One of the more arcane pieces of Lisa Klimas trivia is that I lost the majority of my hearing in 2009. I grew up hearing to hearing parents and am culturally hearing. I knew some sign language but it was pretty minimal. While I was losing my hearing, I focused all my available energy on learning ASL. I practiced for hours every day. I fingerspelled all day long and sang along to songs in ASL when I was driving or in the shower. My boyfriend at the time learned to sign as well and we signed at home.
After eight years of being Deaf, I straddle the worlds of the hearing and Deaf cultures. ASL has become a part of me. I no longer have to consciously translate from English. I can think in ASL. Sometimes the words that my brain generates in response to something are signs instead of English words. When this happens, it is often a word or concept that has no direct translation in English. Some ideas are just more natively ASL.
My post yesterday was written in response to a recent video that really downplays mast cell activation syndrome. I felt like the wind had been knocked out of me when I watched it. I had an immediate visceral reaction. My inner voice was signing to me. A flat palm brought up to the mouth and blowing gently across it. There are a lot of translations for this sign, none of which perfectly capture the meaning. It is close to nothing left or non-existent. Like you had something in your hand but now it is gone.
I thought a lot today about why exactly this interview upset me so much and what my motivations were for speaking about it publicly. I think it’s because as a community we are so small and hidden. We really can’t afford bad press or harmful misinformation. Most people will never know about mast cell disease. Many will never even hear those words at all. Our stories will never reach everyone.
But we try anyway. We try even when we know that our words will be swallowed by the cacophony of billions of voices talking over us. We shout as loud as we can that this is our story. That we exist. That we are falling through the holes in a health care system that isn’t prepared for us. That this is real and that we are scared and that we need help.
We are a tiny community, a fraction of a fraction of a percent of the people living in this world. A fraction of a fraction whose faces and voices and stories are at great risk every day of never been known. A fraction of a fraction that lives with the knowledge that at any time, this disease could take everything. That any story they tell might be their last. That they might leave this world and become a story.
That there will be nothing left of them. That they will cease to exist.