On Walt Disney, Finding Courage and Being My Own Caregiver

It has been about a month since I have been able to commit words to paper, or keystrokes to keyboard, as it were. I spent the summer doing a lot of introspection. Maybe, on some level, I was inspired by the looming milestone of my 60th birthday and wanting to move towards making some of my wishes come true. Turning sixty is, for me, a notable milestone, but I possess my mother’s strong inner child. In a way, I was looking forward to getting past the age of fifty-nine, since that was the year that my mother died of a sudden, massive heart attack. Fifty-nine did end up having a health scare for me, though, thankfully, I am still here to tell the tale.

As part of my self reflection, I did go down the rabbit hole of reading some self-help books, and I found a couple that truly resonated with me. I also practically meditated on Walt Disney’s inspirational quotes, including “All our dreams can come true, if we have the courage to pursue them,” “First, think. Second, dream. Third, believe. And finally, dare,” and “The way to get started is to quit talking and start doing.”  I committed to these ideals by turning wishes into goals. I finally began to write a book based on my blog that is part memoir and part guided journal for caregivers. I have not yet completed it, but I have loved the process and feel that it will be a heartfelt and valuable book. I also began to explore writing for children, which is also something that I have wanted to do for longer than I can even remember. I took the time to notice how much peace and self-awareness I find in writing and nurturing the sparks of creativity. I struggle with confidence, but I try to focus on doing rather than interrupting the flow with doubt. Where teaching has become a stifling frustration, pursuing other avenues has given me a sense of optimism and fulfillment. I embrace the positivity and that has felt good. The summer felt productive, personally and professionally.

As with so many stories, I experienced a twist of fate towards the end of the summer. After a series of tests and biopsies, a few weeks ago, just before my birthday, I discovered that I am facing a health challenge. I pat myself on the back for being on top of cancer screenings despite my dislike of all things medical. My reward is that the problem was identified very, very early, and I have every reason to believe that I will be absolutely fine. Of course, as with many health problems, it was unexpected and jarring. The outlook and plans that I cultivated over the summer felt shaken and I have had a difficult time summoning the positivity to continue my creative work.

Waiting is always difficult, and when it comes to medical ordeals, I think it is even worse. I am trying very hard to employ my most optimistic mindset despite my Inside Out emotions that are all over the place. Logic tells me that I will do what I must do and will triumph. Emotions tell me that this was not the way I wanted to begin this new decade of my life. With all this swirling around my mind, it was hard for me to even feel “happy” about my birthday. There have been a lot of tears and “what if…” moments going through my mind. I did, however, feel the joy of profound gratitude that I was surrounded by the love of dear friends who wanted to celebrate me, which is usually something beyond my comfort level.

I debated sharing this information here, in such a public way. In fact, I have been reluctant to tell many people. On a cosmic level, I don’t know if I want or am ready to state it for the universe. Ultimately, I felt that caregivers might relate to my experience. Although I do not yet know exactly the full extent of my medical circumstance or treatment plan, my mind keeps drifting to memories of caregiving for Ben and my dad. I wonder what would have happened if this occurred when Ben and my dad still needed me to be their caregiver. I remember that when I broke my shoulder, my biggest worry was how to care for them, and it was a huge relief that Ben was still fairly independent, but I defied medical advice and traveled to visit my dad and drive him to appointments. Interestingly, while I never thought twice about missing school when my dad or Ben needed me, I am already worried about missing school and taking time to care for myself. I am now faced with the fear, confusion and helplessness from which I tried to shield Ben and my dad. I have to question why caring for others is so very different from caring for myself. Don’t caregivers owe it to themselves to care for themselves? My caregiving days are over, but why do I have such trouble accepting that I am now my own caregiver? It is time for me to call upon the fortitude that I showed to Ben and Daddy. Easier said than done.

My caregiving days and days of grief taught me a lot about people. I consider myself to be very fortunate to have amazing friends who have been and will be there for me. Selfishly, however, I am scared and devastated that I don’t have that one person who is there for me the way that I was there for Ben and my dad. Maybe my experience as their caregiver will empower my own inner strength, resilience and willingness to lean on my trusted and cherished friends. I also know that opening myself up to others can also bring unwanted and negative energy from people. I do not want to be asked a lot of questions, particularly from people who ask either out of perceived obligation or for the drama that fuels them more than out of genuine concern about me. I do not want a lot of unsolicited advice with the “have to” and “should” commentary. I also do not want to hear from the suddenly abundant self-proclaimed “empaths,” who, in my experience, do little more than make situations about themselves rather than the person they claim to care about. I will have to find for myself the voice I used to advocate for Ben and my dad.

The reality is that I took a backwards tumble over all the positive steps I took during the summer. All my efforts to envision good health were tossed out the proverbial window. Despite this, my heart and mind recognize that the groundwork I set this summer offers me hope for the future, and those ideas still motivate me. I need to work through my feelings, much as I had to work through my experiences in caregiving and grief. I think it is a good sign that for the first time since I learned about my health issues, I wanted to write a blog post. Also, for the first time in a few weeks, I resumed work on the second draft of my book. And, I have continued to participate in my writers groups and writing classes because I did not want to dwell in sadness, choosing to live in whimsy and creativity. I want to engage with things and people that comfort me and guide me forward. One of my very favorite quotes from Walt Disney is, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” I see that in myself. I stood by Ben and my dad as they faced their illnesses. During that time, I lost myself, but I emerged from the depths of grief discovering new sides of myself. I tiptoed back into life until I was willing to plunge back wholeheartedly, accepting the good moments as well as the setbacks. Now, I need to be there for myself and keep moving towards my dreams, even if I confront a few Maleficents on my journey. I just need to find a wishing well.

ALS,Caregiving,Grief,Walt Disney World, Disney
Looking ahead…