The outpouring of support I have received since opening up to the world about my being in a wheelchair has been astounding. Since beginning this blog I’ve had an amazing amount of encouragement from friends and strangers alike. It’s helped me to be brave and continue to push forward. I couldn’t be more thankful for both the digital and analog worlds. If it weren’t for my desire to pay it forward to those who have been so supportive, I feel I would have nothing truly worth striving for. Knowing there is so much goodness and kindness in the world is inspiring and gives me hope for the future.
But, no matter how many people send their love, no matter how many others I connect with, no matter how many fellow fighters and friends are cheering me on… I still find myself from time to time with tears rolling down my face. The incomparable loneliness of my new situation sneaks up behind me and strikes without warning.
I like to think I can’t be beat. But there are always those moments where life can slap you down. For the last month those moments have happened more often than ever before. And they always happen when I’m by myself, sitting in silence. I used to love the hushed quiet of the spinning world. However, being alone with that sense of spinning makes me realize I am no longer in sync. I am reeling. It can make me so completely aware of my isolation and mourning for my previous life.
I learned from a podcast about a chatbot app where artificial intelligence will carry on a conversation with you. The creators of the app claim people have a hard time deciphering if the chatbot is human or not. So, being the curious cat that I am, I had to google it. And you know what I did? I sat there for an hour or longer chatting with the thing. I didn’t talk about anything profound. I just, shared what I had done so far that day, what I had to eat for lunch, what I was craving for a snack, how badly I felt for it knowing it would never taste human food. I think I spent most of my time enlightening it on the deliciousness of my favorite world cuisines. I recalled detailed menus from my favorite Thai, Indian, Greek, Italian restaurants. I even shared my favorite personal pizza inventions (Mmmm, white truffle oil, blanched spinach, minced garlic, ricotta chunks, and fresh goat cheese (my magnum opus of pizza creations)). I even found myself smiling at its responses, “Oh, Evie, you’re so sweet to think my pizza would be that tasty!” If my parents had been home I’m sure they would have had me committed.
Boredom can be my biggest enemy. Gradually the things I enjoyed doing before in my downtime became monotonous. I’ve always been a dreamer and a lover of imagination. But the simple acts of enjoying a movie, or living into music, are things I have been avoiding at all cost.Time passes differently now. Before, I would maybe wait a day or two, possibly three, to respond to people’s texts, sometimes altogether forgetting! I’d check my Facebook messages once a week or so. Now, I’m glued to Instagram, Snapchat, Twitter, Gmail, Facebook, Pinterest as soon as I wake up. My face is plastered to the computer screen awaiting posts in my news feed from people asking for advice or needing a caring ear. I’m always one of the first to hit the like button or respond with an encouraging paragraph. My fingers fly as I write response after response, everything from a love heart to an article belonging in The American Journal of Medicine. No matter how many dozens of conversations I have happening simultaneously, no one can ever respond quickly enough to satiate my need for company. One sentence replies can send me into a frustrated tizzy. I try and wait at least two minutes before writing back. I usually end up staring at the blinking cursor counting, “M-i-s-s-i-s-s-i-p-p-i” in between seconds. I usually only last 30 or so.
This room of mine once was my sanctuary. Now it can feel like the slammer. Sometimes I feel like a passing breeze in people’s lives when once I thought I would be a force as powerful as a hurricane. Loneliness can bring on the sensation of lacking Oxygen. But rather than your lungs being desperate for air, it’s something in the center of your chest gasping for intangible other worldly air. A soreness deep within your soul. When my tears flow I’m not even making my scrunched up crying face. I’m stone cast. The tears sometimes stream to the point of soaking my shirt. I’ve stopped wearing mascara because I never know when I’ll be struck. It occurs less and less often now. But still unexpectedly the deluge can hit.
The other day I learned I am not supposed to ever swim in the ocean again (due to the bacteria in the water putting me at a high risk for bone infection which could lead to amputation or sepsis). Those of you that are close to me know the sea is my reverie and refuge. The news hit me like a tidal wave.
Later that day when night fell, it began to rain. Droplets fell on my skylight as I stared up into the night. It was the first time since being diagnosed with Charcot I've been in silence with myself. No music, no social media, no movie playing in the background. Just me and the rain. At first it was hard to quiet my thoughts. A feeling of trepidation pricked at my mind. A fearing of all my fears I would face without the buzz in my ears to distract me. Everything I have dreaded could happen throughout my life (loss of loved ones, career, relationships, health, independence), all of the things that define us in this world, have come true in one way or another... and every time one has come to fruition I realize, "Hey this isn't so bad. Now I can..." And that's exactly what facing the obstacle of being alone with my thoughts brought me.
Now I can breathe deeply. Now I can rest my mind. Now I can hear the world outside in its constant, solid state of being. That solidity makes me feel physically whole again. Knowing the ground will always be there to catch me. It's almost as if it’s reminding me that it was here before me, it will be here after me, and to not blunt the time I have now by shunning the being I am here to love most, myself. Eventually, I drifted off to dreamland. And rather than tears sending me to sleep, peace welled up within me.
I have always felt the sea is a healing place. I still do believe that. And I still believe I will live out my mermaid dreams someday.
So rain on down and fill my sea you skies threatening squalls over me. Flood my shore, overflow my riverbanks, submerge me in a stream seething and surging. For water is the stuff of tears, and tears have washed me clean. I have looked upon the dawn with rivulets running, staining my cheeks salty. It is daybreak’s light, after the darkest of nights, that illuminates my radiance like the sun sparkles against the cool dewdrops on a freshly cut lawn. I welcome you with arms outstretched. I dance within your downpour of distress. I drink you up, every drop of sadness you dare to drench me in. I revel all night in your torrents and tirades. For it is water that gives me life. It is water that enables the vines that restrain my joy to release upward and bloom. I am made of you, and you are made of me. I am born of the stuff of storms. Soon you will become puddles for me to skip through, and eventually, an evaporated memory.