeling. These are hard days filled with tears that flow easily. In my mind, it’s perfectly okay to have a few sad days. In a way, the tears are reminders that I was fortunate enough to have had a beautiful love that I miss so profoundly. But, it’s sad nonetheless.

A year ago, I posted this video, and I am posting it again because I love these memories of Ben and I love people to remember him alive and vibrant. He loved those photos, too. And, “In My Life” was his favorite Beatles song. It was played for him by a lovely guitarist named Todd on the day he left.

I know for sure that Ben has not left me. As Mrs. Frankenstein says, he has moved into a special place in my heart. I often feel him with me. I still talk to him. That does not make sense to everyone and that’s okay. It seems to me that the best thing that I can do is try to honor him in my actions. Sometimes I buy things, listen to music or watch movies because they let me get lost in thoughts of him, and in those moments I see him smiling. Sometimes this gives me comfort and at other times it is a painful reminder that he is not here. Sometimes I do need a good cry.

In facing this second anniversary, I took time to reflect on the past year and where I am compared to last year. Firsts are hard, and in that first year without him, every first occasion hurt in a very raw way. I labored through that first year, often just going through motions. Although I slowly ventured out and saw friends and participated in activities, I often returned home in tears because it took so much energy to act cheerful, and if I was at all enjoying myself, I felt guilty and overwhelmed, or almost confused by, the conflicting emotions. Blogging helped me find purpose and revisiting the Disney films I love so much helped me to focus, as I looked for messages and guidance and opportunities to gain insight into my experiences.

The fact was that although my dad died a year and a half before Ben, since I was so busy as Ben’s caregiver, I did not have the time to really grieve that loss. When I lost Ben and I no longer had caregiving responsibilities, I was able to truly grieve, but it was for the loss of both of them. It was also the loss of what had become my definition of myself as a caregiver.

In this second year, I still profoundly felt Ben’s absence, and yet, I have found that he is always present. I had to establish a new normal. I would say that this year was spent integrating my caregiving experiences and grief with rediscovering myself and redefining my life. I have made changes, particularly to my apartment, and I’ve documented those in this blog. The changes have not come easy, but Ben has been a part of the choices I’ve made. And, there are some things that I cannot let go, which was why I got so upset when his computer crashed and insisted on restoring his music library on his desktop computer with his speaker, and why I have continued to use his desk chair/wheelchair although it is not in great shape and I have new and beautiful Mickey Mouse chairs that he would love.

I admit that I dreaded this day and have been very emotional even thinking about this blog post. In general, although I have not forgotten the scary and devastating times, I prefer to summon the fun and loving ones. Unfortunately, summer, and these few days in particular, are spent reliving Ben’s last days, with hospital and hospice memories. There was a lot of love, but there was ultimately loss. I can’t seem to stop replaying the scenes in my mind. I’m trying to embrace the sadness as part of the process of grieving and as a quiet time to think about Ben and about us, and how much I miss him. I give myself permission to be emotional.

Last week, I did have a wonderful distraction, traveling to Chicago and visiting my dear college friend, Monica, whom I hadn’t seen in many years. She named one of her daughters Abby and I’d never met my adorable namesake, her adorable sister, Andi, or even her husband, Mike. Caregiving certainly kept me from going anywhere, but I’d lost touch with so many people I cared about. Catching up with Monica and meeting her family was a most special time and the happiest I’ve been in a long time. Spending time with good friends, being with kids, laughing and exploring are fun and treasured moments for me. Monica wanted to know about Ben, and it felt good and important to talk about him and our relationship in the good times and the bad times. Ben knew how important my friends were to me, and he would have loved Monica’s family and seeing me with them. He also would have enjoyed Chicago, and although it was sad that he was not actually there, I delighted in the Shedd Aquarium and the architecture, and especially The Bean, through his eyes. Yes, it brought some tears, but it also brought comfort. I can keep living and honor and carry Ben with me all the time.

The Bean sculpture in Millennium Park. It was probably the most sentimental place we visited, since Ben’s nickname was Mr. Bean.

Abby 2.0, my namesake, Monica and I taking our picture off of the reflection from The Bean!

