I wrote the following piece when I was 29. Before my hysterectomy and finding out I had early stage cancer. Before using a cane. Before Improv. But I think that this piece was profound in my personal declaration to connection with people around me. Writing it I was reminded that they way out of my dark spaces is through love, love for myself and everyone I encounter. For me, LOVE is the anthesis of all that is negative within, both physical and emotional. I love you, I really do. Thank you for reading my words and hearing my thoughts.
"As long as I remember, I have been in pain. The emotional, physical, and mental toll that it takes is immense. I rise from my bed, eyes open to a brand new day, and in that moment I hope with everything I have that nothing hurts. I swing my feet over the side of the bed, gently placing them on the floor. Sometimes there is a hint but usually there is nothing. I rise, my weight bearing down on my mangled hooves. Immediately the throbbing tears through me and they become alive; they have a heartbeat all their own. Searing, aching, burning, tearing, throbbing—it doesn’t matter what the sensation is. My heart sinks and I prepare myself for another day in pain. Once on my feet I take inventory on the rest of my parts: headache, back pain, shoulder burning…my body is alive with horrific sensations.
I sigh and move on. All I have ever known is pain. This is my reality. At 29 years old I’m exhausted. My brain struggles daily to comprehend the experience. It takes everything I have to get dressed, make coffee, and then find my seat on the couch. My bottom fits perfectly in the crevice. Guilt washes over me. Questions I bottle up about whether or not I am living my life to its fullest bubble to the surface, overcoming my thoughts. I try to take each day as it comes, to live in the present, and to make each day memorable. Sometimes, all I can do is withdraw. Withdraw from myself, from the pain, from everyone around me preserving my peace of mind. The pain drains every motivation or expectation I have for the day. It alters the plan, so I wonder why I still make a plan. I’ve become accustomed to flexibility in everything I do. From one moment to the next I don’t know what cards I hold. From energetic to lethargic, or the other way around, keeping simple commitments becomes a feat of strength and resolve.
Looking upon my life, I never thought I would be here. In limbo between the able bodied and the disabled. This square peg can’t find a square hole, they are all triangular…one end fitting in the others on the outside. Appearing able bodied it is assumed that I am healthy and “normal.” My physical abilities suggest otherwise. However “disabled” I am, I am not “disabled” enough…or maybe not enough to fit into that world. Invisible disabilities hinder us from finding an identity all our own. Looking good and feeling awful is a hell on earth. I see doubt and disappointment in the eyes of those close to me. I take on their perceptions, as if I am somehow responsible for the ignorance.
During times of immense pain I begin to doubt myself and ponder whether I am just, well, losing it! I wonder if it is all merely a figment of my imagination, a shadow of the truth of the life I experience. Who am I? What is real? Is this real? How bad is my pain? That is the question that haunts me the most…. Relative to someone else’s experience, is this pain really that bad? Or…would someone else just describe it as a mild ache? I often distrust my own feelings and experiences. The suspicions mirrored by others seep into me, and like a monster in a nightmare, they envelop my self-concept.
Distrust and relativity.
Growing up I used to explain my pain to friends and strangers. I have what some might call an odd habit of opening up to anyone, and everyone. (Personally, I think sharing is the only way we can connect with humanity ….). As a teenager people would pity me and what I had gone through. Attempting to ease their discomfort I would remind them that everything in life is relative. Some days, the worst problem I experience is a hang nail or a bad hair day. Others I can’t walk, or participate in the day’s events. My understanding of pain is relative to my perceptions and experiences. Their pain would not carry any less weight, because it’s relative to them, to the impact it carries in their life. Now, as I grow older everyday day, I lose pieces of this viewpoint. Doubting my instincts raises red flags as to what my collective experiences have ‘taught’ me along the way. These lessons I claimed to have learned are based upon, what? Lies? Truth? Denials? Having lost myself in the pain, it’s all I have left to cling to. Me, I, Myself have disappeared into a black hole of disbelief.
Where shall I go from here? Aware that I cannot trust my collective past, how do I move forward? I do so by creating a new self-concept, one that is hopeful and that perseveres through all tests of character; strength is my priority. I start by practicing daily gratitude. Recognizing all that is good and positive in my life will help me declare what I want. By focusing on people, not myself or my pain will propel me out of a negative vortex of thought. I will practice using my energy for with good intentions and service intended for others. I will marry myself and pledge to love me in sickness and health. However, I will not accept the pain or the sickness as my future. Striving to better myself, I’ll remember that whatever food and drink I consume becomes part of me. My past will not define who I become; I will let go of the doubt, the reservations, and the fear that I may not have ever known who I was. Having been lost in that black hole of pain and disbelief, I vow to trust myself. Instead of indulging in negative self talk I will remind my inner child that every emotion I had was rooted in honesty, in the truth of a fleeting moment.
I will not just survive this life, I will thrive, and I will prove it by giving all the love that I have to myself and others."
~EK, age 29