Caregiver

Happy 52nd Anniversary to The Jungle Book- With Thanks for It’s Lessons on Caregiving and Fighting the Shere Khans

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

Today marks the 52nd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

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

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

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

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

 

Grief And The Things That Turn Me “Inside Out”

Sometimes, the hardest times are the ones when I remember the joy at the same time that I feel the sharp devastation and anger about loss. These are the times that turn me Inside Out. That’s what I have been experiencing this weekend. It’s exhausting.

Tomorrow will mark four years since Ben left this world. It’s almost as if I gear up all summer for this day. For the most part, I am proud, relieved and joyful that this has been a very good summer. In fact, it’s been the best I have had since he left. I was better able to balance being myself- my new self- with keeping Ben in my heart wherever I went. I know and accept that I can’t keep sadness in a corner, as Joy tried to do. The sadness and the joy were all part of our relationship, so they have to remain in my memory to keep them real.

I’ve noted it before, but there are triggers of setbacks. I don’t usually get angry at myself for crying. Anyone who knows me knows that I often default to crying. In Inside Out, Sadness says “Crying helps me slow down and obsess over the weight of life’s problems.”

This has been a weekend of tears and of letting myself feel the weight of grief, loneliness, alone-ness, anger, frustration, compassion and empathy. I spend a lot of time assessing myself and how well I am navigating my life. Maybe I need this time to slow down and let myself miss Ben and lament what our life could have been and what ALS took from us and is continuing to take from so many other individuals and families.

On Friday, I traveled up to the Berkshires to spend the day wandering around the town of Stockbridge prior to volunteer work on Saturday. I arranged to stay at the luxurious Red Lion Inn. It had been many years since I sat on the famous porch enjoying a glass of wine and I looked forward to being there. I entered my room and immediately thought of how Ben would have loved it. We loved to go to the quaint towns of Vermont, and the Inn and this room were reminiscent of our visits there. As I walked through the little library that led to the elevator, I thought of how Ben would have looked at the wall of books and commented that I would love a room like that, and I would have to agree. I took pictures as I know he would have done. In my room and throughout the building there are many beautiful antique desks. My aunt Ellie loved those desks, and she was the first person to take me to the Berkshires, so thoughts of her were also in my mind. She is the remaining relative to whom I was the closest, but with her Alzheimers disease, although I believe that I remain somewhere in her mind, in most ways, the aunt I knew and loved is gone.

The first shop I visited was Williams & Sons Country Store. Ben and I loved to go to country stores. I love the look and feel of them. We always found fun things at the Vermont Country Store, where we spent hours! It didn’t feel the same being without Ben. Nothing does, of course, but traveling to a place so much like places we would travel to felt so very sad. I wanted him to see the retro Cracker Jacks boxes, wanted to buy them just because he would have loved them. I did buy a little tiny turtle with a bobbing head. It reminded me of him and I knew he would have loved it, too.

I continued my stroll and spoke to lovely shopkeepers. I treated myself to some new clothing and fun jewelry. Retail therapy is always helpful to me, but I could not really shake that feeling of not belonging. I did have a glass of wine on the porch, but I felt like the only person by myself. I don’t always feel that way. Throughout my life I have traveled by myself, so I am often comfortable on my own. I think it was especially hard because Ben would have enjoyed it so much and it would have been a perfect getaway for us.

I was happy to meet Norman, the feline ambassador of the Red Lion Inn. He was very tolerant of my need to follow and pet him. I could hear Ben reminding me that I was like Boo in Monsters, Inc., who was always following Sully calling, “Kitty, kitty!” There was not a thing I did that didn’t make me think of and miss Ben. I think my last straw with myself was going to the pub where there was live music. I thought I would enjoy it, but it was something I really couldn’t do without Ben, so I left quickly. I found Norman, said goodnight, and went to my room to prepare for my volunteer work. This was filled with more reminders of Ben, since I was working with Hope Loves Company, a wonderful organization that serves children who have a family member with ALS.

Hope Loves Company runs 3-day camps in various locations across the country for families whose lives are affected by ALS. It’s a special opportunity for the whole family to get away and participate in an array of fun activities including boating, swimming, sports and crafts. Since all of the campers have ALS in common, they share an understanding of the experience that need not even be spoken. It’s a beautiful thing. During the spring, I had volunteered to do a scrapbooking workshop in New Jersey, and found it so rewarding that I asked to repeat the workshops at the camp in Camp Emerson in Hinsdale, MA. I am grateful that Hope Loves Company embraces my desire to volunteer and welcomed the idea of a scrapbooking project. Scrapbooking is a valuable tool for the children. Some bring photos from home and we also print out photos taken during camp. It is a way to capture and share memories. Older children can write more of a narrative if they wish. I went a little crazy shopping for all kinds of stickers, and it’s fun to see the kids select their favorites. It’s great to watch them interact with their parents as they look at photos together. I brought supplies for embossing, which lured even the coolest older kids. They had fun, were intrigued, and continued to bond with each other, which is such an important aspect of the camp. Maybe scrapbooking will be something that they will pursue. Maybe they will think about the activity as they look for another outlet for their self-expression.