Watching the historic solar eclipse with Andi and Monica. Ben, the science and documentary lover, would have relished this moment.

I learned a lot about myself over the past year. In Walt Disney Pictures’ Alice in Wonderland, Alice said, “I can’t go back to yesterday, because I was a different person then.” Caregiving and watching Ben battle ALS changed me. I felt and expressed love and compassion in such deep and immeasurable ways. I came to recognize a strength and bravery in myself that I still have trouble acknowledging, but I do know they are there. I found myself in caregiving and I want to support other caregivers whenever possible. I’m redefining my life with things that make me feel happy, satisfied and useful. I am not quite there, and I have my setbacks, but I am on my way, and I know that Ben is with me on my journey.

I don’t know what the next year will bring. I do know that I will take Ben with me in that special place in my heart.

I’m thinking of you today, my dear and silly Ben, as I do every day, free from the constraints of ALS and walking, talking, eating and playing your music. I love you.

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

Bambi’s Story Rings True After 75 Years!

From Bambi. (1942)
Music by Frank Churchill
Lyrics by Larry Morey
Photo: Walt Disney Pictures

Today marks the 75th anniversary of the release of Walt Disney Pictures Bambi. It is a special film to me, and has become even more special during my experiences in caregiving and grief.

One of my very first posts was a reflection on the lyrics to “Love Is a Song That Never Ends.” Click here for that post. I frequently refer to that song. Here is the song clip to accompany the lyrics:

Love is a Song that Never Ends
Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

Love guided us through even in the darkest and most trying times. The truth was that as much as we loved each other, when there was stress, we did not always show each other our best sides. We were scared, devastated and angry at what life threw at us. We were human. Now, nearly two years after Ben has left this world, I continue to sort through emotions, but the profound memories that I have – of the more carefree and healthy days as well as the most challenging caregiving and grief-filled days- constantly remind me that “love’s sweet music flows on.”

I wrote another post about the wonderful relationship between Bambi and Thumper.  The following most delightful scene took on a new meaning for me.

What I wrote in that post bears repeating:

Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was a child making an observation, albeit tactlessly, but his heart was in the right place. He was quite devoted to his new friend, the young prince Bambi.

Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.

Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.

Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them.

Bambi was so frightened, confused and sad to lose his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.

(f you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.)

Happy Anniversary, Bambi. And, thank you!

The Sound of Memories

Ben playing the drums at Walt Disney World’s Animal Kingdom. He loved listening to and making music.

 

In a post last week, I wrote, “I’m learning to be here in this world with the knowledge that Ben is a part of everything I do- as are my mom and dad- and they will never leave me. I am creating a new way of relating to them and they are here, without physically being here, evermore.” I’ve also written a lot about things that matter because they represent Ben and our memories. It has been so difficult to even consider parting with things that he loved, that he frequently used, or that were important to us. I’ve written about his table breaking and needing to be replaced. In that case, I never liked that table and until faced with how substantial a part of Ben’s life it was, I would not have imagined it to be something that mattered. Then, there is his shabby desk chair that became his makeshift wheelchair, filled with some lousy memories, but which is still the chair that I choose to sit in, despite my new and lovely Mickey Mouse chairs.  Yes, they are things, but they give me a sense of peace and security. I feel Ben when I am surrounded by these things, even though I also know that he is in my heart evermore.

A few days ago, Ben’s desktop computer crashed. This was something I dreaded because Ben’s computer was his lifeline. Almost every single day, I would get him dressed and wheel his chair out of the bedroom to his desk and computer. He used the computer all day–paid bills, watched movies, texted, surfed, and, most memorably, listened to music. I especially loved to arrive home and see him with his cute little smirk, singing along to our Disney soundtracks, recounting our visits to Walt Disney World. Ben’s face lit up when he listened to music and he loved to talk about music and orchestrations. Without wanting to resort to many clichés, music was essential to his being. During his last weeks, I came home from the hospital each night and turned on his computer just to listen to his playlists. It kept him close and present in our apartment, where I felt very alone as I grappled with the knowledge that he would never return home. I have continued to use his computer, almost exclusively to play his music. Since music was so important to him, it has kept his spirit vibrant to have his music fill the rooms.

