Reflecting

 I wrote the first entry in this blog in 2012. It seems like a lifetime ago, so much has changed since then. 
Acquired deafblindness is unique and the challenges it creates are unique. It causes a sense of almost unbearable isolation and detachment from the rest of the world. The best description I can think of is to imagine you woke up to find your eyes sewed shut and your ears completely blocked, preventing even the loudest sound from penetrating the silence. It's mental emotional and physical torture and a form of dehumanisation in the sense of total lack of public unawareness which genuinely made life intolerable. Even close family didn't know how to interact.
To be permanently locked inside your own head unaware if anyone can hear you. Or, if your voice is working and distinguishable. The inability to see anything or distinguish between night and day. Blindness isn't simply darkness, it's sheer blackness or it can be the total opposite, dazzling white so bright it's like looking directly into the sun and it's painful. 

I tried so hard to remain positive but didn't always succeed. To remain positive, we need people around us willing to interact and find alternative communication methods. Deafblind Alphabet is an incredibly simplistic method of communication that works by signing words letter by letter and onto hand. I have a wonderful family whom I know love me dearly. 

Regretfully none of my genuinely kind caring children learn the manual they'll never know how painful that was. I was told later that it's extremely common for those closest to deafblind people to be the ones less likely to learn alternative communication. I understand it's got a lot to do with acceptance. When you have someone close who suddenly loses both senses, it's hard to accept and just to even for fully sensed people. I gather it's a coping mechanism - It's a form of self-denial to block out the severity of dual sensory loss in families.
On the other hand, children are keen and interested in learning new ways of communication. My grandchildren, particularly the primary school ones., loved to practice spelling words onto my hand with hilarious results. 

I'm one of the lucky ones with two cochlear implants. They really did give me my life back even when I still couldn't see.

 

I love giving talks about sensory loss. Educating children and adults alike.  The day they "switched the Cochlear's on" (Videos that show recipients having the cochlear placed onto their head and suddenly hearing isn't quite accurate). Adults sit through an hour or more of hearing only beeping, buzzing, ringing hooting and trilling to get the right tone levels. Anyone who's experienced tinnitus can imagine what all those tones do to the head. 

I'll never forget the day we drove home from the hospital after the Cochlear's were switched on. The roar of the car engine forced me to take both my marvels of technology off my head!

It was raining heavily when we arrived home. As I approached the front door, I stood completely still. Overwhelmed and transfixed by the magical sound of rain hitting the ground and making splattering sounds as they landed in a puddle.

Truly the simplest things in life truly are the most magical. The things we take for granted and never give a second thought about can be magical. I fell asleep that night still with the Cochlear's on, just listening to the rain as it hit the window.
I woke up that first morning to hear a chorus of birds tweeting, I can't describe my happiness about that. Not long after I heard the cawing of seagulls frightening the little birds away. I head the seagulls later that day too. I heard them the next morning, and the next.. and the next.. I learned to avoid putting the Cochlear's on as soon as I got up. The joys of hearing!!