This is a powerful story of perseverance in the face of enormous and difficult changes to the author’s life. Don’t pass this story up.
by Kristen Steele
May 11th, 2017
I remember when I was young, I had a poster with a quote on it by Carl Sandburg. It said, “Life is like an onion. You peel it off one layer at a time, and sometimes you weep.” I’m a big fan of layers. When you wear multiple layers you have the option of adding or reducing warmth in small degrees. Likewise, when working with students, I start with the top layer, that is easy, and slowly work my way to a deeper level of understanding that is more difficult.
I recently started listening to a book called “Dark Nights of the Soul” by Thomas Moore. The idea is that in the midst of the darkness there are gifts and lessons; creativity and beauty are found there. So I pulled out my guitar to see if I still remember how to play. I remembered that for the first half of my life, writing songs and playing music was at the core of who I was; I wrote about life, friends, and faith. It seemed that in being a grown-up, that somehow that form of creativity had slowly slipped away.
As I sat there, I was pleased to see my fingers still remembered where to go (mostly), and that I remembered most of the tunes to the songs I wrote – scrawled out with words and chords years ago. I found a pad of paper and a pen and got ready for the words to flow. After all, being diagnosed with Transverse Myelitis, Multiple Sclerosis, and Optic Neuritis, all within the span of 6 months, had an enormous impacting on my life. In the midst of my dark night, surely the words would flow from my heart in prose form! After two stilted sentences with a poor rhyme, I stopped.
I realized that over the years, it was not just the busyness of life that pushed the writing or music away; it was the pain of life. Like the onion, I continued to grow layer upon layer of protection over the deepest part of my heart. An unhappy marriage, a frustrating job, self-doubt about parenting, all continued to insulate me from feeling too much pain. Oh, my heart was still there, but it was muffled under many layers of coats that made it easier to ignore the sting of struggle and just move forward. I had to be a grown up. I faced the hard things with a deep breath and threw on another layer. To curl up and be immobilized by the pain was not an option. It certainly did the trick. Life went on. However, it left little room for emotional pleas in the form of songs written from pain and/or joy.
I realized that over the years I developed a kind of pride in this stoic ability. It made me strong! It allowed me to handle difficult circumstances with minimal drama, and move on. The good news is that fortunately empathy is made of a substance that comes in and out of those layers with ease – tears for others, or sappy commercials or movies. I’m on it! For myself? Not so much…
Going through an illness that suddenly strips away your sense of self and independence has a way of cutting through the layers like a knife in the onion. It goes right to the heart of the matter. It makes you feel very vulnerable. When you can no longer walk without balance, and assistance of some sort, all those layers fly off like sheets of paper in the wind.
This illness has ripped back many of my carefully cultivated layers. I have tried to scramble to pull them tight again, feeling cold and exposed. I must push through. I cannot wallow in the pain. Yet, I have to. I have no other choice. I have to find a way to do both; to allow myself to feel the pain deeply, but also learn and grow through it. I must find a way to move forward in this new and foreign body and life. I still have to push through the pain, but do so without all the layers of protection. I have to learn from my pain.
That is when I began writing my blog. It was a way for me to deal with the raw emotion that comes with a life altering disease and transform it into lessons filled with hope and new direction. Throughout my days, my heart and my mind often work together and speak in carefully constructed sentences in my thoughts, like a narrator. It’s like an overlay for a movie with the voice in the background summing up the messages; I’m learning and insight is gained. It has worked. Even during days of depression and angst, it allows me to ultimately focus on the good that is hidden there. When I write, I process the moments and look for the hope in the midst of the struggle. This is the message I want to share with others.
A couple months after my first attempt at reconnecting with my guitar, the daughter of a friend of mine challenged me to write the music for a play we had talked about doing, but it was not a musical. She said to me, “Can’t you just write music for it?” I thought to myself, “Well, maybe…” One night shortly after that, I pulled the guitar out again, along with the script I had written at an earlier time in my life. And just like that, the opening song poured out like all the songs that had come so many years ago. The beginnings of a second song even kicked around within me. Underneath all the layers of protection, the music was still there. It was like being reunited with an old friend. I am still not back in the routine of regular visits with this old friend, but just knowing it is still there, is a great comfort to me. I look forward to finishing the music for the show as requested and performing it with my young performers sometime soon.
So, the lesson of my dark night is this: Remember and embrace who you are/were and what fills your heart. You can never lose who you are at your heart even if the outward body changes. It is what is at the core of you that makes you strong and will carry you through. There are seeds of hope to be planted there, and they will grow. Sometimes peeling back the rough layers of protection, even when we don’t want to, can reveal a something precious hidden within. And that indeed is a blessing!
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs, and a mischievous cat. Diagnosed with Transverse Myelitis (inflammation on the spinal cord causing nerve damage) in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as I rediscover and reinvent life along the way.
I began writing about my experiences as a way to cope with my sense of loss and new realities and move forward in hope. As I learn to let go of my identity as a teacher and small business owner, I have begun to find new beginnings and joys that all began with a seed of hope. It is my desire to share this with others who might be experiencing similar circumstances or just wondering what it is like to navigate this journey. I invite you all to follow me on the journey as I search for hope for life at 180-degree turn.
Her website: www.hope4life180.com.
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