Some of the scrapbooking stickers. Hope Loves Company camp at Camp Emerson, Hinsdale, MA

I enjoy meeting the families at the camp. For some, I suppose I am the sad reminder that, at least for now, ALS always wins the battle. But, I hope that they also see that I am here, I reshaped my life and I want to be supportive and do something positive to help in the battle against this disease.

The bus ride back to New York gave me five long hours to think about how much my life changed as a result of ALS. It certainly altered the course of my relationship with Ben. Although I had already been my dad’s caregiver, being Ben’s caregiver was a different experience. I don’t want to wash my hands of ALS. I want to support people who are impacted by the disease. It gave me joy to know that people in the Berkshires who recognized me from the NJ camp valued that I traveled to be with them and do a project with the children. Caregivers need to feel that kind of love and caring. For me, volunteering is a way to channel the negative experience into positive, into a way to help others. It’s something that I want to do with my life. I am thrilled that my blog helps others, but I want to expand that to more hands-on experiences, and the workshops allow me to do that. I guess that although the timing was difficult, and it turned me Inside Out, the volunteer work being on this particular weekend is a perfect tribute to tomorrow’s anniversary of Ben’s departure. I find comfort in knowing and affirming that our life, our relationship and our experience with ALS will be a part of my life and goals as I move forward.

These are excerpts from my own scrapbook, which I show to the kids so they can see my own experience with ALS and some ideas for scrapbooking.

             

A favorite page- Ben’s proposal at Walt Disney World!

Ohana Means Family- Who is Yours?

At this time of year, when I think about the upcoming anniversary of the day that Ben left this world, the notion of family comes strongly into focus and reminds me of how my definition of family has changed over the years. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I used to be troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother magnified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. When I lost my dad, I lost the sense of family that I always thought of as my anchor. Family frequently let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. I was someone who always said that family was important- it was also what I was taught- but I didn’t feel the unbreakable bonds that I believed should exist. In addition to grief over the loss of my dad and Ben, I was grieving an overarching sense of family. As with all grief, I learned to co-exist with it despite reminders that still do make me feel sad and alone. However, reflection has lead to new perspective, and the Pollyanna in me has enabled me to expand my view of Ohana. (Click here for Pollyanna’s instructions on how to play The Glad Game.)

Ben and I were Ohana, with or without a marriage certificate. When Ben was diagnosed with ALS, we were not legally married but, of course, there was no question that I would be his caregiver. I had friends and relatives who told me to leave him because we were not married, which was absurd to me, because I loved him and Ohana means nobody gets left behind. His family members were certainly upset by his diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, but they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben witnessed my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was also with him at the end. She and I had a lot of time to talk in those weeks. We were close for a time, but that seems to have disintegrated, which is, for me, yet another disappointment in the experience of family and not really unexpected. I try to focus on the few nice surprises that occurred along the way, in the form of the few family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

I found in caregiving that the people who are least involved have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not much of a comfort to him. This is not the way I want to define Ohana.

Just as I have found ways to reshape my life, I have also reshaped my perspective on family. As I have said before, I am eternally grateful for an incredible group of friends. Though they do have families of their own, these supportive and loving people embrace me and are my Ohana.

Summer is now become a time when I travel to visit some of my friends. I’m beginning to see it as the time I travel to see my family. A few weeks ago, I visited my friend Dorie, which came with wonderful revelations (click here for that post.) Last week, I visited my college friend Monica and her family in Chicago. She’s got two absolutely fabulous daughters, one of whom is my namesake! I love them all. We did fun things like go to a Cubs game (Cubs won!), visit a zoo and discuss the plans for our upcoming trip to Walt Disney World, which will be a tribute and celebration of Ben and my cat, Disney. For me, the best part of the visit was just sitting around on the sofa and talking or watching videos. It’s a beautiful thing to feel like I am part of the lives of these children and to feel like family, accepted, understood and even appreciated for all my quirkiness. I could continue to lament Ben’s and my lack of caring relatives, but I am no longer under that cloud of grief. Instead, I am so very proud and fortunate to be surrounded by people who have been more family than family.

Monica, my namesake, Abby and I getting splashed at the dolphin show at the Brookfield Zoo.

With Monica at Wrigley Field- Cubs win! August 2019

In caregiving, if the people whom you’ve defined as family are not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? If you’re a primary caregiver, as long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family interactions happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends who are good listeners, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of (or at least work hard to fight) anger and resentment, and I have begun to recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful that I was able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge of and responsibility to the caree.

As you move through caregiving, grief, and life, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back. Lip service is irrelevant. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. I have indulged in and expanded my family of friends. Maybe they are not the traditional definition of family. Yet, they are. Like Stitch, I am grateful to have them in my life. Know who your Ohana really is because they will not leave you behind. That is truly something to celebrate.