The Dapper Dans were very cool! Ben always loved them.

When suddenly his computer would not boot, I went into a complete panic. I tried to remember things he taught me about working with computers, but nothing resolved the issue. I was completely devastated at the thought of losing Ben’s music and not being able to play it on his very own computer. The fact that this happened in August, with the quickly approaching second anniversary of his “leaving,” amplified my emotions. I remembered the many times that he set up a video and music for me as a surprise for my birthday, Valentine’s Day or our anniversary.  I remembered the song lyrics he gave me over the years to express his thoughts about our relationship and love. Even at Walt Disney World, he loved the barbershop quartet, the Dapper Dans, and the live bands that performed at the England Pavilion of Epcot, especially when they played The Beatles. Of course, I had some of the same music in my library and I could get any music, but I wanted things to be the way he had them, with the sounds of the iTunes playlists on his computer coming from his speaker. I tried to listen to music from my laptop and iPhone with a different speaker but it was too unsettling. These are the setbacks that bring back all the pain, just when I think I’m beginning to manage things pretty well.

In addition to the potential loss of his music library, I was also upset about possibly losing the inventory data for Pets en Voyage, my pet travel souvenir business, though I was pretty sure there were back-ups. Ben had painstakingly set up the inventory for me, and he was masterful with this kind of thing. He was so proud of what he had done, and of my business, and the data was invaluable not just for the information but for the memories it held of something that we worked on together and that gave us joy and hope. Although I had to put the business aside when caregiving responsibilities became overwhelming, planning and designing when I had a few minutes here and there, or even brainstorming in my head, kept my mind active and gave me some sort of focus for positive thoughts of the future, which generally seemed very bleak. Using Quickbooks to utilize the information has kept Ben a part of my activities and that has been such a comfort and inspiration to get back on track. I could not imagine losing that.

Caregiving,Grief,ALS,Memories

Ben’s birthday, 2013, seated at his table. He loved peanut butter M&Ms but shortly after that photo was taken, he had to stop eating them.

Ordinarily, Ben would have been able to troubleshoot and solve his own computer problems. He did teach me many things, but I was unequipped to deal with a hard drive failure. It felt like another loss. As much as I did not want to ask someone to take on tasks that were integral to who Ben was, I also wanted to preserve those things that were Ben. So, yesterday, I hired a computer tech consultant, Carlos. It felt very strange and sad, and yet, I think Ben would have enjoyed working with him. He was fantastic, and although the hard drive was corrupted, thankfully, he was able to recover the data. He made a couple of copies of Ben’s music library, and I will also upload it to the cloud. Although he suggested putting the music library on one of my laptops, I asked him to set up a desktop computer that Ben had purchased but had never used.  Carlos understood that although I did have to change the computer itself, emotionally, I needed it to still be Ben’s, with the identical files and structure, and the same monitor and speaker. Thanks to Carlos, Ben’s music will still play as it always did, with the sounds still coming from his speaker. The first music I played on the restored system was The Beatles’ “Love Songs” album, as it should be.

As I have written, I have been ready to make some changes in my apartment, but definitely not this one. I’ve written about what we know from Bambi, that “Love is a Song That Never Ends,” and, thankfully, it will sound just right, as I continue to sit in his chair, peruse his playlists, smile as I remember his love of music and know that I have honored him and our life here.

Here is a tiny video that I took during our last trip to Walt Disney World, with Ben watching the live band at Epcot’s England Pavilion. He was so happy to listen to live bands and I wanted to capture the memory and he didn’t want me to miss the music!

With Me Evermore

Listen to the song while you read the post! Performed by Josh Groban, from the Beauty and the Beast (2017) soundtrack.

 

It’s been a year since I launched this blog. I’d spent what feels like a lifetime collecting Disney inspirations and insights that helped me sort through the many emotions involved in caregiving and grief. I have learned a lot as I have written blog posts and corresponded with caregivers and those with ALS and other illnesses. I am grateful and humbled to have made new good friends through bad circumstance. I am also coming to a more peaceful understanding that the people I’ve lost are and will be with me and part of everything I do and everything I am, evermore.

