A Hearing Loss & Late Deafened Blog

ONE ROAD… by Kayla Siebold

In Cogan's Syndrome, Deafness, Hearing Loss on February 1, 2013 at 4:53 pm

 

SWC Kayla Siebold Newsletter

Kayla on her wedding day.

A new journey… a new life and new challenges. Is it worth it? I think so!! Sometimes life isn’t about “waiting for the storm to pass, but about learning to dance in the rain“… This is something I have come to understand more and more with each passing day since losing my hearing so abruptly in September of 2007, at 22 years young…

I look back now, and see my life not as though I have travelled two separate roads, but as one road that came upon a sudden, unexpected bend in the road. Before hearing loss, I was a fun-loving, outgoing, outspoken person. I loved people, traveling, social gatherings, jokes, music, dancing… I guess you could say, I loved my EARS… and can honestly say I never gave a single thought to what it must be like for someone living with hearing loss… I was completely uneducated and ignorant even on the whole subject, but loving life just the same…

In the weeks leading up to the bend in the road, I was very busy putting the final touches on my own wedding plans, raising my 14 month old son, 3 months pregnant with my second son, and taking care of our new acreage. I was preparing to embark on the next stage of my life, however, all the planning in the world could not have prepared me for what life had in store…

In the early morning hours of Friday, September 21, 2007, I suppose you could say, my mind was filled with all the expected anxiety and excitement for the next couple of days… Today is the day the wedding party gets together, decorates the hall, and practices rehearsal… Today is also the day my life takes a sudden turn of events, and what I thought was the start of a much anticipated new journey, is in fact the start of a journey, but in a whole new way.

As I opened my eyes that morning, I was instantly filled with shock, horror, disbelief and pain… I couldn’t hear a thing… nothing!! With tears streaming down my face, I went to the Doctor, and the rest of the wedding party went to the hall to decorate and prepare for tomorrow. The doctor gave me a prescription for antibiotics and nasal spray, telling me (writing to me) that it was likely a viral ear infection and could would pass as fast as it came. So… I carried on, disheartened, and with HIGH hopes that this would pass in time for me to walk down the aisle the following day.

Long story short – It never passed… I walked down the aisle deaf, both ears roaring with tinnitus. I read my vows off a notepaper as “Repeat after me” was not an option. In fact, I even yelled my vows out as I had no control over my own voice…Pictures were interesting, as I had a hard time understanding what the photographer wanted me to do, and the speeches after supper were utterly and completely heartbreaking… I missed every word, and I was right there in the same room… I tried my best to keep a smile on my face, and to not let my experience and emotion ruin the day for everyone else. When the dance started, I couldn’t even tell if the music had a fast or slow beat… but, nevertheless, certain guests insisted that they still dance with the bride… and so I endured, asking them first “FAST or SLOW?”, hoping to be able to read their lips well enough that my efforts on the dance floor didn’t leave me looking like a complete fool… ha ha!

In the weeks following the wedding, my hearing never returned, instead I started to have problems with my eyes… they were red, and painful and constantly tearing…After several visits with Specialist Doctors at the University Hospital, I was diagnosed with Cogan’s Syndrome.

Cogan’s Syndrome:  An extremely rare autoimmune disease characterized by some of the following abnormalities – Eye diseases such as interstitial keratitis, conjunctivitis, episcleritis, scleritits and retinitis. Symptoms sometimes include pain, tearing, photophobia and gradual blurring of vision. Mènières like symptoms starting with severe dizziness, vertigo and instability. Hearing loss is a feared and classic complication of the disease, followed by tinnitus. Almost all patients experience bilateral hearing loss, sometimes progressing to total deafness. With treatment, most ocular symptoms usually regress, but deafness is only rarely reversible. Vasculitis in Coganès syndrome can cause major organ damage, and in rare instances can be fatal. Patients may have silent coronary artery disease, inflammatory aortitis, inflammatory bowel disease and pericarditis occurring in about 10 – 15 % of patients. Non specific systemic symptoms can occur such as fever, fatigue, headache, night sweats, arthralgia (joint pain), and myalgia (muscle pain).

