I don’t spend a lot of time on social media nowadays sharing my life, but I do want to share something intimate today. The fact is, not many people know this about me, not even some of my closest friends. I deliberately hid this part of myself out of shame. Childhood was difficult, pretending like I didn’t have this problem, and I felt so lost and alone, incapable of fully communicating this pain I carried. I was bullied and misunderstood because of something I couldn’t control, though I accepted the blame as if I had control over this problem. You see, this problem was and is my invisible disability.

Today I’m challenging myself and anyone else to be wild and free unapologetically!

I was born with a hearing impairment in both of my ears. There isn’t anything big about having this disability, but I never learned it was okay from a young age. Starting in elementary school, I was labeled as having a learning disability, though I had audiology tests indicating I was actually hard of hearing. I needed hearing aids to assist me, but sadly they weren’t accessible then because of the cost. (Hearing aids were expensive, and have only become more expensive over time, with costs rising much faster than the consumer price index.) Instead of accepting myself at the age of five and getting hearing aids, and letting my disability be known in early elementary school, I came to feel ashamed and like a social outcast, and I asked, “God, why was I not born normal without defects?”

What is interesting to me is there was another girl in my 4th grade class named Tara who had a hearing device and she was fully open about it. In fact, our teacher Mrs. Bowers wore a big ole device around her neck that transmitted her voice to Tara’s hearing aids. I thought Tara was so brave to not be ashamed and wondered why I couldn’t be like her. Unfortunately, I was subject to teachers yelling at me if I misheard or didn’t follow instructions but no one ever acknowledged I was hard of hearing. It was hard to feel safe and trusting of people due to similar things happening throughout my life.

(I also delay letting people get to know me, due to not feeling safe sharing my invisible disability, since some people are inconsiderate and insensitive when you share with them. Instead, I slowly unfold my layers, revealing my true self. My husband after six years is still discovering new sides of me. I am very cautious and guarded.)

This shame continued throughout grade school, college, and my early professional years until I finally owned my invisible disability and stopped hiding it. It wasn’t until I met my future husband that I genuinely felt anyone really understood how my hearing affected me. I recall the first time I told him that I had this hearing impairment. I was in Alta Plaza Park in Pacific Heights, San Francisco. Right before I told him, he was honest with me and said in a polite way that he sometimes said things and I didn’t respond, or my response was off. I almost started crying and realized I had to tell him that it was because I didn’t hear well. He was immediately understanding and accepted me. It helped me feel connected to him because he was so gentle and understanding, and I never experienced anything like that when I told people about my hearing previously. It was so genuine and kind and he didn’t run away. It helped us build up trust with one another.

I purchased my first pair of hearing aids for a whopping $7,000, and this completely changed my life. My hearing aids are sophisticatedly programmed for my hearing. When you put on hearing aids for the first time, unlike glasses, it takes time for them to stimulate the brain to create new neural pathways to translate new sounds. I had to be patient with myself for the first three-plus months as I adjusted to hearing and understanding more sounds and speech, and I still have to be patient in novel environments. I pick up 99% of what my husband says, for instance, because I cognitively adapted to the tone and pitch of his voice, but when I’m around new people, it takes me some time to understand what they are saying if their pitch and tone are different from what I am used to hearing. If you are new to using hearing aids, be patient, since it takes time to neurologically adapt. As you increase your ability to decipher sound, the hearing aids strengthen your brain and keep you cognitively sharp.

My programmable hearing aids make certain sounds that I don’t hear clearly higher in pitch so I can pick them up, and they cancel out white noise to assist my hearing. Sadly, most hearing aids don’t do that; they just amplify everything, even the white noise. Most of all, the ones bought outside of an audiologist’s office are like this, and even the cheaper devices bought at an audiologist’s office aren’t programmable. I have tried them and they’re not as helpful for people like me. Programmable hearing aids have been a life changer. I can now hear the variety, crispness, and intensity of birds chirping and insects buzzing outside my window, and the ecstatic richness of sound around me. I am thrilled and blessed that I can now hear more of the small details I have been missing my whole life! 

