A taste of disability
Allow me to tell you about the time I lost my hearing and came face-to-face with my own privilege.
The story below is annoyingly long. Like, over 4,000 words long. It’s okay if you don’t read it. I’m going to post it with a voiceover, if you’d like to listen to it like an audiobook. It’s okay if you don’t want to do that either.
This story has absolutely nothing to do with sports. It is just a story about a medical situation that I had about 6 months ago that changed me a bit as a person. I’m mostly writing it down so I don’t forget about it. Read (or listen) if you’re interested.
It started around Mother's Day with a scratchy throat in the morning, aka post-nasal drip. I had no other symptoms, which I was thankful for, because I had a very busy couple of weeks coming up.
On May 17th, my wife and I packed up our daughter and headed to the airport. We were going back to Dallas, where my wife lived when we started dating (for the 2nd time, it’s a long story). We both have lots of friends there, the result of our long-distance relationship and the half-dozen or so times we’ve visited since.
This time, we were going to celebrate our friend Kirk’s 40th birthday. He was throwing a big party that happened to coincide with a Dallas Mavericks playoff game, which suited us just fine. During our trip, we found time to visit a good amount of our other friends in Dallas, even tapping some of them for babysitting duty while we loudly told stories in dive bars until the early morning hours with others. It was a great trip.
Another reason we decided to jump at the opportunity to celebrate Kirk’s birthday with him? My wife had a work event in Dallas that started the Monday after. So, once the weekend was over, she stayed to do work stuff while I flew (with the kid) back to San Diego.
If you thought that was what I meant by “I had a busy couple of weeks coming up,” hold on. It’s about to get wild.
I returned to San Diego a couple days after my mother’s “70th birthday week” had started. She doesn’t reside here anymore, but she loves the city all the same. When I asked her what she wanted for her 70th birthday, she said she wanted to spend a week in San Diego surrounded by her family. She flew in from Texas, her sister from New York, my sister from northern California and my brother from North Carolina…with many spouses and children included.
Like I said, I got there late. Everyone else flew in on Saturday and I didn’t get home until Sunday night. On Monday, I invited everyone to my house for a pool party and some smoked tri-tip. Fun was had! On Tuesday, my wife came home and we all got together at a restaurant for dinner. By the end of that meal, I remember feeling like I might be getting a cold.
Just trying to help
The next day, I woke up and jumped on another plane for a connecting flight to Orlando. This would make for four plane trips in six days.
I missed the last couple of days of my mother’s birthday week, so you know I had a good reason.
My uncle Bill, who I’ve been close with my whole life, needed some help. His wife of 40ish years passed away almost six years ago now, her heart gave out after several rounds of chemotherapy.
When that happened, Bill opened up his home to my father, who has Parkinson’s Disease and was struggling with drug addiction at the time. My father still lives with him to this day.
Bill eventually found love again and remarried a gem of a woman. Things were going well for him, but it was in the spring that his wife developed what seemed to be the flu…and wouldn’t go away. When she finally saw a doctor, the news was horrifying in a number of ways.
She had congestive heart failure, coincidentally the result of chemotherapy that she went through earlier in her life. They didn’t know how much longer her heart would last, but it definitely wasn’t going to be long. I’ll spare you most of the details but sum it up by saying that her medical situation had taken over Bill’s life and thoughts.
I called him and asked if he needed help. He tried to tell me he was fine, but I could hear in his voice that he wasn’t. I told him that I would come out and take care of my dad, so that Bill could focus on his wife.
“That would be good. It would be really nice to have someone around to help and to talk to,” was what he said. I remember it because it rang in my ears for weeks after he said it.
I flew out Wednesday morning.
The day it started
Because Bill couldn’t be away from his wife, and it made more sense for her to be at home (with an IV drip in her arm, trying to keep her heart alive), I offered to take an Uber for the 90-minute ride from the airport to his condo and he gladly accepted. It felt a little weird to walk past the spot where he’s normally waiting for me and see nobody standing there.
It wasn’t until I got in the Uber and we started going that I realized that my right ear had never “popped” after the plane landed. I spent about 40 minutes trying everything I could, in the back seat of the Uber, to get it to pop before giving up. I figured it would happen eventually. This felt like a thing that had happened to me before.
When I got to Bill’s, it was night time. I hate flying east. I told everyone that my right ear hadn’t yet popped. Nobody seemed concerned. There were some suggestions on ways to wiggle my ear or drops to put in that would clear that up, but everyone agreed that it would likely go away while I slept.
The next morning, I woke up and…the left ear was now stuffed up? The pressure was really uncomfortable and my hearing out of that ear was obviously muffled.
After explaining the situation to Bill over a cup of coffee, I proclaimed “Good thing I don’t need perfect hearing to be helpful! Tell me what I can take off your plate today.”
He was taking his wife back to the hospital that day for some tests and a conversation with the cardiologist. I offered to cook dinner and take care of my dad. Bill called me from the hospital a few hours later to ask me to run to the pharmacy and pick up a prescription that his wife would need as soon as she got home, so I did.
Walls start closing in
That night, Bill and I sat on his balcony drinking white Russians and talking about music. I made him sit on the side of my “good ear”. We wondered when the other one was going to pop.
On Friday, things got worse. I woke up with both ears “stuffed up”, kinda like when you get water in your ears. Bill told me to put hydrogen peroxide in them and then lay down, the theory being that it would break up whatever was clogging my ear and then gravity would get the pieces out. I assured him that I keep my earwax in check but tried it anyway. It didn’t work.
If you’ve ever heard of “the fishbowl effect”, it felt kinda like that. Because everything sounded muffled and far away, I felt a bit like I was watching my life on TV rather than living it. Reality didn’t feel real. And I kept having to make people repeat themselves and speak louder, although that’s not rare in Florida. I joked about fitting in with the other seniors in the building.
Bill took his wife back to the hospital (also 90 minutes away, right by the airport) because she woke up feeling sickly and they discovered that she was severely dehydrated. They admitted her and said she’d stay for a few days. They needed to keep a close eye on her, her heart was getting very weak.
I took myself to urgent care, which offered no real answers. It was pretty obvious that the main cause was post-nasal drip plus a bunch of air travel in a short period of time. After the doctor looked in my ears and said “I don’t see any sign of infection”, he gave me a shot of steroids, a prescription for antibiotics (pharmacy visit #2!) and preached patience.
When Bill came home alone, we ate the leftovers from the night before and I showed him how to make the recipe. He’s made it about a dozen times since, it’s a big hit.
We talked about what we would do to take our mind off of things on Saturday. Maybe we’d go to the beach. Or that bar that makes the incredible piña coladas. Maybe we’d go get those oysters with the Italian seasoning that Bill likes so much.
About my father
It’s probably worth mentioning that I don’t have a very good relationship with my father. Years ago, I actually told him that he had given up his rights as a father and that there was no longer that connection between us. I let him be a grandfather to my kid but, otherwise, we don’t talk much at all.
My dad’s Parkinson’s Disease is likely the result of decades of hard drug use, so you probably don’t need to feel that bad for him. He was diagnosed when he was 40 years old and told that he wouldn’t make it to 50. At that point, he decided to live like he was dying…in the bad way. He’s currently 71.
One of the biggest side effects of his Parkinson’s is that he has trouble talking. Not only does he mumble, but he barely has any power behind his words. It’s a mix of mumbling and whispering.
People that spend a lot of time around him learn to translate, the way that parents can pick up on what their kid’s babbling means at a certain point, but he’s not easy to understand in the best of circumstances. With my ears as they were, there was almost zero ability for us to communicate with one another. I mentioned this to him at one point and could see him laugh, but I heard nothing.
When things got painful
Saturday was not the fun day that we had talked about. We didn’t go the beach. We didn’t go get piña coladas. We did not have oysters.
I woke up with my hearing greatly diminished from the day before and the pressure turned up to the point where my head felt like it was in a vice. I decided to visit a different urgent care, hoping for a second opinion.
This time, I was given a diagnosis. A bilateral middle ear infection. When I mentioned that the day before I was told that there was no infection, this doctor clarified. “They probably just looked in the ear canals. That’s where most ear infections happen. Yours is way down in the middle ear, which makes it harder to see and harder to deal with.”
I hoped that a diagnosis would lead to more effective treatment options, but not really. I was given another prescription, for even more steroids, and told to take it easy. My flight home wasn’t scheduled until Tuesday. I just had to be better by then.
I went back to Bill’s condo and spent the rest of the day reading in bed. Laying down in a cool room was when the pressure in my head felt the best. Every time I got up, I wanted to immediately lay back down.
Bill continued to check on me. And he took over care of my dad. He texted with his wife, who was sending him updates from the hospital.
At some point, I saw the incredible pain in his face. I got up and gave him a hug. He said “Everyone who comes around me gets sick. I feel cursed,” loud enough for me to hear it. I felt awful.
I had made this trip with the goal of helping him out, of making his life easier and maybe providing him with someone to talk to, and here I was making things harder and unable to hear most of what he was saying.
Bill made dinner that night, pasta with meatballs. Nobody talked while we ate, each of us for different reasons. I couldn’t hear anything below a yell, my dad is incapable of yelling and hard to understand anyway, and Bill was mired in the depression of the situation.
But I had a diagnosis now and was taking as much medicine as I could. It would get better soon, I told myself.
