A take on my invisible illness.
Sounds like a song from Eminem that I listen to once and a while. The song is called Loose Yourself. The line I am referring to is actually “Snap back to reality, oh there goes gravity”. I believe the song is about his struggles with being accepted as a rap artist. And the intimidation and perseverance he need to get over to preform in front of people. As I am not a rapper, the song has a different meaning for me.
For 47 years I belonged to a hearing community. When I went to work I was accepted because it was a hearing environment. When I went to church I was accepted because it was a hearing environment. When I went out to play pool with my friends I was accepted because it is a hearing environment. When I was with family I was accepted because it is a hearing environment. When I was with my family I was accepted because it was a hearing environment. Even when I was young, broke and living on the street I was still accepted because all around me was a hearing environment. I was accepted because I was hearing.
I have not been ripped from the hearing world. I still work in a hearing world. I still go to church in a hearing world. I still have friends in a hearing world. I still visit my family in a hearing world. I just am not as accepted in the hearing world as I used to be.
As I make my transition to a deaf and dizzy world I find I am sometimes loosing who I was. When I suddenly lost most of my hearing and started to have vertigo episodes my world drastically changed. At the same time people around me knew something was different but I couldn’t properly explain it to them because I did not understand what was going on my self. Now a year and a half later I am still trying to understand it.
I know that others around me can’t see what I go through because it is invisible. When my world spins people do not see it unless I am groveling on the ground trying not to throw up. When I avoid using an escalator, glass elevator or looking over a railing people do not see a balance issue. People don’t understand why I can’t work some days because it is too dangerous for me to drive in my condition that day. People do not see why I have to suddenly take a 20 min break on the side of the road because I am having an ocular migraine and everything is like looking through a stained glass window. People don’t see that I have to be holding onto something when I close my eyes or have a towel on my head because my body does not reference gravity unless I am looking at or feeling a solid object. People cannot see when I am deaf or dizzy.
I know I try to raise awareness by my blog posts or when I share some information on Facebook. For the record I try to hide it all of it from people when I see them in person. I have forced myself to continue with my life a best I can. Possibly trying to hold onto what I once had. My work is now limited and modified to what I can still do. When I loose the last of my hearing or if my balance issues get worse I will no longer be able to work the industry I love. When I go to church I am no longer as involved as I was. I am still a captain of my pool team and play with my friends every week but now I cannot follow there discussions. I actually try to visit my family more these days. Most of the time I look like the one that is just sitting there taking in what is going on but in reality I have no clue what is being talked about.
I am searching for the deaf community in my area. After a year of searching have found some connections. I have taken conversational ASL courses, visit a deaf social when I can and am saving my pennies and looking forward to an ASL camp next summer. I know I am a slow learner and have just started my ASL journey. There is a huge amount to learn as I attempt to be accepted in a deaf world. I also looking forward to exposing friends and family to the wonders that ASL has to offer.
I consider my self a very lucky man. I have never been wealthy but I have been happy most of my life. I look at others and can’t believe what some people have to live with. I have never known war other than second hand descriptions. I have never had life threatening disease. I was never abused. I have seldom ever been persecuted for who I am. I am sure that is one of the best things about living in Canada. Others have sacrificed to let me grow into who I am unencumbered from War, famine, disease etc.
For people that I have not recognized were suffering…I am truly sorry. For people that look at me and don’t see an invisible illness I completely understand.