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Dear Body, I’m breaking up with you

There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.

This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….

Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!

Body, I break up with you. Sorry, not sorry.

I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me. 

This is my self love. This is my self compassion. This is my choice.

I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you! 

I choose, I choose, I choose.

My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.

I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.

Sign here X  _________________

Please support Rare Disease Day on February 29th. www.rarediseaseday.us

How Robin Williams saved Superman

In 2004 I read Christopher Reeve’s autobiography, Still MeI had recently been diagnosed with a neurological condition which was quickly crippling me at 22. And Superman had just died.

I didn’t so much read the book as I did listen to it on audio book. Christopher Reeve’s voice filled my car as he read his own words. I still remember how his breathing machine sounded as he gasped for air while still comforting me with his powerful life’s message of hope, courage and perseverance.

While Christopher Reeve’s autobiography is one of the most inspiring and memorable books I have ever read, this story is about Robin Williams and their friendship.

After the dashing hero’s tragic accident, he was in the hospital for months. He underwent a series of surgeries and it was clear he would never regain feeling or movement below his neck. In the days after, Reeve had lost all hope, yet he could not even take his own life, had he tried.

Superman’s best friend was a fuzzy little curly-haired man with sparkling blue eyes and enough energy to light up Manhattan. Robin Williams and Christopher Reeve had met long before either of them were recognizable. They were roommates in college at Julliard and remained best friends thereafter, supporting each other’s acting careers and their families spent time together.

Robin Williams appeared in Reeve’s hospital room, fully dressed in scrubs and a face mask, speaking in a Russian accent. “Time for your rectal exam!” Williams exclaimed. He spent the day visiting with Reeve and helping his friend regain the much-needed light he had lost.

In his book, Christopher Reeve wrote,  “For the first time since the accident, I laughed. My old friend had helped me know that somehow I was going to be okay.”

Reeve and his wife went on to change the face of spinal cord injuries along with the perception and treatment of paralysis through the Christopher and Dana Reeve Foundation. Robin Williams became involved in Reeve’s foundation, and they continued encouraging each other over the years. Williams took a greater role in the foundation after Reeve and his wife passed…what a great friend.

Ever since reading Reeve’s autobiography, whenever I would see Robin Williams, I thought: he may have saved his best friend’s life. And without that friend to penetrate the darkness and shine a light on the hope he could not grasp on his own, Reeve may have never started the foundation which has been a beacon for so many individuals. We all know Robin Williams for his abundance of sensational talents. However, I think I can take liberty in saying that those who he loved knew the kind of friend he was and the legacy of love he will leave behind with them.

My first entry is dedicated to Robin Williams and to friends who lift each other up out of dark places.

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