You don’t know what you have…
...until it's gone.
I've never been vocal about my illness as it is such a private thing, but right now I can hardly contain myself that I feel I need to blurt this out, somehow, somewhere... I'm not sure if it's right to use a blog, or to write to a yahoo group, or on Facebook, but what the heck, I am so ‘up there in the clouds right now’...I'll tell you my story.
In the late 90's or early 2000, I don't even remember unless I can ask my Dr. next week, it happened so suddenly. My husband and I were redoing the front of our Mobile Home. It was only about 10 years old, but the front was affected with black mould and we were tearing it all out to be redone. Just a few hours into the work, despite wearing a mask, my head began to spin, it hurt so bad and I ached all over. I ran a bath to seek relief, but it became worse and that night was taken to emergency and hospitalized. The doctor on call didn't believe it came from the mold as it is a common occurrence on our wet coast, but as a precaution held me overnight. The next day, despite not being able to walk on my own I was sent home where the illness took me down into a spiral that would last for 6 months. I had come down with a Virus that affected my balance center and vision. Later the Doctors would determine I had a virus of the hearing organ and an inflammation in the connection to the brain. They said it wasn't Meniere's (because it normally affects only one ear) but whatever struck me, it caused me to be bed-ridden for more than 2 months and convalescence for another 4 or so. For weeks I was unable to even open my eyes because the world was spinning every second of every day and my eye muscles kept my eyes rolled into my skull. I was unable to walk nor could I control my balance. I actually feared for my life and thought I would die.
I wasn't extremely religious, even though I was raised a Lutheran Protestant who believes in Jesus. I prayed to God to please help me. I wasn't very religious, but and our small town heard about me and sent a Minister to my home with 2 others who blessed me. Not long after I was able to get out of bed and would sit up a few minutes here and there and eventually take more and more steps, but some people were talking in our small town when I would stagger into the grocery store, that I must be suffering from alcoholism. Never assume! lol. I wasn't even on any medication other than something for motion sickness.
It was this virus that would slowly take my hearing. From then on I have lost more than 50 decibels and am continuing to loose on average 10 decibels every 3 years which will mean I'll likely be considered deaf in approximately 15 years. I'm considered moderately or half-deaf right now and although I'm not really one to complain, I wanted to write to some of you who know me, how much joy I'm experiencing right now. Pure and utter joy!
Yes, I'm soooo happy that I can hardly see the keyboard as the words are swimming. (Good thing is I don't need to see as my fingers remember the keys). I can hear!! What a tease this experience is, to remember what it used to be like. Alas, it will be short-lived as I only get to try these digital aides for 2 weeks, but I already don't want to give them back. The difference they make... The first thing I did when I got home is phone my daughter who instantly said "Mom??? I don't have to repeat everything I say!!!! what's going on?!" For years I struggled on the phone in general and in the last couple of years I wouldn't even go near a phone unless I absolutely had to and would make my husband do all the talking for me, or I would have to get out my amplifier and that darn thing just amplifies absolutely everything and would make my ears hurt. Now I realize an amplifier is just NOT like a hearing aide at all. I can still hear some sounds in the normal range, but the rest is just gone. I could no longer hear paper ruffling, leaves falling, birds whistling in the morning, the microwave or oven dinging when done and even the alarm clock wouldn't wake me anymore!!...but at least in person I could still hold a conversation by reading peoples lips, but that wasn't possible on the phone!! How I missed holding a conversation! Some of my friends didn't even know I was hearing impaired and some still didn't until now, but I began to repeat over and over the same words many times in one conversation..."I'm sorry?" "Excuse me?" Do you know how... tired...I... am... of saying these words? of course I feel sorry when something bad happens to someone else, but I'm so tired of having to 'apologize' for my hearing loss. I shouldn't have to apologize everywhere I go! And the hearing loss has turned me into a Hermit. It has turned me anti-social...because I cannot participate in full or I have to pretend I heard what was spoken...it is a lonely world.
My father-in-law, who has age related hearing difficulties, before I even tried this second pair of ears, said that I wouldn't like them. I can't believe he said that and I thought ok...they must not be working then, but when the Clinic offered me to try them before having to purchase them I said "why not!" And oh boy, was my Father-in-law wrong!! Well, my loss isn't age-related either, lol, I'm not that old.
My husband joked that these might become the most expensive pair of Diamond Earrings I could ever imagine owning (not that I own any!!), but I also can't understand why our medical system won't be covering me for these Wires in my ear, not one penny of it and since I don't have any sort of insurance...well, it will be a difficult road to come up with 5 grand for these babies, they might as well be Diamonds. My mother said she'd love to help me out, but doesn't have that kind of money and I was raised to never purchase something that I don't have the money for. I'm tempted to put them on my Visa like the Clinic says I can do, but what if I can't make the payment? Will a guy come to my house and tear them out of my ears and repossess them? LOL, the thought!!
I now regret having gone for the trial...I shouldn't have tried them unless having the money first, but I thought that my Father-in-law would be right as he doesn't like his. Too bad he can't just give me the one he has! but it doesn't work that way. And I wrongly assumed that Medical would cover me because of an illness and a medical ailment. Our Canadian healthcare is so strange...same with a Wisdom tooth...if you get them pulled at a Dentist then you pay, if done in the Hospital, then Medical pays...If by chance the Ear Doctor says there is a remote chance this is in any way operable...then medical would cover the surgery, so why not a Prosthetic...but then...who is listening? But I thank 'you' personally, for lending me your ears…
If you can, or want to help contribute toward my hearing in any small way, please look on the right for the fundraising activity. Each contribution, even the purchase of a tutorial or supplies from my shop, adds up toward my quest.