Years ago I blamed deafness rather than accept responsibility for it. Many times I said, “You get the phone. I can’t hear” or “Go without me to that meeting! I can’t hear.” Substitute can’t for I won’t take responsibility and it paints a truer picture of what was going on. I was soaking in a tub of self-pity, playing the sick role, and making all sorts of secondary gains that encouraged me to stay the victim of late-deafness. “I can’t hear” really meant I won’t obtain a phone that would allow me to communicate and I won’t assert my rights and ask for the communication assistance to attend a meeting. I chose not to choose. Instead of creating my destiny I was creating a problem. And that is exactly how my loved one’s referred to my hearing: “Lois has a hearing problem.”
I sure did. The problem was I was too much into blaming deafness. Somehow I misunderstood that not being responsible for becoming deaf meant that I was not responsible for how I responded to deafness. I found it more comfortable to hide feelings behind a language of avoidance rather than use a language of self-awareness. I did not want to recognize that I can’t really meant that I won’t.
So I chose to use words that kept me a victim. Like in the statement “I want to work but I can’t communicate in the business world.” The use of “but” denied the power I had to tap into my inner strength to find the ways to develop new abilities so that I will be able to work. “But” language set me up for failure before I even gave it a try.
I try to be very aware of the words I use and whether they have a positive or negative effect on my growth. If someone now said “Lois has a hearing problem” the hair on the back of my neck would stand up! A far cry from before when my shoulders would sag and I would shake my head in agreement “Yep, I sure do”. But not now! I have taken responsibility for late-deafness and I am proud of that.
After giving a presentation on late-deafness, one woman who has a progressive hearing loss approached me to comment on my acceptance of deafness. She said “You really have your act together, I wish I did too.”
Although it was a nice compliment to receive, it kind of troubles me that another person is thinking “what’s wrong with me?” It is hard enough to accept late-deafness without adding to the pain by making comparisons on where another person is in the journey to accept deafness.
I don’t think this woman would have thought this about me years ago if she could have seen my daily routine that lasted for about three years. I would wake up at 7AM, make breakfast, pack school lunches, drive the kids to school, come home, do an hour of housework, and then go back to bed until it was time to pick the kids up at the end of their school day. Doesn’t sound like a person who has her act together unless the name of the play is “How to Sleep Your Life Away.” Depression manifests itself in many ways. For me it was to sleep. It was easier to sleep than to face reality. I never intended to stay in bed all day. I always tried to get out of bed but found my body so heavy that I just did not have the strength to move.
I believe that we, who find ourselves deafened, are all on the journey to accept late-deafness and we are all at different stages. I continue to struggle with late-deafened issues at least once a week. Whereas before it was one continuous struggle day in day out, now a new hurt will last a few hours before I am able to pick myself up and bounce back. What usually brings me out of the pain and able to get back on track is a reminder of hard it was for me to regain my self-esteem. I ask myself “ Do I really want to give permission for this new hurt to damage the esteem that I carefully put back together piece by piece?” The answer is always no, because I never ever want to lose again something that I fought to regain and therefore is so precious to me.
The memory I shared with you still has the power to reduce me to tears, probably because I choose to hang on to the memory and give it power. It motivates me to live and to enjoy every precious moment.
(A reprint of an article I wrote 20 years ago, when I was the founding President of ALDA-Suncoast of Florida, a support group for people who have become deaf. The article appeared in the newsletter, ALDA-Sun. At the time, I was going back to school to change professions from being a foreign language teacher to becoming a mental health counselor.)