When things got scary
I woke up deaf on Sunday. I could hear vibrations, like if I drummed my fingers on my skull, but nothing else. I wished that I had taken those ASL lessons that I had been meaning to, not that it would’ve helped much.
The pressure and pain in my head was almost unbearable. I texted Bill from across the room and I remember the letters on the screen moving around like they sometimes do when I have a migraine. Reading became difficult.
I made some magic brownies but didn’t eat one. I didn’t want to stress my body out in any way, I wanted to get healthy.
The day felt like it lasted 40 hours but I couldn’t tell you much of what I did outside of lay around and read. Bill visited his wife in the hospital, said she might come home on Monday.
Bill encouraged me to go to the ER. I told him I had seen 2 doctors in 2 days, it felt ridiculous to go 3 for 3. I had the medicine, I just needed to wait for it to kick in.
I took a shower that freaked me out. I can’t really explain how jarring it is to hear the water vibrating against your skull but not hear it hit the ground.
My relationship with my wife and daughter was getting strained without phone calls and FaceTimes. I spiraled. I wondered if I would ever hear their voices again. I wondered if I would be deaf for the rest of my life. I cried.
I thought about calling my therapist for a second and then realized that I wouldn’t be able to hear anything he said. I cried some more.
I talked to a God that I don’t even believe in because there was nothing better to do. I begged for help. I begged for forgiveness. I got neither.
I watched my beloved Dallas Mavericks take apart the Minnesota Timberwolves in the Western Conference Playoffs and had no way to celebrate with anyone outside of texts with my wife. It felt hollow.
When I got stuck
Monday was Memorial Day. Each day was worse than the one before it and I had a flight home scheduled for Tuesday, not to mention I needed to get back to work.
I found an ER that was open on the holiday and went there. Again, I’m not sure I can stress how terrifying a simple thing like driving had become without being able to hear anything. I worried every second that someone might be honking at me and I wasn’t aware, or maybe that a cop was chasing me with sirens and wondering why I wasn’t stopping.
At the ER, I encountered a stern female doctor who was not there to comfort me. She recommended a CT scan to make sure there “wasn’t anything we should be worried about” going on in my head. She did not appreciate that I kept asking her to speak louder or write things down.
The results came back and….still a bilateral middle ear infection. Just one that wasn’t getting any better.
She stressed that I could not get on a plane like this. My ear drums would rupture, it would be incredibly painful and life-altering.
She recommended a few additional medications (pharmacy trip #3) and patience. The dresser in Bill’s guest room was running out of space for new bottles.
I scheduled an Uber to pick me up at 5am on Tuesday morning, just in case my ears popped while I was sleeping. When my alarm went off, I cancelled the Uber and called the airline to reschedule to a flight the next day. I did the same thing on Wednesday morning.
For a while, my wife and I discussed the possibility of me renting a car and driving back home. It would take more time, and more money, but my ear drums wouldn’t rupture. The plan fell apart when I realized just how difficult it would be to purchase food or rent a hotel room without being able to hear anybody.
When I felt disabled
Not being able to hear anyone or anything is dangerous. Not being able to communicate is lonely. Really lonely. I spent a lot of this time just venting about my biggest fears in texts to my wife.
But the thing that will stick with me forever was how different it felt to be in public, around strangers, when I couldn’t hear them.
My uncle sent me a text on Tuesday, telling me that his wife was coming home from the hospital but needed yet another prescription from the pharmacy (pharmacy trip #4!). He asked if I could pick it up. I sent back a joke, something like “Sure thing! I don’t need ears for that!”
I walked up to the pharmacist and said “I’m picking up a prescription for (Bill’s wife). Her birthdate is (whatever it was, I don’t remember).” Then I saw her mouth move while she looked right at me. She was asking me a question.
“I’m sorry, I can’t hear you.”
I saw her mouth move again, this time she was obviously saying it louder. I heard nothing. The only sounds I could hear was the vibration of my own voice when I talked, and I hated that feeling.
“I’m so sorry. Is it possible for you write it down?”
She wrote down “Address?” and I rattled off the address of Bill’s condo and hoped there were no more questions. I felt clammy and nervous. Not only was the pharmacist, who had seen me at least two other times, giving me weird looks….so were the other customers.
I am young-ish, as far as losing your hearing is concerned. I don’t know ASL. I don’t have any of those business cards that start with “I am deaf.” I had to rely on the patience and understanding of absolute strangers. It was terrifying, but I eventually got the prescription. I had helped, in some small way.
The next day, Bill and his wife were back at the hospital, talking with her cardiologist again. He sent me a text that said a special medication was being delivered. Someone needed to go downstairs and meet the delivery driver and sign for it, and my dad’s balance probably prevents him from helping.
“No problem,” I texted back.