My very first post began with one of my very first quotes, “You are braver than you believe, stronger than you seem, and smarter than you think,” which Christopher Robin told his friend Winnie the Pooh. I continue to remind myself of this and often to be surprised at just how true it is in caregiving, grief, and life! Wise little boy, and not so silly old bear!

I do reflect on my experience in grief, and on the judgments I’ve felt from others, and have made of myself. Last week, I wrote about how Ben was not defined by what ALS had done to his body, that he was still Ben inside, and he needed, and deserved, to be related to as he always was. As I wrote “What Aladdin Knew About Appearances,” I thought about how grief is not always displayed on the outside.  I have sometimes altered my outside to cover what is going on inside, so that people who care about me will feel relief that I am doing well and not find me to be a drag.  I will admit that sometimes acting cheerful on the outside can help cheer me up on the inside. Unfortunately, that does not always work, and sometimes it has backfired, leaving me drained and even sadder. I will always be grateful for waterproof mascara!

Even before I was ever in grief myself, I heard people comment that a particular period of time had passed, and someone should have “moved on.” If you’ve read this blog, you know I don’t like that phrase because it feels like it is saying that I have left my loved one behind. Maybe it’s just semantics, but that’s the way it resonates with me. I never understood the concept of a designated amount of time for grief. Did people think I was over the loss of my dad too soon, since I had returned to my caregiving routines quickly? Or, since I didn’t get to grieve my dad’s loss, was it two for one grief or did I get an extension on my time to grieve after Ben died? Ridiculous, indeed!

After I lost Ben, many people rushed to tell me that I had my life back so I should be happy and make this time about me. Happy? Really? Telling me I have my life back was not helpful. Yes, I did understand that they meant I had more freedom. Note to self: I have to be less understanding of people who tell me what and how to feel rather than asking me how I’m feeling. The truth was that after caregiving for my dad and then Ben for more than seven years, I did not know what to do with this life and freedom that had been returned to me. And, there were many times that I did not want to know. I was simply having a hard time without them. But, it was easier not to argue the point, and, I either kept my distance from these people or superficially put on a happy face. Those people never really saw what was going on inside my head. I don’t even think they would have understood, but the potential frustration was not worth it to me.

My friends know that I cry easily, so to cry in front of them was nothing new. But, I tried to enjoy myself with them, particularly shortly after Ben left. They felt relieved to see me smiling but they were very sympathetic, too. However, I was very conscious of and uncomfortable with my smiling and laughter because they did not match what I was feeling inside. For at least a year, and still at times, I arrived home in a puddle of tears. It is very stressful to fight your emotions. But, I had to test the waters and slowly ease myself into the land of the living. Fortunately, I did have some wonderful people supporting me.

From the time that Ben “left” (his word), I have also judged myself in my grief. Am I doing enough? Am I getting out? Am I crying too much? Dwelling on the loss? Am I OK? What is  OK? When I joined a support group and said that I’d cleaned out our storage space after a few months, and another woman said that she had not cleared out a thing, I immediately felt guilty. I thought about how my dad never removed my mom’s bathrobe from their bathroom- time stood still. What’s right? I have come to believe that everything and anything can be “right” if it feels that way, and it might feel that way in one moment, but wrong in another- that’s the hard part.

As I look back, I think that it was the man I hired to repaint and carpet my apartment who genuinely understood what I was grappling with as I tried to reclaim my life. He spoke little English, but since I speak Spanish, we communicated pretty easily. But, he seemed to understand my struggle as I explained things about the apartment and what I was changing. He saw the conflict between excitement about the changes and painful memories of ALS, caregiving and loss. He did not know me, he did not judge me, but he supported me as we respectfully changed things together.

