You, Me, and the Unending Sea
You stretch in front of me
Making sure you still can
I remind you of your fallibility
That tomorrow you may not be able to
That tomorrow you may be half here Tomorrow you may grieve for what’s lost
Or perhaps for what’s remained the same
The Me in You
I’m currently cozied up in bed, surrounded by pillows, with my furry kitty snuggled up against my left leg. As Larry David might say, “It’s prettay, pretty good. As I type, I feel connected not just to my computer but to the wider world beyond my four walls. And to make the moment even more perfect, there’s a hot cup of coffee sitting right beside me. Right now, I’m immersed in relaxation and peace, pausing to feel the warmth of the steam on my upper lip. However, beneath this serene surface lies a truth I grapple with daily: my dependence on assistance due to my disability. It’s not an easy truth to admit, so I choose to push aside those thoughts and focus on the stillness of the moment.
For the longest time, I regarded my disability with fear and avoidance, as if it was some sort of personal failure. Sometimes, I still do. Those attitudes were something I had absorbed from the culture around me, even from the people closest to me who loved and cared for me. But it’s tough to confront these biases and assumptions, especially when they’re so deeply ingrained.
At first, concealing my condition was relatively easy. I hadn’t progressed very far when I was diagnosed at the age of 20 with a slowly debilitating, incurable, and rare condition that made me different from everyone else. It altered my career and influenced my decision about having children. In the first decade, I lost the ability to run. Doctors kept promising the development of treatments and I was still moving through the world relatively freely. Setting aside any hopes I may have entertained of winning an Olympic gold medal was easy to accept as I believed this would be a temporary plight. The next ten years, everything got harder and my gait swayed — just not in a sexy way. One doctor promised that a cure was just ‘5 years away’, another doc thought maybe 10... maybe. As I approached 50, I started hearing that I was courageous and that my stubbornness and willpower kept me walking. I started questioning whether a treatment was ever coming — let alone a cure. I tried alternative medicine – acupuncture, massage, diet, and as much exercise as I could muster. The disease had its own plan. As I move forward through life, my hopes for treatments and cures feel like old and faded whispers. The reality of having to live as a fully disabled person in an able-bodied world seems more likely than ever before.
The funny thing is, when the thing I feared the most in life finally happened, I realized how weak the big bad monster actually was. All the feelings of worthlessness, self-loathing, and doubt. All the comparing myself to others and beating myself up inside. I didn’t even know I was doing it. All of that hurt. For what?
I have an old colleague who, when considering anything created, used to often question, “What if...?” She knew, as most of us know at our core, that a creative act on the face of it should never be assumed as good the first time it is conceived. We can always see if the original art, blueprint, sketch, or idea communicates its intent and feels right to the viewer. We need to explore the first attempt and always ask if it could be better. But what if creation itself is neither good nor bad? What if, when we are created, our Soul gives more than it takes, and in that giving is creating circumstances that need addressed? By extension, what if I ended up creating my disability in order to heal something deeper within me?
I acknowledge that many take offense at this thought. Surely, an infant child with brain cancer did not create itself to have physical issues. Surely, young teenagers who are newly diagnosed with schizophrenia could never have actually created the experience. However, I ask you — is it possible that we consider this idea unimaginable because we believe we possess a clear understanding of good and bad? I am beginning to believe that our vehement rejection of this concept stems from our cultivated beliefs, which are shaped by culture. A culture that determines what is deemed good or bad, acceptable or unacceptable, cannot conceive of innocent individuals creating dire circumstances for themselves.
So, with all of this deep thinking, I’ve started wondering if surrendering to the here and now is part of the healing I’ve been looking for. Lately when I go out, I meet with old friends and new ones, and roll around on my own. I move through the world (at least flat surfaces) freely. I’m not thinking about taking small slow steps so as not to fall, and I simply don’t care what others think of my physical situation. I’m not uncomfortable. I notice that I think more clearly, listen more fully, and enjoy moments more thoroughly.
It doesn’t take a PHD to understand that life’s moments can be missed when we are listening to our inner anxious voices. Yet sometimes, when I can get mine to quiet down, when my head stops criticizing myself, the silence breaks through to a new sound. If I listen closely, I begin to discern my own energy in others — and I’m in sync with a new kind of strength in the life around me. I am discovering a renewed love for myself.
That said, I’m still a work in progress. I don’t possess all of the answers to my questions, and you may think that the questions themselves are completely off base and insane. Perhaps you are right. I still hope and pray for perfect health and physical strength. I long for what I used to have and I go to sleep every night with the inner prayer that I will awaken anew. Everything will work as it once did. Until that morning, I will continue to expand my experiences in my own way, and I will take solace in the new peace I found by relaxing into a situation, listening more deeply for the next step, rather than battling through the chaos.