I went downstairs. There was a delivery driver. I saw her mouth move. I said back Bill’s wife’s name and she nodded, although I could tell she was confused. I hadn’t answered the question the appropriate way but I had shown her she was talking to the right person, at least.
She handed me a clipboard to sign, which I did, and then handed me the package. I saw her mouth move again and I replied with “Thank you so much, have a nice day.”
She looked annoyed. She tried asking her question again, this time pointing at the front and back gates of the parking lot.
I managed to mutter “I have no idea. I’m so sorry,” before briskly walking back into the building and into the elevator.
I wondered if I was going to lose my job. You can’t be much of a podcast producer and editor if you can’t hear what’s being said. My manager was trying to be patient but it was obvious I was running out of time.
I hated this. I was going to grow to hate people this way. I was going to isolate myself from the world if things didn’t get any better. I felt so bad for people that have to deal with this regularly.
A thing you may not know about me is that I’ve been married twice. The first one ended amicably, we’re still friends, and her parents are both blind. But they’re also the type of blind people who will tell you that it never stopped them from doing the things they wanted to do and they meant it. I never truly understood the bravery and strength in their actions until I lost one of my senses.
Crying happy tears
I spent a lot of Wednesday doing online research and watching videos of facial exercises and stretches that are meant to “open up the ears”. I did them so much that the lobes of my ears bruised.
But on Wednesday night, one of my ears popped. Kind of. I assumed that when they popped, they’d come all the way back. This one popped and I went from 100% pressure and 0% hearing to 90% pressure and 10% hearing in that ear.
Still, I wasn’t deaf anymore! It was the first time that I remember crying happy tears. It felt like laughing and crying at the same time and it was very confusing.
The medicine was working. Progress was being made. I wasn’t going to have to cancel my Uber and reschedule my flight for the third day in a row, I could go home. I would see my family and hear their voices. I could have conversations with complete strangers.
The journey begins
The next morning, I got up at 5am and hopped into the Uber. I spent the entire 90 minute car ride talking with the driver, and I’m usually the guy who has the “quiet car” setting turned on. I got most of his life story.
In the airport, I was beaming. Nothing will jazz you up more than regaining a lost sense and going home. I was telling jokes with TSA agents and ordering coffee without issue. My fears were melting away.
And then, just as quickly as it happened the night before, my one “popped” ear went backwards. The pressure came back and the hearing disappeared. I was deaf again. The vice around my head had returned.
What the hell was I to do? I was sitting at my gate. Boarding was in 20 minutes. Reschedule the flight again? Take another 90 minute Uber back to Bill’s to wait it out?
Fuck it. If I wasn’t supposed to have un-ruptured ear drums, I wasn’t supposed to have un-ruptured ear drums. My wife was still sleeping in California, but I sent her a text letting her know that I might be fucking up my hearing for good but that I was getting on the plane.
I had read enough to know that ear drums rupture during take off or landing. I would probably know right away if it was going to happen.
I put my earbuds in (bad idea) and turned the volume as high as it would go (another bad idea). I could almost hear the music but it sounded like a whisper in the wind. I tried to focus on it and ignore everything else. I gripped the arm rest hard and waited for the extreme pain that I had read about.
Luckily, it never came. When they turned off the seatbelt sign, I felt a rush of relief run through my body. Then I looked down and realized I had sweated through my shirt. I thought about apologizing to the woman next to me and realized that I wouldn’t be able to hear any sort of reply from her.
I landed in Phoenix, took off again, and landed in San Diego without issue. I sent a text to my wife to let her know when I was back in my car and driving home.
She called me and I picked up laughing. I said, “What do you think you’re accomplishing by calling a deaf person?” But I was actually able to hear her, a tiny bit, with the car’s audio volume turned up to 100. It was a joy to hear her voice.
The journey continues
The next day, I went to my local urgent care. I explained what had happened. The doctor I saw was dumbfounded.
“I have been doing this for 30 years and I had literally never heard of this happening until yesterday. Some guy walked in with the exact same issue. I had to double-check your chart because I assumed it had gotten mixed up with his.”
The doctor’s recommendation was the same as the doctors in Florida. Rest, patience and a handful of over-the-counter nasal decongestants. I went to an ENT who explained that my ear canals are uniquely-shaped and said that’s probably what led to it.
I did my job on autopilot for a few days or weeks before I felt confident in my ability to actually hear anything. It took about two months. Both of my ears still make a *click* sound every time I swallow, and my ears go back to being all stuffed up every time I catch a cold. It sucks but it’s not the end of the world.
And it has provided me with a pretty unique perspective. Instead of complaining about my lot in life, I think about the people who have to make it through this world without sight or sound. I think about the way they’re treated by strangers, some of whom patient enough to help and some not. I think about all of the dangers they have to worry about that I don’t.
Then I turn on some music and I try my best to appreciate the ability to hear it.