Yesterday marked a pretty big milestone for my deafness. I’ve been “legally deaf” since April. The audiologists don’t really know what caused it, but they labeled it as Sudden Hearing Loss. For a month, a hearing aid worked a bit and I could understand maybe 50% of what people said. Then I became unable to understand speech at all. But I could still hear voices, hear myself, hear movies in the theater thanks to the huge speakers.
As of yesterday, the only things I can hear are the rumbling of cars and the deepest bass in music. I knew this time would come, but I can’t quite get my head around not even being able to hear my own voice or coughing. It’s not completely silent. Instead, there’s this deafening (excuse the pun) ringing in both my ears, changing its screeching tone every few minutes. The ringing (called tinnitus) is almost as bad as the deafness. But at the same time, it’s comforting to hear something.
Sometimes, I just want to scream, “Why me?!? I already have this disease to deal with, now you stack on deafness?” And honestly, I have moaned and whined those words in the most frustrating, self-pitying parts of the past few months. “Why couldn’t the deafness strike after my lung transplant? I need the social support the most right now.” “Why couldn’t it strike long before? When I was still physically strong?” It’s all just so… unfortunate.
But if you’ve kept up with my blog until now, you know I don’t accept the negative perspective. When I really think about it, I’m incredibly fortunate in many ways.
- Maybe “strike” isn’t the right word.
Sudden Hearing Loss is something that can be, well, sudden. While I definitely felt the hearing loss overnight in April, at least I didn’t lose it all at once. The hearing left bit by bit, allowing me to adjust along with it. Thanks to hearing aids, I was able to “set my affairs in order” and enjoy what I knew would be my last full spoken conversations with people for awhile. I also knew I would have to cherish and memorize the sounds I love most before they were lost to me: music, Kristina’s voice, birds chirping, and cooking noises. I had time. If it all happened overnight, I don’t think I would have adjusted as well.
- Y’all are too kind!
I have the best support group I could ask for. I have a girlfriend who loves and likes me no matter the intensity of my disabilities, parents who are so sacrificial and perfect, a church family that understands and genuinely cares, and friends who help me laugh at my situation. I may be a bit of a hermit these days, but I’m glad my days of extroversion resulted in so many beautiful relationships!
- Thank goodness I live in modern times.
There’s a lot of work to be done for disability accessibility in society, but a lot of work has already been done. It’s so great to have speech-to-text devices, texting, and closed captioning. Does anything more need to be said? There’s another cool piece of technology, which brings me to:
- A possibility for a “heard” future.
There are these really cool things called cochlear implants, which kinda allow sound to bypass the ears and, shamwow, let deaf people hear. I was actually supposed to get cochlear implants back in June, but the progression of my disease made surgery too risky to consider. However, a CF doctor in San Francisco that’s on my transplant team floated the idea of getting the implants at the same time as my lung transplant. Wouldn’t that be a life-changing day? It just so happens that his daughter has cochlear implants, so he’s rooting for me.
All this is not to say that it’s easy. I don’t want to deceive people into thinking deafness is easy, because that would be so disrespectful to the many others that are suffering from it. But it would be so much harder if I was deaf in 1850 BC or didn’t have support groups or the complete deafness struck overnight. Knowing that I might have my hearing restored through cochlear implants makes me think, “Hey, maybe this is a time that I need to:
- Learn to focus on what people are saying and not just think about what I’m going to say next. So, ironically, learn to listen.
- Learn patience. Being deaf is boring, and I want the implants now!
- Learn to be more observant. If the ears don’t work, the eyes do double work!
- Time to crack open a book.
Anywho. Thursday is my last doctor appointment at Tripler. Should be bittersweet. Until next time! And don’t forget to be extra grateful for your hearing today (: