Invisible

There is a call for submissions for the summer edition of the ALDA (association of late deafened adults) newsletter. The topic is relationship and social setting changes after the onset of deafness.

What is it like becoming deaf? Let us go even further and ask what is it like becoming completely deaf which comm0nly happens to those of us with NF2?

I had to ponder this for a bit and dig down for an analogy as I like to explain things relating the experience to something one can understand. As I sat among a group of hearing people having lively conversation as if I was not even present, the perfect description I could formulate was as if I were invisible. It happens quite often if nobody signs.

When I went off to college I was very excited and viewed life as an opportunity to start with a clean slate. Since it was so much larger than high school and people from all walks of life and from everywhere were being thrown together, the same ol' cliques and caste system was not in place to limit me. Therefore, I approached the world with open arms and grabbed the opportunity to become involved and meet new friends.

Although I did not win, I had the courage to run for vice president of my hall (dormatory) during the first couple weeks of my freshman year! I also rushed a sorority but decided to turn it down after I was accepted as I liked the path I had been pursuing and the relationships I had already began to forge outside of the organization. So my point is that I was somewhat well known and had a voice. People remembered me and knew my name.

While all this was going on, my roommate (who was shy in high school) was not having as good of a time. Although I tried to include my friend, people often referred to us as "Becky and Becky's roommate". I could not understand then how hurtful it was for her and how excluded it made her feel until now.

While my name is not forgotten, the human being I am often is. The oldest among 3 kids, I have always been in the position of role model and leader. Within high school I became one of the "older" members of our youth group which the younger members looked up to. In college I became vice president of my house and the following 2 years resident adviser in a dorm. At 19 years of age, part of being a staff member was to "jump out of one's comfort zone" and provide your opinion. Further, it was my first real experience where I was expected to give as well as receive constructive feedback. From my involvement in these roles, I became part of a leadership program with 49 other like minded students where we exchanged ideas and refined our ability to interact with and lead a team. Following college, I continued along this teamwork route by becoming a supervisor where it was customary to have meetings where everyone's involvement and ideas were shared. After being a supervisor for 4 years, I enrolled in the Master in Teaching program at the University of Washington where we often broke out into focus groups and teaching meant leading students through inquiry projects and lively discussions.

Shortly after graduation, when all my social skills had been perfected and it was very normal to become involved in discussions providing my input, it all shut off. I can't tell you if it was instant as so many things were happening to me beyond deafness that I was propelled into a state of shock. Further, while others had to adjust and remember that I was now deaf and could never interact the same way again, I myself had to endure the exhausting work of learning to become deaf. This involved how to identify myself and inform people, learning a new language and alternative means for communication, building an awareness to things using other senses which for at least a year were stunted due to side effects of the swelling tumor and radiation, and learning how to feel vibrations to replace the hearing that was now gone. As others with NF2 who have recently become deaf following surgery are learning, it is a great deaf of work and really saps the energy.

Because of dealing with all the side effects of my condition were thrown upon my plate at once, it has taken a while to fully grasp and comprehend the hearing loss. For at least a year and a half I was muddling through like a zombie. When various side effects began to subside and I had tackled the process of learning become deaf, then the realization of these changes became clearer.

I don't think people intend to be hurtful just as friends and acquaintences in college did not mean to be toward my roommate. It is a combination of things, some people may be afraid and not know what to say, others will just forget as by hearing me speak and looking at me (I am only 36 years old) I would not appear any different, and then there are those who rather not expend the effort to communicate with me differently and prefer to mingle with the hearing people which is easier and more comfortable. Meanwhile I sit and wait, contemplate the situation, try to focus my mind on something else like noticing my surroundings. When that gets old I try to day dream. After that is exhausted I try to focus mentally on a task which needs to be done. Sometimes I just stare blankly at the moving lips trying to pick up something as if I am following the conversation.

When I had residual hearing I was a pretty good lip reader and functioned as such for several years with the aide of a wireless FM system. Yet, in the complete absence of sound it is a very different story as there is no sound to associate with the movement of the mouth. Lip reading was intended for those who can hear at least something. When one cannot dicipher the sound, watching the formation of speech helps to fill in the gaps. However, even then only 20-30% of speech can be read this way. Because I was born hearing and had heard speech for many years before the onset of my hearing loss, I was familiar with the sound of words and was more successful using speech reading as an aide for a word I could not determine through hearing alone. When you take away the sound, all you see are people moving their mouths with no idea what they are saying.

So after being frustrated at watching their mouths move and falling deeper into hopeless isolation and boredom, I can stand it no longer to the point my skin is crawling. I cannot speak when there is noise or a bunch of people talking as I have no idea what the volume of my voice is compared to the surroundings and I don't know if I am rudely interupting. Restaurants are horrible places to try to evaluate. When I do speak, I find that either the other person cannot hear me because I am talking normally but the atmosphere is loud. Then other times the restaurant may be kind of quiet and my normal volume of speech is too loud so the other person gets embarassed and tells me to lower my volume. Sigh! It is just impossible so I prefer to write or sign.

Back to the situation when the group is chittering away.........Desperate for some involvement, I again focus on their mouths and each person. I try to target someone sitting right next to me or within arms reach. I wait until the person is not speaking or does not necessarily looked engaged in the conversation. Sometimes that is just not an option and everyone is engrossed but I can stand it no longer so I pass the person a n0te letting them know I am here and attempting to get some interaction.

Rarely does anyone who is hearing take the initiative to start a converstation with me in these settings even though my paperpad and pen are sitting on the table in front of everyone. It is as if it is invisible just like I am. I like I am in the movie "Invisible" where the young man who is between life and death is present but nobody sees him. Every once in awhile I have to wonder if I am actually really there or if I am in a coma somewhere but do not realize it. Other times I wonder if this is what it is like to be dead but not able to let go of my physical existence like Patrick Swayze in the movie "Ghost".