At each instance where I have done something for myself, I have been so touched by the support I have received. People want me to be doing better. I want me to be doing better! My visit to London after many years, my theatergoing, my increased socializing, and now, my dating, has made my friends and family so very pleased for me. I have to admit that I am proud of myself. But, sometimes I put that information out there almost to convince myself that I’m okay. This is a strange summer, in which I’m back in the land of the living while in my head and heart I am reliving all of my memories of my last summer with Ben. My emotions are “Inside Out” now, and I wake up every single morning thinking about my summer in the hospital with Ben. I put my posts on Facebook with all of the Broadway and ballet I’m seeing, and the lovely times with friends. I feel unsteady because my moods fluctuate quickly from happily engaged to distraught and in tears. But, I’m still living, and more and more often without guilt. Some people quickly move beyond any mention of Ben and my dad to remind me that those days are over. Well, the days are over, but the emotions are not and the memories live on. It’s a juggling act. The sadness does not bowl me over as frequently, though on the anniversary of the day Ben went into the emergency room, I stayed in bed crying and watching “Monsters, Inc” with our Sully dolls. And, no matter what anyone says, I think it’s okay.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Sully, Monster Inc

2012-Ben was so happy to meet his favorite buddy, Sully, at Hollywood Studios.

My experience with grief has shifted. From barely being able to grieve the loss of my dad to losing Ben and feeling like I was grieving the loss of both of them, what I have learned about grief is that my emotions are my own. I don’t have to explain or defend them. I do not have to listen to judgments from anyone, and I need not judge myself either. I’m doing okay. Sometimes, smiling and engaging in life does help me smile more on the inside, but sometimes it doesn’t. That’s the lousy side of grief- it’s unpredictable. These days, I am not as vulnerable to the judgments of others. People may have a timetable for grief, but my own timetable is all that matters to me.

In the past nearly two years, some people have commented that they are amazed at how much I handled when caring for my dad and Ben at the same time and losing them within a short time of each other. Some people have commented that they think it’s great that I have reached out to offer support to others who are dealing with ALS as patients and/or caregivers. Some people feel like I’m caught in the past. Some people feel that I can’t really begin dating because Ben is still so much a part of my life. I know that the judgments are usually grounded in a desire to see me thrive. I want people who care about me to feel like I’m doing better. And, I am, but it has to be on my terms and in my way. It’s not easy for me to say that, but maybe reflecting on my caregiving experiences has revealed to me my resilience and given me a bit more confidence.

My weekend in West Hampton was filled with less guilt for a good time (click here for that post). The Fab Faux concert was filled with much more smiling than sadness. In the lyrics to “Evermore,” Beast was talking about Belle, and I feel the same way about Ben, and the loved ones I’ve lost. The grief process has led me to a place where having them close to my heart in so many memories is always a comfort, even if it comes with tears and missing them. I’m learning to be here in this world with the knowledge that Ben is a part of everything I do- as are my mom and dad- and they will never leave me. I am creating a new way of relating to them and they are here, without physically being here, evermore.

If you are in grief and you feel that you need additional help, join a support group, seek therapy, or contact an association working with you or your caree to see if social work services are available to you. If you are dealing with someone in grief, ask them how they are feeling, let them have their emotions, and let them know that they also have your support.

Early in our relationship, Ben gave me this frame with his own picture inside. It’s a good memory that still makes me laugh.

What Aladdin Knew About Appearances

This time of year has become a difficult and confusing one and I am just learning to roll with my emotions rather than fight them. As I’ve written, as a teacher, summer is a delight. Unfortunately, summer comes with painful memories of much time at doctors and in the emergency room with my dad. And, in 2015, it was the time that Ben declined drastically, spent the summer in the hospital, and ultimately, passed away just before I began a new school year. It stands to reason that at this time of year I find myself dwelling on and reliving the many things that happened during Ben’s hospital stay. I think of the assumptions people made of Ben when they saw him in a scooter or electric wheelchair, or spoke with him and maybe had difficulty understanding him. I have learned that, as Aladdin said, the outside tells one story, but what is going on inside our hearts and minds that really counts.

ALS slowly stripped away Ben’s ability to move his limbs, chew and swallow, and it also caused his speech to be impaired. He was bravely determined to maintain as “normal” a routine as he could, despite those struggles. Of course, he did not like what was happening to him, and because ALS does not affect cognitive skills, he was well aware of what was going on. ALS was part of every single thing we did, every single day. But, he was more than the ALS that constrained him on the outside. Inside, he was still Ben.

