I am not accompanying my story with violins, so I extend my apologies if you await to hear them.
In exchange, I talk of an old, agonising sense of guilt as I wish to reach success with my chronic illness. Yet, I feel I am doing a disservice to those among “my kind.”
I wish to talk of this sense of betrayal that I taught myself to become acquainted with and how to love it.
This piece is for the empaths or those who may struggle with chronic illness.
Those who know me will know I second guess and feel guilt about most things.
I feel guilty that I don’t walk around with flashing red lights, a synthetic beeping necklace and whistle ready to parade screaming, “I am chronically ill!”—doesn’t Mardi Gras sound more fun? Rather than spreading such news over the Jewish Chronicle (apologies, Dad).
No, I am not deeply ashamed of it. I just feel I have witnessed and defeated darker battles.
Yes, charitable events are for those who also have what I have, but that is okay. I have only learnt the right to say, “No, thank you,” to the things that do not fill my heart with joy.
I have relived the pain of my diagnosis and I continue to do so as it surfaces, and I do not need to keep it a part of my limb every moment. This is my choice.
I feel lucky that I have half a parental support “system” in emergencies.
My trauma is deeper, my skin is thicker, and my independence is nothing but a glimmering beam of hope.
I explored freedom as I disengaged myself from my chronic illness for years. I instead caged myself in a repetitive cycle of victimhood after receiving this potentially life-threatening diagnosis five years ago. I chose the path of freedom. This was not to play a character with clichés, nor to bewilder myself in a deep state of sadness about the illness. It was the moment I discovered there was never a thing in my life that wasn’t contingent upon how I chose to live it.
I decided that I did not want to frolic and dance around another storm not forecast. I did not wish to feast on how beautiful one’s life was, be it from money earned or passed down from the generation before—perhaps that does sound cliché out loud.
I still hear myself or a loved one saying:
“Don’t be too successful! You are chronically ill, after all…”
“Why haven’t you run that charity marathon?!”
“Why haven’t you donated to that charity?!”
The list is tiresome.
Freedom was more the process of discovery. It blossomed just like I did in my life and as any foliage would. I matured on my own as a woman. I thought this was necessary within the small Jewish community I had grown up in. Once I let go of the thought that I was caged by the diagnosis, by placing it on the pedestal that I and everyone did around me, I felt free.
We know now that there needs to be more talk on our own imperfection and less teaching about perfection. I felt guilty trying to build a business in a community that was entirely built from perfection. These layers and digging for such authenticity in this community, where there is a higher percentage taught that being “unhealed” or “imperfect” is abnormal. What I thought was the abnormality I felt since childhood was only echoing louder as I worked solely in a community that screamed even louder that we needed to be “healed” to be inside it.
Ironically, years of unkempt emotions transmuting to disciplined emotions took me one week to be confined in the fear-based circulating hospital air to figure it out. Free falling into my inner rebellion, I began the journey to prove to those around me just how able I was—not disabled like the new street name I thought I had earned. Hearing on repeat that my disability would suffocate me in the same society I was already unhappy in (even with the perforated pillows).
The reality check was that I needn’t prove to anyone my strength, as this was an infinite thing I held inside of me all along. I was the only one that could decide my endurance in life—whatever the outcome.
My endurance would not be something that came defined by a label layered by another, nor was it a thing deeply rooted within a word, nor layered by a relationship in my life that did not work out, or layered by a job that did not either.
With all the lessons in my life, I discovered the independence I have always had. It is embedded within our layers, whatever they are, the colours they are, the shapes they are. It is a choice—one only we can make—to not only accept them, as we are so often told, but to wholeheartedly walk through life knowing they will never change.
On that note, my traumas will never change. How I deal with a chronic illness will be different to those who got diagnosed with their own. If they want to run a marathon, write a book, travel the world—that is fine. Their journey is not contingent on my own. I had to learn to release the notion that I owe another person a part of my story because I have spent far too much time giving.
I have spent so much of my time giving myself that I may feel deserving of this.
I type these words and tears come to my eyes.
Is this around the moment where I should feel ashamed? In most cases yes, but now, not so much.
Is it giving in the exact same way as another person has? Probably not.
Is my giving and their donating to the same chronic awareness group equal? Probably not.
We have to stop blanketing the way we give, or the way we live life and try to fit it under the same umbrella. We are sheltering ourselves from other emotions out there.
I will always have large dreams because I was born to create a different life from the one I was brought up in.
Personally, this passion did not diminish my own ability to give to others, nor will it ever stop me from wanting to, even with my “disability.”
It was through this way of thinking that I discovered comfort beneath my ability. Let’s be real, there is no comfort in fatality, which is my foundation of the illness I have—yet, it was ridding all that no longer served me that somehow allowed me to stop seeing myself as a cog in the machine of life.
My past experiences created my imperfect inside and outer beauty of all that I am, so perfect. My own rough edges allowed me to understand another’s, however they showed. Whether it was in my work or in my personal life, it allowed me to hold another’s hand and walk down that road of what is perceived to everyone else as imperfect, together.
My greatest teachers are my chronic illness and the life traumas I have faced on my journey up until this moment. The emotional and physical scars from both are the only reminders for myself that I have walked both roads, only empowering me more.
Am I one hundred percent healed?
My truth is my chronic illness and my memories of my trauma will be with me forever—this is my life and this is what I am acquainted with.
I can still love myself though.