Although I have been very successful in academia and my professional life, I have struggled with really connecting with people socially, because a lot of the sounds and spoken language that I hear has been lost in translation. For me, my hearing impairment is not simply not hearing clearly enough, it is combined with a few seconds delay in comprehension, linked to my neurocognitive processing of sound. This delay causes me to misunderstand many jokes in group settings, since I’m always a few seconds behind, catching up to process what I’m hearing. I have also developed the ability to read lips, which further helps me distinguish between different sounds, but putting together a sound and the movement of the speaker’s lips  adds to the processing delay.

However, this lip reading skill doesn’t help me much in conversations with large groups of people, with or without masks, because I can never cue into a pause in conversation in time to actively jump in to give my input. I am only able to participate by intensely listening, but after a while I don’t feel part of the conversation if the people I am around are not good at being inclusive and engaging with the quiet person in the circle. This is why I strive to draw out people in conversation, because I know how it feels to be left out. I don’t choose to be in those environments anymore because they’re pretty toxic for me.  

My comprehension of speech is even lower with artificial sounds, transmitted through speakers, and I lose so much information. I can’t watch TV without captions because it is like watching a silent film since I miss much of the dialogue. This pandemic has been crazy for me because I’m losing even more communication, as I can’t read lips and pair that visual information with sounds that I don’t fully hear.

Sadly, people can make us feel ashamed or hurt because of how they respond or treat us in the workplace or among friends and family. For instance, sharing this with insensitive people who will say stupid stuff like, “oh, you listened to loud music,” and I would kindly say, “I was born this way.” Sharing your story is your power and it empowers others who may be struggling to overcome similar things. The reason I share with you is so you will know how to best communicate with me, in a quiet setting, in a small group or one-on-one. I like to talk about things that matter to the heart, mind, and body. I lose parts of the conversation and rarely understand jokes in group settings, since I am more anxious and have delayed processing, but I will nod and smile as if I do understand, and you will not get the best quality time with me.

There has been a lot of speculation and pretending in life to match people’s expressions and guess what they are saying, and a lot of miscommunication. One time in high school, I had a conversation with an upperclassman, who was nice but had a ghost whisper voice! The next time I encountered him in the hallway, I thought I heard him calling my name, but I didn’t want to embarrass myself by asking if he was calling me. Instead, I chose to ignore what I thought I heard, to appear normal, and I know I came across as being very closed off and probably rude.

I didn’t always see my hearing impairment as a blessing; I always saw it as my curse. But two years ago a gentleman in Penn Station who had a very calm and pleasant demeanor saw me and my husband and thought it was so special that we were an interracial couple in a crowded space embracing each other, and came over to say how beautiful it was. At first sight, I would have never known that the man, Masie, was in a state of homelessness. Afterward, I ended up talking with Masie about life as my husband went to work, and my hearing came up in conversation and I told him it was my curse. And he said no, you don’t know yet, but it is your greatest blessing. I was left very baffled and I pondered on this for the next two years. It took until now for me to really understand what he meant. Masie was like a heavenly angel in disguise who helped me shake off the rest of the guilt and shame that I had about having been born this way. I was so concerned with wanting to appear normal and it was so hard to share this with anyone. I want to thank all of my friends that I have shared this with in the past, because you helped me in many ways, taking the time to communicate with me one-on-one and get to know me. Even though we may not talk all the time anymore, you know who you are.

My hearing impairment truly has been my greatest blessing. Don’t feel bad for me, because it has made me very acute when it comes to body language, really listening to people, and sensing and caring how others feel around me. I always find myself building up the people who take the time to know and understand me, and I do the same thing with strangers. I desire to make people feel included and important because we all are unique in our own ways. There will never be anyone just like you, so please don’t feel ashamed like I once was about a disability, invisible or visible, or anything else about yourself. I am glad I took the time today to share, since being yourself is wild and freeing!