“Somebody Please Change The Song“ Chapter 💯

Let me start with this... Welcome to Post # 💯!

I have been thinking about writing a celebratory post for the last month. I'd even started a few different posts, but since I wrote my two year anniversary post, it felt repetitive. Since I hope to bring quality posts every week and continue to cover a variety of topics, I will save the milestone celebration for Chapter 200.

What I need now is for someone to please change the song!

As a kid, I woke up once with blood coming out of my right ear. I am not sure why it happened, but it might have been from sinus pressure. As I grew older, my hearing in my right ear was always worse than my left. I was also told that there was some scarring in that ear.  Over the years I have had a few sinus infections and have dealt with seasonal allergies too. It was easy to navigate - I'd blow my nose and take medication. I could cough and even go for a run and sweat it out.

Over the last two years, though, I’ve lost the ability to blow my nose or create any pressure to pop my ears when clogged. I have tried to use natural supplements instead of medications that have a negative effect on my bowels. Local grown honey has been great for fighting off my allergies in the past, but since being on the ventilator with double filtered barriers, I’ve stopped eating honey.

Last year we started using foam earplugs during my showers to prevent water from getting in my ears. We thought of this after I had a hard time getting water out after a shower. I used to do the standard head-banger shake before. You know how it goes, everybody who goes swimming does it. Now with the earplugs, I don’t have water in my ears. Or so I thought...

About four months ago I noticed my ears felt a bit stuffed, like I had water in them. I tried q-tips, leaning over, and even using the tilt of the bed, but nothing worked. I went to my ENT doctor and they told me I had fluid behind my ear drum and gave me nose spray. I’ve been using it for months and still no help. Then slowly, I noticed I was losing my hearing. I knew my right ear was bad, but now my left ear? I started wondering if ALS affects hearing too? Are there tiny muscles in the ears that also die? I lost my voice, can’t smell, am I going to be deaf as well? Can a brother get a break!

Last month it really started getting bad. I suddenly started hearing buzzing and sounds of horns. Not just any horns but an orchestra. I started hearing songs with only horns. No drums, no string instruments, just horns. That is not the worst of it. I must have stayed too long in the Army because I hear only three songs and they are on a 24 hour loop. You would think since I like R&B and Jazz, I would hear Kenny G. or Earth, Wind and Fire, but noooo! All I hear is The National Anthem, Taps, and unknown horn mix. I have one station and it’s stuck on the Arms Forces Network (AFN).

Last month Laura called the VA hospital for an audiology appointment, and like all things VA, we were given a 10 October appointment. Forty more days of AFN on loop... this must be another test from God. I am starting to feel like Job, but also like Job, I too am a God fearing man and will come out the other side richer and stronger. So for now, I will embrace AFN and be grateful the Devil didn’t choose a Country station.

The only hearing tests I've ever taken before was during my Army service. Every year or so I was moved into a little 8 by 10 sound proof room with seven other Soldiers. Inside the room were eight little phone booths with a chair you couldn’t move. The earphones were so tight that you’d hear your heartbeat while holding a push button on a wire to use during the test. Once everyone was seated and the door closed, there were two things you prayed for. You'd pray that you'd pass the test, and also that nobody farted. During the test you were instructed to sit still, remain quiet, and face the wall away from the others. You were to listen carefully for the different tones and hit the button every time you heard it. The first time you test in the Army sets your baseline. If you go under that baseline in the future you may have a hearing loss. Too much of a hearing loss and you could be medically discharged. If you were a “Lifer” like me, then you especially didn’t want to fail. During the test I would really concentrate and push the button. Sometimes I would hit the button so much that the person running the test would speak to me through the headphones saying, “Please only hit the button when you hear the tone.” This would scare the shit out of me and we were still locked in the small room. 🤢

Since this was the only type of hearing test I've ever had, I couldn't help wondering how it would all work, especially when they offered me an earlier appointment last Monday. How will the chair fit? How will I push the button? How will I communicate with them? Laura told me that they understood our situation and would have it covered.

When we arrived, I was moved into a 10 by 10 sound proof room. The room only had a small desk with a computer, a chair and plenty of room for my wheelchair. We then did the first test, only this one was different. The test was to check the reaction of my ear drums. The results indicated that I had no movement at all, and of course I wondered if this was from ALS. The next test was the familiar beep and push test. The Audiologist and I worked out a plan - when I heard a beep, I would move my eyes to the side and she would push the button. The only thing I was worried about now was a false button push and any farting. Who would I blame it on? Maybe I could use the handicap card. Well the plan worked and I didn’t fart, but I failed again. The last test was another beep and push, but instead of placing ear buds in my ear, they tested my ear nerves behind the ears. This was new for me, and surprisingly I did well and was able to hear a lot more of the tones.

After the test concluded and my questions were answered, the Audiologist believed that the loss of hearing and lack of ear drum movement may be a result of fluid in the middle ear. She will send the results to the ENT doctor at my 10 October appointment. She also confirmed that the loss wasn’t caused by a house full of women. In fact, I wasn't ignoring Laura, I just really can't hear her!

Before I left the VA I was given a “Pokettalker 2.0,” which is an amplifier I can use with headphones to hear better. I never knew how much trash talk I was missing. Now I have Spider-Man hearing to go with my ALS Super hero cape. Although my new hearing is great, I still need to get the fluid dealt with before AFN drives me crazy. SOMEBODY PLEASE CHANGE THE SONG!

Love and Blessings

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