They said I couldn’t do it!

a TEM_5742

… images courtesy of S. Onyschuk – SO Studio

I don’t often share much about myself personally, this is a business, after all, but it’s time to talk about it. I am having a harder time “hiding” my “disability”, so I wanted to blog this to talk about the challenges I face daily that used to block me.

Don’t get me wrong, I am not looking for special treatment or hugs, but it was time to explain, as it is slowly affecting how I am perceived publicly and by clients/potential clients.

I’m told I have a disability, though I seldom feel disabled. I battle a chronic, incurable illness, that as times can beat me down emotionally, have me wishing for a quick end to the madness that is my life…. I pray for some quiet in my brain, then fear the very silence my disease creates. At times it renders me completely helpless, for hours, days, weeks and a few times even months. During these “episodes”, I literally cannot do anything for myself.

Few people know of my disease, even fewer have seen it first hand. I don’t want to LIVE as a diseased being, nor be defined by it. I don’t want to be special, I just want to live normally every second that I can. My disease is not visible, nor is it deadly. It’s not painful, but it is horribly debilitating. I no longer let it stop me, even when they said I couldn’t do it.

You see, for years I was told my life would never be normal. That I couldn’t work long hours, hold down any job, let alone run my own full-time business. I was told I couldn’t drive, shouldn’t fly and that I should go on disability and enjoy the good moments. Although I struggled to adapt for years, I’m glad that ultimately I didn’t believe them.

For years I thought I was going crazy, my signs, symptoms didn’t add up to anything. I underwent hundreds of tests and multiple hospitals. My mom & husband took me to so many appointments and nobody had answers for me. I would walk into walls, fall over, vomit uncontrollably with little or no warning. I had “episodes” where I would fall over and literally be unable to stand up. They told me I had vertigo, they told me I had MS, they told me it was all in my head and advised me to leave my husband (they were convinced he was abusing me as I was covered in bruises, and of course I was just afraid to admit it to them and repressing my abuse) – NONE OF THAT WAS TRUE. I saw 13 neurologists in 2 years and underwent every brain function test there was… They ALL were sure I had MS and started treating me for it. I didn’t have MS. Then I was just mentally Ill, manufacturing my symptoms in my brain…. I heard it all! This went on for 10 or more years!

One day 16 or so years ago, I was driving home from work at the photo studio I worked at. My whole world tipped upside down, literally, and I had to stop the car; I couldn’t move for hours; the vertigo was horrific, and I couldn’t stop vomiting or the uncontrolled spinning. I was terrified, then something fabulous/horrible happened. Fabulous because it was the moment that made a diagnosis finally evident, and horrible because to this day it has NEVER gone away… not for a second, and at times it threatens my sanity!

That horribly fabulous thing is technically called “TINNITUS”.

I can better describe it as a freakishly loud fax machine/microphone feedback like sound that goes off in my ear 24 hours a day, every second of my life. That “sound” is why I never sleep any more, it is why I snap at my kid for no good reason sometimes, it is why I yell at my little pup when she barks, as it’s like someone shoved a nail in my brain when she does. I have constant headaches, understandably. Noise is painful to me, but it’s fading. Not that sound though, ironically, it’s always with me, but all the other noises are leaving me. The music I love, my husband’s voice, the sound of birds, my favorite TV shows, my child’s laugh… all fading. I have lost 95% of the hearing in my right ear, and now my left is being attacked by this disease. I am going deaf.

The disease is Meniere’s Disease. It is horrible, it is mean and it robs me of many things I love, but I am one of the lucky ones. I am NOT as disabled as most with my disease, and I have found ways to live and work that work for me. I have learned what I can do and what I can’t, how to prevent episodes and how to better protect myself when they do occur. I still can’t control WHEN they happen, but am pretty good at adapting and compensating. I didn’t think I’d be capable of being a parent, able to properly care for my child, but I do, and I am.

It took years to get past the fear and the uncertainty; to believe that I could still reach my dreams and make them come true. They told me I couldn’t be a reliable employee, or run a business, that I would be debilitated so much that I would be unreliable at best. Well, after 15 years as a business owner, I have NEVER, not been able to complete a job. I have compensated by being prepared and professional and always having a backup plan.

