Tag: life with disability

How to Shower Wrong: A Tired Person’s Guide

Or Waterproof? Asking for My Hearing Aids.

The unthinkable happened this weekend — I forgot to take my hearing aids off before getting into the shower. First time ever in five years that this has happened to me.

Hearing aids are expensive. These were my first pair, the ones I got when I first lost my hearing, and they were very expensive. Back then, we had great insurance that covered the full cost of a top-of-the-line pair. That was several insurance companies ago.

Ever since then, I’ve dreaded getting them wet or breaking them. They’re my lifeline. Usually, the first thing I do before stepping into the shower is touch my ears to make sure they’re out.

But today, I forgot.

I was tired — I hadn’t been sleeping well for the last couple of nights. The Passenger Prince had to do a 72-hour at-home EEG study, which meant a camera was set up on him at night. The camera had night vision, and that little light kept waking me up. I like complete darkness when I sleep. I thought about crashing in my home office but decided against it for the sake of comfort. Comfort that completely escaped me this weekend.

My Passenger Prince, who on a normal day would enjoy me running out of the shower naked, was not thrilled with my sprint this time. As soon as I noticed my aids still in my ears, I bolted out of the shower to dry them off — dripping water all over the bathroom and the laminate floor in our bathroom.

Maybe tonight I’ll finally sleep.

Navigating Health Challenges: A Journey with the Passenger Prince

The Passenger Prince and the Scissors

My Passenger Prince woke up this morning with a spring in his step and went straight for the scissors — gladly, and with purpose. Such great enthusiasm for scissors hasn’t been seen in our family since he cut the umbilical cord for each of our kids.

The Prince had been tethered to an EEG machine for the last three days on our never-ending quest to figure out what happened to his brain — and why he had a seizure at fifty-nine.

On Friday, we went to get the EEG machine. The technician placed the electrodes all over his head and wrapped it like a mummy. Luckily, it was Halloween, so at least for a day his appearance didn’t draw any strange looks.

The Prince was confined to the house under strict instructions: no showers, no sweating. One day was meant to be an easy “just-watch-TV” kind of day; the next was supposed to “engage his brain.” So, I found some math quizzes online and left them for him. He also started a puzzle that will never be completed and tackled a few brain teasers to keep those neurons firing.

My Passenger Prince is usually on the move, so keeping him confined was no small feat.

Three nights of a camera observing him sleep added to the “fun” — for both of us. He had a hard time sleeping with all the cables, and I had a hard time sleeping with the camera’s night-light mode glowing in the room. I like to sleep in complete darkness.

We are both tired — him from the uncomfortable sleep, and me from the lack of it. We do have a guest room with a perfectly good bed, but it’s not our comfy bed, and so we endured.

And now, we wait again. Ten days until we get the results, and then another neurology appointment to see what’s next. Maybe this time, we’ll get some answers.

Until then, we’ll keep going — and “enjoy” our daily drives, grateful for small comforts and hopeful for clarity ahead.

Being hearing impaired is not a choice, being a kind courteous person is!

I am a member of many hearing loss groups on facebook, when I lost my hearing they helped a lot with not feeling alone and finding someone who understood my struggle of dealing with losing my hearing overnight.

Most days I am good and I believe I have adapted mostly to my current situation, but we all have our bad days. Days when the ringing in the ear is so loud that it does not matter what setting your hearing aid is on , you can hear absolutely nothing. Days where you can not figure out what people are saying no matter what. These are very frustrating and depressing days and can throw you into a loop.

During the pandemic and even today in some places, there was masking all around & plastic barriers made it hard to hear for most humans but for those with hearing loss made it absolutely impossible, add to that the ability to read lips was gone as well and sometimes even the ability to read the facial expression was gone.

These days medical facilities still require a mask. I always make a point to tell the reception that I am hard of hearing and if they can make sure to let the people who will call me to either say my name louder or to approach me when it’s my appointment time. A lot of people are nice and say yes, sure. But when it comes to actuality, they all forget. 

The weirdest place I had that issue was at the ENT/Audiologist office. You would think that in these surroundings they will be more accommodating or understanding. But no! Music was loud on the TV in the waiting room, no closed captions and receptionists with shields who talk to the computer instead of lifting their heads when they speak to you.

Who needs to adapt? The customer service industry or the hearing impaired person? For the hearing impaired there is not much adaptation, it’s not like you can wake up one morning and decide today I shall hear. Even with my very expensive aids, there are times that I have no clue what someone is saying and I am not going to hide under a rock just because I can’t hear anything.

Customer service industry needs to adapt and workplaces need more training on how to intercat and integrate people who have disabilities as they are part of society.  Talking to people while facing them and not staring at your phone or computer should be taught early, this is a social skill that is important in any situation. If anyone asks you to repeat a sentence, repeat it and do not say “ oh, it doesn’t matter”.

Being hearing impaired is not a choice, being a kind courteous person is!

Conquering my own mountain

My life started as a complication. I guess my husband was right when he called me complicated when we started dating. Mind you we have known each other for years before we started dating so truthfully me being complicated should not have been a big surprise.

I was born complicated as I started my life with Spina Bifida and back in the ancient world when where I was born that did not mean an easy future and my parents were worried about all the complications that can affect the quality of my life.

Thankfully they raised my like any other normal child and never told me that I can’t do this or I can’t do that and I learned at a very young age to explain my condition. As I grew older the Dr’s continued to tell me of all the issues I would endure, got many warnings with no positive options. But I am a fighter and every time someone told me I will not be able to do something, I just did! It was not always easy and yes required effort on my part and sometimes Costco sized pain medication but I endured anyways. I even gave up and started again a couple of times and I learned to forgive myself during this process and not see these as failures but rather as a challenge to conquer. The last couple of years have been medically challenging but I will continue fighting, and as the Sound of Music song goes “Climb every mountain” I will continue to climb physically and mentally . Last week I made it to Mt. Fuji! There will be more mountains and that’s ok- I will conquer them one mountain and one peak at a time.