A deaf singer. That has to be some kind of cruel joke, right? Yea, I thought so too when the doctors told me I would be totally deaf by the time I was 30 years old. I was 18 then, and just starting my Worship Leading and Music Ministry career. There was a problem - see, I wasn't just a singer or keyboardist. Nope. I was Called by God into the ministry. So, what gives?
In my mind, the doctors had to have it wrong. Or maybe God was going to perform some amazing miracle and heal me so others would believe and I could continue being a worship leader... Right? I had it all mapped out in my mind. I would marry a preacher, have 3 babies (a boy and two girls), be a great singer/musician/evangelist to support my husband's ministry and we would travel the world spreading the love of Christ. That's a great plan, right? I thought so too. Unfortunately, that's not how the story has unfolded. Not by a long shot.
Oh, I did get married to a great guy who was also in the music ministry, and we did have those kids (well, two of them - our daughter ruined any chance for another kid but that's a story for another day) and I did get to travel to several exotic places on earth doing what I loved most... I even got to see a bunch of miracles happen before my eyes! My faith was STRONG! But... my own miracle never came... at least not in the way I expected.
I have Meniere's Disease. If you Google what that is, here is the first thing that will pop up:
progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear." The Mayo Clinic.
I don't talk about it much because I prefer to ignore it. I also refuse to live a fragile lifestyle, and I do not want others to treat me differently because they know I have a neurological disorder that challenges me in ridiculous ways they can't even imagine, every single day. There is no cure for this degenerative disease. Treatments consist of controlling the diet, getting plenty or rest and reducing stress as much as possible. And when I'm having a flair up, it can get extremely frustrating.
Have you ever been in a bar with a friend and you couldn't hear a word they were saying to you over the music and den of voices? Yup, that's the story of my life. And it is very odd how it affects me - voices in a certain range are drowned out by the ringing I try to ignore and yet, sometimes, whispers are extremely loud and piercing. It is completely unpredictable. Fun, right? Imagine a rain storm in your ear, that never stops, never lightens up and never goes away and that rain storm creates pressure behind your ear that gives you a constant headache. And on days when I'm lucky enough to hear softer sounds, I have little, if any depth perception and cannot pin point where the sound is coming from.
On top of that, the dizzy spells that hit without any real warning are debilitating. I once rolled off a table when the doctor blew warm air into my ear canal. There was no reason to move, but man, I didn't have a choice. His response? "Oh, you're used to dealing with this, aren't you? That is a typical response to this test when someone has been dealing with this for a while."
Listen, I'm a Harley rider. But rather than giving up the dream of having my knees in the breeze, I got a trike instead because I refuse to give up or live in fear of a random bout of vertigo. Life is too short to let fear rule me. And if all of that wasn't enough, there's more. People with Meniere's have these random symptoms that have no real rhyme or reason and they face challenges other's can't even fathom. It is very difficult to be "normal" when your brain and body are working against you. Meniere's Disease bypasses a person's ability to cope with stress and strong stimuli. We literally can not deal because our brain disengages from coping mechanisms, creating extreme physical reactions. How did my body react to this wonderful symptom? Ulcerative Colitis. Yup. My body developed a whole new condition, closely related to Crohn's Disease, because stress did a number on my system and my brain couldn't help me manage it. [insert eye roll here]
Yes, we all get awkward sometimes especially when thrown into uncomfortable social situations - it's taxing to say the least. But it's far easier for me to say, "oh, I'm a pescatarian" when going out to eat with friends because that means I took charge and made a decision for my life. What I rarely share is that while I made the choice to be a pescatarian, I didn't make that choice just because I wanted to be bougie and not eat meat. I did it because I have ulcerative colitis that is out of control and a regular diet is out of the question for my wellbeing. I refuse to live under a rock or on strong medications to control the UC but the alternative is beyond embarrassing. In 2017, I gained over 50 pounds in less than 3 months due to the strong steroids the doctors put me on when I was admitted to the hospital with uncontrollable cramps and bleeding. Now I struggle to lose the weight. The extra weight is not good for my body - it throws my back out all the time and I feel like I aged 15 years in a matter of months. I was an athlete when I was younger - literally an Olympic hopeful so being overweight and ill ALL. THE. TIME is just unacceptable.
And don't even get me started on the depression people with Meniere's face. I'm naturally a happy person, and I try my best to always find the silver lining inside the clouds of life. But man, there are days when that is extremely difficult. And it's not because I'm feeling blue or something random happens that gets me feeling that deep pull. I mean, yea, I have those days/moments too. Everyone does. But this is more than that. Depression is another symptom of Meniere's that can hijack a person's ability to see things clearly. Why do you think Marilyn Monroe chased a bottle of pills with her alcohol of choice? Why do you think Van Gogh cut off his ear? Yup - both of those lovely and melancholy souls struggled with... you guessed it, Meniere's Disease. Lovely.
The point is this, people with degenerative diseases adjust so they can try to keep living and thriving to the best of their ability. But that doesn't mean they aren't still struggling or fighting to be "normal" or at least perceived as normal. Everyone has a cross to bear. We all have things that challenge us. But if we let those challenges stop us from moving forward or enjoying our lives, we have failed at the one thing that makes life worth living; the joy of living itself.
So I challenge you to live your life to the fullest. Do not let your set backs destroy your resilience. Learn to embrace them and allow them to change you, strengthen you, mold you into a better individual. And when you see someone struggling for some unknown reason, rather than judging them or ignoring them, try reaching out. You never know if your act of kindness may bring you some much needed joy too.❤️
My name is Carla Helené. I am a cheeky naturalista, serial entrepreneur, speaker, educator and self love advocate who encourages women to embrace their truth, love themselves and make margaritas out of life’s lemons. Is there a recipe for this? I’m not sure I but I know we can figure it out together.
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