If you are interested in the details of my disease, please check out the link below. I need not go into all that here, but there is plenty of info out there if you want to.  I have found that this page best describes what my daily life is like.

http://gwenlan.co.uk/Ann/symptoms.htm

And this is general info on the disease itself.

http://www.menieres-disease.ca/what_is_menieres_disease.htm

YES, at times I can be down for a month, or just a few hours. Yes, it comes from nowhere, with little to no warning and it’s often all I can do to get to a “safe” place and ride it out. At times I will appear off balance or even a little drunk… I’m not, I’m just VERY dizzy. To most, they can’t understand what they don’t see. I LOOK healthy and able right?

I am severely hearing impaired… more frequently now I read lips. I can’t hear people calling me from behind and though I may APPEAR to ignore you, I’m not. I often speak too loudly, as I can’t hear how loud I am speaking. I lose my train of thought, as the noise in my ear is incredibly LOUD and utterly unrelenting. I may appear to turn my head away from you… it may seem aloof and like I’m not listening, but it’s the opposite… I’m turning my head to get my good ear closer to your lips so I CAN listen to you. I may misunderstand you, or just not hear you, and ask you to repeat yourself. I often choose to email clients over phone conversations, as I can’t hear well on the phone, and some take that as being unsure or unprofessional.. it’s not, it’s just easier for me.

I am talking about this now for a couple of reasons…

1) because people are noticing now. They are starting to assume I’m being rude when I can’t hear them, or are noticing my hearing loss and inquiring about it.

2) I am finally confident in myself and my ability to cope with my disease, and am tired of hiding and being afraid to talk about it.

3) A mentor (and now friend) of mine has done many talks about the fear and blocks we have that limit our potential. In the last year I have been working hard on releasing the fear and blocks of my disease. I have decided that I will not let it define or limit me any more. I have succeeded and will succeed and do what I love without the limits I used to place on myself, especially those that the doctors told me I would have.

BehindTheScene

I realize now that I am limitless. The only block I have is my own beliefs, and I refuse to believe that I CAN’T realize my dreams. I refuse to be blocked anymore!

So, to my friend, Sue Bryce who really has no idea how much she’s changed my life, I will say this… I am releasing the blocks placed on me by doctors and by myself. They said I couldn’t do it and I prove them wrong every day.

I may get knocked down from time to time (literally), but I will not be defined by limits any more. Though the time will probably come when I cannot hear, it will not stop me from sharing with the world what I am so blessed to be able to capture and create. I am choosing to embrace the blessings, and let go of the curse.

I don’t need my ears to see beauty, or to capture moments that will last a lifetime, I only have to believe that I have the talent and the ability to do that, and I will.

They said I couldn’t do it…. But I DO (and I LOVE it!).

  1. Effie L.
    28-08-2014

    Renata you are a very inspirational person.
    Courageous and wonderful of you to put this out there.

    Lots of love sent your way lady!

  2. Diana Krishka
    28-08-2014

    Renata ,
    I can really feel for you. You see, our youngest daughter Shelby, now 18, has Meniere’s Disease too. She has been coping with this now for appx 4 years. Started when she hit High School. And , like you said, people see you in that state and think other wise. I know me and my husband, Brian, though other things were going on, peer pressure, friends, then sick all the time. Not going to school and finally almost giving up on everything in life.She was experiencing all the symptoms everyday for months on end too. She had also printed me out info. on depression and suicide. She actually had her self dignois before anybody, doctors, specialists. etc knew. From a vibrant young girl with honors all the way thru school to basically hitting rock bottom… And she did. But, I’m very glad to announce with watching what she takes into her body. Like salt and coffee. Plus we have this device we sent away for from sweden. It helps to regulate the ear’s air pressure. And it really does to seem to help her. I want Shelby to read this. You have given me hope . More so, you will have given a young lady new life too. LOVE YOU!! Diana

Leave a comment

Your email address will not be published.  Required fields are marked *