April 30 2017

What does your tattoo mean?

I saw this tattoo someone posted yesterday.  It was script across the forearm: “Better a bag than a box.” I just stared at the image; stared until tears welled in the corner of my eyes.
When I was twenty my disease got bad. I ignored the pain for a long time. I kept thinking that if I ignored it or kept busy, it would go away. After countless scans and doctors’ appointments, a week-long hospital stay with a feeding tube, an abscess, and a healthy dose of reality, I found myself sitting in a surgeon’s office.
Believe it or not, I can’t remember the exact words he used. I can see images from that day: him pushing a Kleenex box my way, sitting on a lone bench in a ginormous clinic all alone, crying. I can even see the drawings he did to describe what would happen next, but the words…they escape me.
He wanted to perform surgery, one that would result in a temporary Ostomy. It was not a suggestion, it was more of a do-this-or-live-out-whatever-days-you-have-left statement.
I was just a kid, what did I know about it? What did I know about anything?
I felt like a victim. I was angry, I was afraid, and I was alone.
I went through with the surgery, but not as a survivor; not even as a girl who yearned for a future, but as a kid who was faced with an impossible choice.
Being sick, to me, is as normal as breathing. I wouldn’t know any different, yet I cannot even begin to describe how much I hated myself, my disease, or my bag in the months that followed. The surgeon was true to his word, the Ostomy was only temporary, and I wish like nothing else, that I could have known then what I do now. I was so mad at the world that I didn’t take the time to understand or appreciate this magic, this chance at a life, at a future. I spent so much time hiding away in my apartment and blaming all my problems on the bag that I never got to be thankful for it.
It saved my life. That surgeon, saved my life.
After thinking all of this, I thought, “Who would tattoo something so powerful and personal on themselves?” And then I realized: Tattoos are not supposed to make sense or be for others; they are a way of sharing with the world a little bit of ourselves.
 Shackles
April 29 2017

F.I.N.E. – Frankly I need empathy

I work in a fast-paced customer service environment; I cannot begin to tell you how many times a day I hear, “Hey, how are you?” Truth be told, even without the working environment, hearing that question is a commonality.
It is ingrained in our brain as a social norm. We don’t ask out of a genuine curiosity, in fact I would say more than half the time people have moved on with their dialogue without even hearing your answer. Perhaps harder to stomach than the disingenuous population are the people who ask sincerely.
As a chronically ill person, I know deep down nobody wants to hear how I am.
Nobody wants to hear I am worse, or that I cry alone every night. They don’t want to know that I physically cannot sleep, or that on the nights that I can, I get woken up with an indescribable gutting pain. So I lie. I tell everyone I am okay, or I tell them I am fine. Maybe it’s a perverse way of sparing them, but mostly I do it to spare myself.
The truth is…when I say fine, I really mean Frankly, I need empathy.
Often misunderstood is the difference between empathy and sympathy. I don’t want anyone to pity me, or feel sorry for me, I just want people to try and understand for a moment where I am coming from. I don’t want or need anyone to physically feel my pain, or shoulder my burden, I just want to know that I can be myself without hesitation.
If it were up to me, nobody would have to live this way. There is not a person living or dead that I would wish this disease on.
Life is not always easy, but we can make it better by being good and kind to one another.
All I ask is that next time you ask how someone is, do it with care, or with a sense of empathy or purpose.
April 29 2017

Crohn's- My angel, my devil

Growing up, we have all heard the story of the proverbial angel and devil that sit opposite each other on our shoulders.
One speaks of innocence and is often portrayed as our conscience, while the devil sits askew and whispers of danger and seduction.
I grew up with neither. Upon my shoulders for as long as I can remember has sat Crohn’s, my fair-weathered friend. It has guided me both consciously and seductively through my life, long before I knew its name.
Crohn’s, you see, is my north star; for better or for worse, it counsels me. It reaches out to me in the best and worst moments of my life. It speaks of pain, insomnia, fear, anxiety, frequent bathroom trips, exhaustion, and fatigue.
Yet, it also calls like a siren song and speaks of strength and courage. It reminds me that I am more, that I have survived. For as much hatred as I have for Crohn’s, there is an equal amount of love. For this disease, much to my own chagrin, is my best quality.
I am who I am because of it.
Perhaps Crohn’s isn’t as eloquent or picturesque as Faust intended, but then…..what is?