Stitch gave Ben some extra love! July 2014

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.

 

Yesterday- Memories, Grief, And Looking Towards Tomorrow

On Friday, I saw the film Yesterday. It’s not a Disney film, but I see those, too! It’s a fun film about a glitch in time (the one everyone worried about, which never occurred, at the stroke of the year 2000) in which all memory disappeared of the existence of The Beatles. It’s hard to imagine. I saw the film largely because of Ben’s love of The Beatles. As I frequently do, I wanted to see it through his eyes. When I attend Disney films, I often sharply feel Ben’s absence, and sometimes I do feel his presence, but this time I wanted to be his eyes, enjoying it as he would. It had emotional moments for me, and, even without the obvious title, made me think about “yesterday,” and the concept of time as I’ve journeyed through caregiving, watching Ben battle ALS, coping with the depths of grief and the adjustment to co-existing with it.

If I travel back enough yesterdays, I remember that the first song I ever danced to with Ben was The Beatles’ Twist and Shout. We met at work and at a gala, before we were actually dating, when that song came on, he grabbed my hand and took me to the dance floor. I learned how much of a fan he was of The Beatles and developed more of an appreciation of them. Now, I listen to the albums more often and with more love. During the yesterdays of Ben’s ALS struggle, when we were fortunate to travel to Walt Disney World several times, at Epcot’s England pavilion, I loved watching Ben watch and play the air guitar along with the live bands as they performed music of The Beatles. During the yesterdays of Ben’s time in the hospital, and even on his very last day on this earth, musicians visited him to play Disney music and some of Ben’s favorite Beatles songs, including his favorite, In My Life. On his first day in the hospice unit, Ben had a visit from one of the very kind residents who treated him early on in the hospital, before his tracheostomy and feeding tube. They spoke for quite a while about music and which was their favorite Beatles album. It wasn’t easy for Ben to communicate, but the resident did a great job reading Ben’s lips and I was there to help translate. This resident did not have to visit, but he was a lovely, compassionate soul, and he had to deal with one of Ben’s crises on his very first day as a resident. I know that he will be a wonderful, caring doctor. A lot of yesterdays. A lot of memories. A lot of sadness. But, a lot of love and even laughter in the darker times.

Walt Disney World, 2011.
Ben’ in one of his many Beatles tshirts.

The lyrics of Yesterday start with

Yesterday
All my troubles seemed so far away
Now it looks as though they’re here to stay
Oh, I believe in yesterday

In the film Yesterday, some of the past is erased. It’s a flawed plot, but it did make me think. Imagine if The Beatles had not become The Beatles. Imagine if John Lennon had not been shot. And, more to the point, imagine if Ben had never been diagnosed with ALS. Imagine if there was no ALS? How would life play out? Thoughts like that do at times drift through my mind. It happens often when I see elderly couples walking hand-in-hand, because Ben used to always comment that we would be a couple like that.

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

The concept of time is fuzzy when I think back to my days taking care of my dad and Ben. I measure time by significant events in the progressions of their disease and then “firsts” without them and, of course, milestone dates like birthdays and anniversaries. February is a month I dread because it was my dad’s birthday, Ben’s birthday, the month when my dad died and, most recently, the month that my cat Disney died. Summer is the marker of when I lost Ben. The start of each school year reminds me of the insanity I felt when I returned to school a couple of weeks after Ben died, feeling the drastic change of not having the same caregiving responsibilities, which only magnified the feelings of loss and the accompanying grief. They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. Sometimes my experiences feel like yesterday, sometimes they feel like further in the past.

Indeed, before Ben’s diagnosis, it’s not that life was perfect- it never is- for one thing- my dad had cancer, but an ALS diagnosis sent us into a tailspin. There was always the wish of going back to yesterday.

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

The narrator (Fairy Godmother) of Disney’s 2015, live action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back at my yesterdays and say that after nearly four years, I still feel the pain of losing Ben. Pain has not turned to memory, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. There has been a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also defining and diving into my new “present.” Pain, sadness, joy, anger- a bevy of feelings and emotions related to my yesterdays- are all part of cherished memories and I see that they continue to shape me and lead me towards a bright tomorrow. I even made sure that I visited Abbey Road when I returned to London in 2016- it was a way to honor Ben, have him present with me, and see London, one of my very favorite places but one I never saw with Ben, through his eyes. Yes, I wish I could erase ALS, but this was our unique story. It did not have a Disney happy ending, but it did have love and even some pixie dust. I will carry in my heart all of those yesterdays as I face today and tomorrow.

Feeling like a Beatle, as Ben would have wanted to do.

On July 4- Thoughts of Independence, ALS and Aging

Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

I also can’t help but think of independence as it relates to ALS and to aging.

My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

Ben dealt with a loss of independence as ALS stripped more and more of his abilities. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly four years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Walt Disney, Walt Disney World

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.” This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations, volunteering and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

Happy and Hopeful Independence Day.