Its really hard to express what shame does to you. That feeling of doing wrong and being afraid of the judgement of others. Its scary at how much others words or opinions matter. How much their actions, but more their reactions matter. When did feeling ashamed in front of people become more important or take up more mental energy then feeling ashamed wronging ourselves, body and spirit in front of our Lord?
Since posting on social media about my sons challenge to raise money for the children of Gaza, I have received a constant trickle of questions and raised eyebrows from some family and friends.
"I didn't know your son had a bone disorder?"
"but how can he? looks fine to me."
"why did you not tell me?"
Perfectly valid questions. A response I expected of honest concern and interest especially when for many years I had never mentioned of the sort. However the questions for me remained.
How does one describe something that the untrained eye cannot see? How can I tell someone that though he looks like any other average child his age on the outside, his insides tell a different story?
Why did I find it so hard to share? what was I afraid of?
The hardest battle in the past had been trying to explain that my child has Hereditary Multiple Exostoses - a condition of benign bone tumours growing from his skeletal frame throughout his body, and being greeted with the judgmental stare. This then often turning into a barrage of intrusive questions and statements full of pity, closely chased by soul destroying comments..
"Oh dear you have a genetic disorder in your family?"
"Did you not check before you got married?"
"Feel sorry for you, what kind of life will they have?"
Sometimes the lack of empathy by others with regards to difference or disability be it physical or mental can be one of the key factors that people do not share. Sometimes the reaction of it being something repulsive or "out of the norm" can often leave people feeling inferior, lacking self belief and self worth.
Sadly due to the shame that others had made me feel I had chosen not to tell people as they simply would not understand. To have one child with the condition would be "bad enough" but two children would be "catastrophic" I expect? My protectiveness as like any other mother, deflected judgement and pity from ever setting sight on my children.
I think as I have developed as a therapist and now becoming an advocate of fighting "shame" in the wider society as a whole, I thought I must practice what I preach. To not be afraid, and hide from the labels others may attach. Speak our truth without fear. To trust that if my Lord can put us through it then he can take us out. If He makes it difficult then He is bringing us closer to Him and He will send mercy and ease when He wills.
Alhamdulillah though for a while our story had remained untold to others our home has always been a vast open space. A place where there has continually been acceptance and celebration of who we all are as individuals and a collective. My son has never felt different and has embraced his condition. He is never afraid to share with his friends and with peers that he lives with a bone disorder. There are good days and there are bad days but we work as a team. No one is left out or left behind.
Sharing my sons story for me has been no easy task. I share it as my sons courage has taught me to be as fearless as him. Mashaa'Allah tabarakallah.
May Allah swt grant all our children health happiness and success always in this life and the next and may we speak words that encourage and empower, not words that tear others down. Ameen.
© Aisha Mirza 2014
