My Body

I want to write about my body. Tonight, I'm at a storytelling event. It is so intimate, so personal, so painful and so healing. It is sold out. We are standing in a dark room of mostly strangers listening to brave souls talk, tremble through some of the most painful moments and experiences in their lives. I don't cry but one thing that was said stays with me. She talks about her body as this other entity. Something that existed outside of her. Her body now invites her back. Says that she loves her, tells her to come home, to come inside. And so, I wonder if I did not cry at the event standing in the crowd, I wonder if I will cry now as I am writing this.

I hate my body.

That is the truth.

My body is resilient and strong. It endures for more than I think it can. Despite all its broken pieces, it continues to endure. To wake up each day and move with somewhat grace through the day's motions. This body is soft and smooth. It is delicate, beautifully so. It stands so proudly despite its smallness. My legs are so powerful with all the steps I take with my worn soles and the shoes I've worn away. My body is an object of male appreciation - all the things they say they want to do to this body, how they wish to fold me and shape me, all the holes they want to fill, all the things they want to snarl to my face. My body is small, appropriate and in line with what this society wants all girl bodies to be. Small and in need of protection. This body carries me through each day, from point A o B, no matter how tired I am. No matter how much I don't want to exist on any given day. This body is powerful and enduring and even, beautiful.

I hate this body.

I don't know if there was ever a moment in my life, in nearly 25 years that I loved this body of mine. A moment where I didn't resent this body's limitations, its malfunctions, its delicacies from the organs that fail to work and look as they should, to the bad blood that courses through my veins, to the fingers and hands I now see as damaged, to the legs that remind me of old people - why do my legs have age spots resembling an 80-year old woman? How can this body be me? The way my skin on my face is raised and inflamed, the way my eyes are oo small, my nose too flat, my voice too low, my body not thin enough. There is so much to hate, so much to insult and pick apart. How can someone be so imperfect? How can speech be so mean?

I am not stupid. I know how society teaches us, particularly young girls, to speak so cruelly about our bodies. How many industries and the number of jobs that must rely on the cruel way we speak about our bodies. How many jobs it is to find new and interesting ways to say mean things about our bodies, this body. I am aware that this is a social construct. I am aware these lies are invented. These lies have never been my truth, nor will they ever become my truth. I am aware of the benefits and the sheer necessity to be naked. To face my nakedness and my vulnerability. I know. I hate my body anyways.

It is entirely isolating. Some days, I want to shout - scream from the hills - "I HAVE LUPUS." I have this life-altering illness that shapes every decision in my life. I can't move abroad because if I do, I don't know what I will do about health coverage and my frequent doctor' appointments. I can't go deeper in a pose or I can't run faster because that means I won't have enough energy for the rest of the day. I don't know how to tell potential partners about my lupus because I'm not sure they would want to deal with it. After all, I wouldn't want to deal with it. I'm so scared about getting sick. How do you explain the physical pain of a common cold to normal people? People who have often never experienced great physical pain so early in their lives. If I shout my truth at them, how can they possibly understand? And yet, I want to shout. I want sympathy. I want a second chance. I want to be treated delicately. Granted too much undeserving kindness. I want it all. I do not have it all. I do not shout I have lupus. I have kept it inside for so long despite the resh living on the outside, on my skin always. Despite the questions, the looks, the bullying.

I need to be more open about my body; with my body. I need to be more vulnerable. I need to trust my body. For fuck's sake, I need to learn to love my body. I need to learn to accept all its struggles, my struggles. Acknowledge that some of these struggles will stay with me all my life. They may never disappear and likely, they will worsen. I need to love her anyways. I don't really know how. I spent so long hating her.

I'm hoping to learn. I'm hoping to improve. I'm hoping to love.

May 30th, 2017

August 28, 2016

September 28, 2015

Did You Know?

The following is another attempt at some point over the years to explain the frustration, intense anger and sadness I've felt about my body. It's repetitive. All of it is, and perhaps, it is exceptionally so - for someone who doesn't live this existence. I admit though. It is repetitive, but when it is not repetitive, it is often catastrophic. 

• Did You know that World Lupus Day is May 10th? 
• Did You Know that lupus is a chronic autoimmune illness? 
• Did You Know that lupus is an invisible illness? 
• Did You Know that I have lupus (SLE - systemic lupus erythematosus)?
• Did You Know that's why I won't go near you if you have a cold? 
• Did You Know that a guy once used this as a reason to dump me? 
• Did You Know that in second year (end of 2012/beginning of 2013), I experienced one of my worst and most difficult times with lupus? 
• Did You Know that even though my leg was so swollen and I couldn't walk, I cabbed to and from classes, and to and from exams during the end of October to December 2012?
• Did You Know that I finished second year on time despite how terrible, exhausted and weak I felt? 
• Did You Know that it took well over half a year to recover fully?
• Did You Know how much weight I lost? How skinny I looked? 
• Did You Know that I dropped to the weight I was when I was maybe 13? 
• Did You Know how absolutely sick I looked? 
• Did You Know the amount of time I spent in the ER, at doctor appointments, in bed because of how bad it was? 
• Did You Know at the age of 18/19, I had three blood clots and a pulmonary embolism on top of pneumonia?
• Did You Know how absolutely painful it was? 
• Did You Know I sat awake all night because it was painful to breathe, much less lay down and try to sleep?
• Did You Know that these are all complications of lupus? 
• Did You Know I have had this diagnosis since I was a kid?
• Did You Know that's why I have a rash on my face and my hands look the way they do? 
• Did You Know how rarely I tell anyone about this or having lupus, or how lupus affects my life?
• Did You Know the number of drugs I'm on to keep my lupus in check?
• Did You Know that even though it is free to see a doctor in Canada, it is not free to pick up your meds? 
• Did You Know that one of the drugs that could help manage my lupus and drastically make my life better cost nearly $2000 per month? 
• Did You Know that $2000 per month is not a reasonable or possible expense? 
• Did You Know how tiring it can get? The physical drain, the emotional drain? Feeling like it's unfair to be so young, and sick? Feeling like your life is out of your control?
• Did You Know how strange it is to be so young but so vulnerable to the state of your health? To have your capability capped off? To feel so limited compared to your peers? 
• Did You Know how difficult it is to know and feel your body giving up on you? Collapsing on you? 
• Did You Know that my lupus is still so much easier to manage than many other cases of lupus? Many other invisible illnesses?
• Did You Know that I have always tried very, very hard not to let this diagnosis or this illness get in the way of living? 
• Did You Know that I have an incredible support system? People I love who are helpful, understanding and encouraging when life becomes more than I can bear? 

Lupus is something I deal with on a daily basis. I am reminded and confronted when I put on my makeup in the morning. I am reminded and confronted the three separate times a day I take my pills. I am reminded and confronted when I feel my hands tingling. I am reminded and confronted when strangers stare too long. 

But I am also reminded and comforted by the number of people in my life who are so, so supportive. I am reminded and comforted by how lucky and blessed I am to live the way I do, to have the resources and mobility I do. I have the resources to control the pace of my life. I am able to live as comfortably as possible. I can manage my lupus and I have access to resources when things get out of control. I have friends and family who understand that things can get tough. When I say I'm too tired to do something, or cannot do something, they understand. This is lucky. I try not to take it for granted. I try not to take any of this for granted. I am very lucky. I try to remind myself of this as often as I can - above or along the frustration, anger and sadness I also feel. 

Did You Know I have lupus? Did You Know I live an incredibly privileged life?

A few pictures from that second year when my lupus got the worst it did.