“I feel like you’re always sick”
Written in May of 2019
Well… That’s because I am.
Its a quiet life having chronic pain… having an invisible illness. The rage you restrain from the thoughtless yet innocent comments, frustrating simplifications, and pointless suggestions, you turn upon your own body. The rage manfifests ironically into worsening symptoms. The goal is to find peace, reduce your cortisol levels. It feels like holding the blade of a knife and someone saying “just hold it… don’t let it cut you.” You are never safe from your body, always trapped within it. Its not until I reflect on how many decisions I make that I recongize how my body has trained my mind subconsciously. I’m afraid of the pain… I avoid it even when my mind doesn’t know why we said no to that trip or no to sitting like that or not to going out.
I find meditations focused on grounding your mind and body - becoming one with you body to be difficult. When body is pain, when it is the cause of your suffering and stress, the only way to learn to love yourself is to separate who you are from your body. I don’t think this is a long-term way of living, but I’ve recently realized this is where I’ve been. I live with my body, addressing it as a separate entity than my heart/soul/mind. My body’s fatigue rarely matches my mental state. My body’s pain rarely matches my enjoyment of what brought on the pain. My body’s negative reaction to a certain food rarely matches if I liked eating the food. Its living in a constant state of contradiction.
I would like to love my body. To feel like one entity. That I am me - my mind, body, and soul, but my body feels so separate. I look at her and I just feel sadness. I don’t know her. I haven’t felt like me in my body since I was a child. Once my hormones presented themselves in all their “unbalanced” glory causing irregular periods, abnormal weight gain, and a lack of insulin resistance, it all did change. From a young age, I was sick often. Not in a scary way… just consistent. Random colds, stomach bugs, etc. I had even caught bronchitis as an infant, which left me sleeping next to a humidifier at night through my elementary days. When we moved to America, my body took time to adjust to the new temperatures, new foods, and new colds / stomach bugs that went around the youth group. I started noticing around 17 that I was sick A LOT. I would blame it on the travel ( and it probably is where I was exposed to a lot of germs.) Living on my own and feeling the thrill of freedom and running my business (and not writing papers or taking tests anymore) I don’t remember if I was getting sick through that first year out of highschool. It’s all a little warm glow in my memory - the coming-of-age movie year. Then things changed.
At age 19, my roommates found me in bed, crying holding a bag of frozen peas on my right wrist. They drove me to Walgreens to get a brace and pain meds in the middle of the night. I had spent a few weeks noticing the pain. It began to escalate to where I couldn’t turn a doorknob or unscrew my toothpaste cap without pain shooting up my arm and down my back. I thought it was carpel tunnel from my grueling hours of editing. I saw a doctor about it. However as months went by, and then age 20, I was suffering from chronic pain that manifested in my hips, back, and neck. The wrist pain disappeared, but what replaced it made photographing weddings feel impossible. I spent days in bed… and days hobbling around. I was sick nearly every month with the flu, colds, and stomach bugs. It felt like a running joke - I just had bad luck. If someone’s kid had something, I was bound to get it. If I had to get any type of vaccine, I would get the side effects. If I got the flu… I would relapse… twice. My body was weak and my immune system felt weaker.
As I said, the state of my body felt like the polar opposite of how I felt about my life generally. I was young, eager for live. I was getting paid to travel the world and make friends. I was shooting weddings all over America, getting to see old friends from my youth in Turkey, and learning who I was. Trying to balance caring about what was going on with my body was met with the constant thought “it doesn’t matter what i do, i’m in pain, so i’m going to do what i want.” Que the hundreds of hours in the car, planes, and trains… queue shooting over 20 weddings a year.
I had hit a breaking point at some point, as I described in my journal that I felt like my hips were preparing for birth. It felt like they were being pulled from their sockets on either side. I spent long mornings in bed. I went to the dr to get tests done. When they took my blood I passed out into my best friends arms and my blood splattered on the nurse. My Dr gave me a few days round of steroids for inflammation. Turns out I had the flu in my system (probably contributing to passing out) and came down with it within 24 hours of that drs visit. Despite the normal misery and aches that come with the flu, I remember taking the steroids and waking up looking at my hands thinking “ohmygod… why do they look so bone-y.” I looked in the mirror and realized I had just been inflamed for a really long time. My eyelids were flat and I opened my eyes 100%… My body felt firm to the touch, even the fat. My dr’s conclusion was “well clearly its inflammation. Thats whats’s wrong.” and sent me home the next visit empty handed. I puffed up immediately after the steroids (relapsed on the flu) and continued my days in pain, trying to be a normal 20 year old.