With ALS came Ben’s deep feelings of alienation. Ben noticed that people changed with regard to their interactions with him. As it became harder to understand him, some people stopped trying. Speaking by phone was difficult because it was more difficult to understand him and because he could not always answer the phone quickly, so he would have to return calls. Some people sent texts because Ben could access those on his computer and could use a virtual keyboard to reply. I was always happy to come home and find him corresponding with someone because it kept him engaged in the world and let him know that people thought of him. But, in large part, he was alienated. His abilities had become limited, but he had not. And, he was hurt.

When we were outside and he was in his electric scooter, he chuckled because he said that his speech impairment seemed to lead people to believe that he was mentally challenged. I was glad that he usually found humor when people spoke to him as if they were speaking to a child. But, it did frustrate him when, upon hearing his speech impairment, people ignored him and only addressed me. I took the lead in these situations, turning to him and directing questions to him. Some people realized quickly that he could communicate, but others clearly lacked the patience. As his advocate who loved him, I lacked patience with those people.

When Ben went to the hospital, he was given a Bipap mask and put on a ventilator. This was a whole different kind of problem in understanding him. It was the first time that I had to try to read his lips, and it was challenging because the mask obscured his mouth. Aside from the fear of being in the emergency room and not knowing what was going to happen, it was extremely frustrating for him not to be understood. It was frustrating for me not to be able to understand him.

Once admitted into the hospital, we learned a way to spell out each word. Imagine spelling out each word that you say: For each word, letter by letter, first, I asked if it was a vowel. Then, I asked him if the letter was in the first half of the alphabet or the second. Once determined, I proceeded to spell out the alphabet until he nodded that I’d hit the right letter. Sometimes I could figure out the word quickly without all of the spelling. Not often enough. I wrote out the words and sentences. It was taxing. There were times that he shook his head rather than go through the process. When you are not expressing yourself, you begin to lose yourself.

A hospital is a busy place. Nurses, residents, doctors, medical students and a lot of other staff members filed in and out of the room. If Ben’s mask shifted, the alarm rang, which was stressful and scary, though easily remedied. Sometimes, people tried to talk to Ben. Most of the time, they talked to me instead, and they often did that right in front of him. Ben could not even move his hands or arms to signal that he had something to say. This was one of the reasons why, although people told me that I was spending too much time in the hospital, I felt compelled to be there. Also, Ben could not call for help. People did not always take the time to ask him questions and simply checked the numbers on the machines. On a certain level, it was understandable that staff was busy and as long as he was safe, they were doing their jobs and Ben was as stable as he could be in his condition.

What people did not realize is that what they saw on the outside was contrary to was going on inside Ben’s mind. Ben had a lot of opinions, he understood what was being said and asked, and, most of all, he mattered and he needed to know that. I found that a critical role that I played was as a facilitator of discussions between Ben and hospital staff, as well as visitors.

When people addressed me without acknowledging Ben, I turned to him and immediately engaged him in the conversation. I showed people how we spelled out words. I did not let people put words in his mouth. I also asked a lot of yes/no questions, which made it easier for him to respond. On the outside, Ben may not have appeared to be a vibrant person, but he was. Even I needed to remind myself of that when I got so caught up in caregiving responsibilities that I didn’t pay attention to who we were as a couple. I showed him love by holding hands, looking into his eyes and letting him know that even if we were struggling to communicate, I was there for him.

If you are in a position where you are visiting or dealing with someone who has difficulty communicating, please do not ignore that person. Acknowledge his or her presence. Show the person that they matter and are more than their medical issues. If there is a caregiver to help, still involve the person in your discussion. Express kindness and compassion and really look at them to see deep inside the person you truly know. Don’t assume that what you see on the outside is what is on inside.

ALS, Disney, Aladdin,Genie,Caregiving,Grief

If I’d known when I met Genie that Ben would get ALS, I would have asked him to grant the wish of a cure.