Where Do I Go From Here? What Would Pocahontas Do?
Where Do I Go From Here?
Written by Marty Panzer and Larry Grossman
Performed by Judy Kuhn as Pocahontas
The earth is cold
The fields are bare
The branches fold against the wind that’s everywhere
The birds move on
So they survive
When snow so deep
The bears all sleep to keep themselves alive
They do what they must for now
And trust in their plan
If I trust in mine, somehow I might find who I am
But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?
My world has changed and so have I
I’ve learned to choose
And even learned to say goodbye
The path ahead’s so hard to see
It winds and bends but where it ends
Depends on only me
In my heart I don’t feel part of so much I’ve known
Now it seems it’s time to start
A new life on my own
But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?
May was a bit rough for me. May is ALS Awareness Month. Milestone dates and occasions are always significant. Even though it is not a milestone in Ben’s personal journey with ALS, it is an important time for me. I want and need to participate in the month to raise awareness of ALS, but I never feel like I really make a difference. I’ve been questioning so much about where I am and where I should be in my life. I feel like the sharpest pangs of grief have begun to subside and I have wanted to think that things have been steadily improving. And they have been improving in many ways. Unfortunately, the questions haven’t really ended, they are just different. Now, I question what I should be doing in terms of moving forward, in terms of my relationship with ALS, in terms of grief. Where do I go from here?
There is so much that resonates in this song. Since Ben “left,” as he referred to dying, I have grappled with where to go with my life. I stopped questioning how I survive after I lost my mom, which was my first major loss and was especially earth-shattering because we were so close and it was sudden. The first year, I went through motions. Just like animals Pocahontas described how the bears instinctively know what they have to do from season to season, I just kept going through motions, sometimes instinctively, sometimes lead by others, but never really thinking. Now, it is nearly four years since I lost Ben, and although I have gotten back on track and know that I have much to be grateful for, the setbacks really throw me and I am frequently anxious about my plan for the future and I rely on a wealth of wonderful memories to sustain me. When it comes to the future, there are people who are fine to say that they put things “in God’s hands.” I have never been one of those people, despite being a person who does have faith.
I have done a good job of reclaiming the things I always loved to do. I have resumed active theater-going, socializing and I even travel a bit. Still, there is an anxiety. I feel like I don’t have a strategy for my life. There’s a lot of worry and emotional analysis. There is also judgment. I have had to deal with the judgment of others, to my face or behind my back, but I also judge myself. Am I balancing past, present and future? How do I effectively help others? How do I best help people with ALS and their caregivers? Does that keep me in the past? How do I maintain my connection to the past and to Ben’s journey with ALS while forming a new life and hopefully finding love again? Will I find love again or will I be alone? As much as I would like to find a new relationship and have that kind of love, I don’t seem to have found a good strategy for getting there. Each night, I look at my photo of Ben that is my laptop background, I say good night to him, and wonder if I will ever find someone who “gets” me the way that he did. He doesn’t have to be a Disney prince, either. No matter how good I feel about the strides I’ve made, and no matter how many happy days I have, there is an uneasiness that keeps me from feeling contentment.
While some people think I should put more distance from the past and focus more intently on my vision for the future, being by Ben’s side as he bravely battled ALS changed me. Just as my dad’s cancer began to progress and Ben was diagnosed with ALS, I was launching a pet souvenir business, Pets en Voyage. I slowly put it aside because I couldn’t juggle full-time work, full-time caregiving and building a business. The business was a dream come true for me, and one Ben and my dad, the consummate dog lover, were so excited about. I always said that I would come back to it, but whenever I begin to revisit it, I find it a painful reminder of those days of illness and chaos. I am not letting go of it, but cannot seem to fully embrace it again, either. Not yet.
I was profoundly influenced by my role as a caregiver, and when I lost my dad and Ben, and I lost that role, I did lose a big part of myself. I feel most comfortable when I find ways to tap into that side of myself. This blog has been one way to sort out my experiences and spread the word about caregiving and ALS. I have been touched by the connections I have made and comments I have had from cALS (Caregivers of people with ALS) and pALS (people with ALS) in response to my posts. I was inspired by earn my Certification as a Caregiving Consultant but have not yet figured out how to use it more effectively, though I participate in various online ALS and grief support groups to lend an ear, share my experiences and persistent questions, and offer ideas to those currently struggling with caregiving.
When I was a caregiver, my role was clear: the goal was to keep Ben comfortable and get him the help he needed. There might have been twists and turns, and a lot of curve balls, but I had to come up with plans, and then back-up plans! Now, I’m just not sure of where to go and what to do for myself. What I know, and what I learned as a caregiver, is that I am a born teacher and caregiver. I also saw that I could be a strong advocate for my dad and Ben, but I did not seem to know how to use those skills for myself.
As a teacher and someone who spent more than 30 years in the field of arts and education, I love kids and could not help thinking about how difficult it must be for children to watch a parent or other family member navigate ALS and take on caregiving responsibilities. I have felt that my background could be useful to children who are affected by ALS in their families. A while back, I was able to collaborate with my local ALS chapter to conduct a small workshop for kids who had a parent with ALS. We did crafts, ate pizza and ice cream and talked. Click here to read my post about that experience.
Earlier this month, I had the supreme privilege of working with Hope Loves Company, an organization dedicated to supporting children whose families have been affected by ALS (click here to visit their web site). Hope Loves Company runs camps for children and their families- it’s a special opportunity to get away, participate in all kinds of activities, from hiking to fishing to music and crafts. Also, it is an opportunity to be surrounded by other people who share, understand and can commiserate about the experience of ALS and its impact on our lives. I was a facilitator of a workshop where the children made scrapbooks- some brought photos from home and we also printed photos from their activities during camp. I believe that going through photos can be a very valuable process- it’s a time to relive memories and remember our important relationships- and I was happy to hear the stories that the children shared with me. It was fun and meaningful, and it felt like I was exactly where I should be. I look forward to continuing my volunteer work with this wonderful organization.
It feels good to me to work children in this way. I want and need to follow a path that lets me discover ways to reach out to young people affected by this disease, but also to young caregivers in general. I’m just not sure exactly where to go or how to get there.
Now it seems it’s time to start
A new life on my own
But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?
I have lots of ideas, but I’m a worrier by nature, so I tend to identify the obstacles before I see a clear path. While it’s probably not terribly realistic that I will resolve everything during my summer vacation from teaching, it’s my plan to address ways to expand my work and relationship to ALS. Summer is always strange because it marks another year that Ben spent in the hospital and then left the world, so it’s good to have a focus. It’s especially meaningful to make that focus something that relates to him. Yes, I keep the dating thing on my mind, too, but that kind of strategizing seems to be more daunting to me.
I do welcome ideas and brainstorming, so please feel free to comment or email if there is a project you’d like to consider or implement.