With this new diagnosis in hand, once again I was filled with shock, horror, disbelief and pain… I spent a bit of time sulking, thinking WHY ME, and then moved onto denial… I could not so easily ignore the hearing loss part of this, despite a hearing aid, but, for me, that was enough to deal with, and it was easier at the time to pretend this wasn’t true…I was borderline depressed about everything, and bitter.

I became reclusive, never wanting to go anywhere, embarrassed at my inability to communicate, frustrated and very short tempered. How my new marriage survived those first few months, I’ll never know… ha ha.

I then realized one random day, after hating who I had become for some time, that this was life now… Get used to it or be done with it…I had a new husband, a young son and one on the way…The new bitter, miserable me was not fair to them. I knew I was going to have to figure out a way to carry on with life despite the new challenges I was facing. So, I picked myself up off the floor, and tried to make the most of my situation. The first step was accepting the fact that nothing was ever going to sound like it used to… The next step was being vocal about my situation, and taking control of certain situations… explaining to people that I was hard of hearing, that background noise severely interfered with what I could hear, and that they needed to face me when talking to me. Over time, everything seemed to get a little easier and people learned to work with me… not against me. I soon learned that humor was going to be my best friend and to laugh at things…laughing seems puts others around you at ease too, when you can look at a certain situation and joke about it… For example, having a neighbor who was at my house for coffee one day ask me “Did someone just pull in your yard?” … and me laughing and saying… “How would I know?, I’m the deaf girl… ha ha ha…”

If I have learned anything since this happened, it’s that I need not try to make the world around me understand, but for me to have an understanding of the world around me, as most people are not rude or ignorant on purpose, but by default… I have lived to see both sides of the coin, and believe most people are more accepting once they understand…

To say my life has been easy since I lost my hearing would be a lie. I’m young, my kids are small, my marriage evolving. Absolutely, it is challenging. However, it has also been very rewarding!! I have a new appreciation for life, and empathy for many people. My patience has grown leaps and bounds, and I found that although the hearing loss may have meant I lost out on a few friendships, I also gained friendships… solid friendships with people who really do care, and will take the time out of their life to try and understand me, who don’t let my hearing define me, but simply accept is as one of my many characteristics.

I love the lesson this has taught me, but will probably forever despise the manner in which it was presented. Yes, I miss my hearing, I always will… but I am OK with the new me, and will continue on as if this was my plan all along 

I know, firsthand, how lonely hearing loss can make one feel, and am very well aware that the rest of my journey is littered with potential ‘potholes’ for me to stumble in, threatening depression, however, I can see in the distance that they exist and will do my best to avoid them. Corresponding and sharing stories with others who live with hearing loss has been a savior… A much welcomed reminder that I am not alone…

 Kayla is a 27 year-old stay-at-home mom of two healthy and rambunctious boys.  She and her husband (when he’s not away working on the pipeline) spend their time developing and creating their own homestead, a life project.  Kayla grew up on a farm and has always loved the outdoors, animals, and running equipment.  In the years before hearing loss, she spent eight months in New Zealand dairy farming, and has also worked in the depths of the coal mines, sometimes shoveling for 12 hours straight… no kidding!!  Since losing her hearing, Kayla spends her time keeping her boys out of trouble, gardening, camping, fishing, reading, and spending time on the Internet sharing her stories and experiences.  She hopes someday to write about her experiences in learning to accept the changes hearing loss has made to her life.  Kayla says, “Sometimes it’s a struggle to find enjoyment in things I used to enjoy, but I choose to not get too caught up in that, as there are new adventures to be had! “  Like many of us, Kayla cites “music” as the thing she misses the most. 

Note:  Since the time of this writing, Kayla has undergone a cochlear implant and continues her journey of learning how to hear with the implant. 

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  1. This is an amazing, touching story. My heart goes out to Kayla. What a couragous young lady. Best of luck to you.

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