My Self-Acceptance

It’s July 2011, I was lying on my bed at my mother’s apartment pondering what will my life become. My mother just informed me that she scheduled my Cochlear Implant (CI) surgery appointment with Mayo clinic in Rochester, MN. In two weeks, we would be driving an hour and a half down to Rochester for the operation and it was a matter of time for me to make a life changing decision. However, something was missing. As I lay there wondering what had gotten into me. Why am I not jumping over the moon? I have been traveling around the world for the past six years of my life to seek treatment, to restore my hearing ability.

 It was at this time, that I was able to come to peace with my hearing loss.

Still laying on that bed, questions flooded on my mind. Will the implant help me hear again? Will it cause me any harm? Will it change who I am? Is it worth the risk of possible side effect? But most of all, the most important question that was on my mind was: do I really want this procedure?

Six years before that day back in my native country, I was a normal person like the rest of the people--nobody paid any attention to if I was there or not, but after I suddenly lost my hearing ability, I become the center of the attention. It felt like I suddenly transformed from an invisible person whom no one paid attention to, to a person whom everyone stared at, pointed fingers at, threw stones at, and called names. So yes, I wanted to be hearing again, I wanted to be the invisible person that no one paid attention to, I wanted to be equal of the rest of the people. And most of all, I wanted to feel safe walking on the streets once again.

Aside from the deep depression of feeling helpless and desperate of support and solace, there were many other challenges and barriers that I had to face. Communication was the top challenge; I came from a country of verbal--we send each other verbal messages, give verbal instructions, tell our histories verbally, and our folktales verbally. Because the majority of people in my native country are illiterate due to being pastoralists coupled with almost three decades of civil war that hindered people from education. Therefore, it was impossible for me to communicate by writing, some women had face veils, which made it impossible for me to lipread, others simply turned away and started arranging their small shops, leaving me frustrated and wondering how much this soap bar costs. Although I was fortunate enough to learn how to read and write my native language before I lost my hearing -- still it didn’t help me much. People were not interested in writing for me. Therefore, they talked, talked, and talked. So yes, I wanted to be hearing again; I was tired of being yelled at, kicked out of shops because I couldn’t hear them, and I hated receiving questions like: are you deaf? When, surely, I was deaf.

Another challenge back in my native country was people’s perspectives toward the disabled women coupled with the lack of human rights. Being both disabled and a woman, I was treated as if I was an incomplete human being, I was told that I was half as worthy as the non-disabled girls of my age. I was not worthy of a good bride’s price if I got married. I was not worthy of a decent man, instead I could only marry an older, already married, poor or disabled man like me. I was not worthy of proper education instead only allowed to take care of the house chores. So yes, I wanted to be equal to my peers, I wanted my life to be successful and to live a happy life. In my native country, peer competition is what motivates most young girls and middle-aged women. And honestly all the young girls are advised to walk in the footsteps of their successful peers.

The most depressive thing back in my native country was my family; my family stopped talking to me. They only spoke to me when they needed to tell me something otherwise I was not worthy their time. My grandmother who raised me turned all the misunderstandings and mis-interpretations that took place into comedic entertainment to tell people. “Can you believe it, I asked her if she added sugar in the tea--she talked about the water truck instead.” It was the most difficulty thing trying to understand what they were saying, and I may have misinterpreted words and phrases; instead of correcting them for me, they made fun of me. They refused to tell me where they were taking me or where I was supposed to go. They only told me to dress up and go with them and I would be following them around like a leash-less puppy. So yes, I wanted to hear again, I wanted to hear what everyone was saying. I hated them laughing at me. I didn’t like following them around all day not knowing what I was going to do or where I was going.

The final challenge that made me want to take the procedure was because of my family’s effort; they spent both their time and their finance to restore my hearing ability. They took me to every good doctor in my native country, they took me to the neighboring countries and they brought me to the States for treatment. And by refusing the surgery meant disappointing them. It was going to crash all their dreams of having a hearing daughter, granddaughter, sister, niece, and aunt. And this is the reason I had to think about it the hard way for hours and days. So yes, I wanted to hear again, to make my family proud of what they have done for me. To make them proud of themselves that they have finally achieved what they thought was best for me.

As you may be curious what a cochlear implant is, a Cochlear Implant (CI) is a surgically implanted neuro-prosthetic device that assists people with severe or profound hearing loss. It bypasses the natural acoustics and replaces them with electric currents. The sound reaches to the brain electrically through the electrode array that is implanted near the brain. The CI electrode is placed inside the cochlea, then the receiver/stimulator is placed inside the head bone, the sound processor with the speech processor is magnetically connected to the receiver usually on left or right side of the skull. They all work together like the normal ears work.

While CI is the widely used implant, it also has many problems and negative aspects including but not limited to nerve damage that could lead to partially paralyzed body, nerve injury that changes your sense of taste, leaks of fluid around the brain, and the electrode array that is implanted inside the cochlea can become rusty and can cause pain. I had a friend in New York who suffers severe pain from it, he has to take medication several times a day. What scared me the most was that the doctor said the electrode array is only replaced when it is broken or becomes rusty but is never removed.

Hours had passed, and I was still laying there thinking. I thought about how hard it was to accept myself for being deaf after all the difficulties I have gone through. I told people I’m deaf but something inside me said. “No, this is just a temporary phase and you’ll be a hearing person again when the time comes,” and this became my soothing mantra. I thought about how hard it was to be deaf in Somalia, but then I realized that I’m not in Somalia anymore, I’m in the United States. I realized that DEAF is the identity that I have been denying for so long and it’s not temporary, it’s permanent. I realized that even with an artificial cochlea, I would still be deaf and that there was no point of denying it anymore. I thought about how much my life had changed since I came to the states. I already started school, summer jobs, made friends, learned technology, met deaf people who were very proud of themselves and I learned two new languages at the same time. The more languages I learned, the less difficult communication became. Therefore, I didn’t need to worry about getting an artificial cochlea at all. This doesn’t mean that I don’t struggle in life anymore; life is full of struggles, challenges and surprises. It means I learned how to live my life the way I want, to ignore negativity, and embrace positivity. I learned how to dream and pursue it. And most of all, I learned that my deafness doesn’t define who I am.

After a week had passed, I wrote a letter to my mother who was sitting in the living room—explaining why I didn’t want the surgery and informed her to cancel the appointment. My family was not happy with my decision at first and we had series of discussion, but they respected my decision. I felt a huge relief because the false hope of regaining my hearing was over for the first time in so many years. My head felt light because the worries and the fear of the CI was over. And so, my focus shifted to moving forward as a proud deaf person.