My life… challenge

santa rosa wedding and engagement photographer

The other morning I came across a Facebook post  from a fellow “wobbler”  that made me think about his situation from two different perspectives.  See, Bill blogged about how thrilled he was to walk his grand daughter down the aisle at her wedding, something he was looking forward to all of his life, that is until he was struck with “wobblers disesase” ,  but with the help of a cane and a slow pace, he was able to do something he had longed to do for many years.   This is something so close to home on many levels, one, being that I am a wobbler myself, and two, I am a wedding photographer.

For years, I have feared sharing this disease with anyone for obvious reasons, but Bill opened my eyes and I felt compelled to share with hopes to encourage other fellow wobblers.  In 1998, I nearly lost my life due to internal bleeding urgency, I was immediately hospitalized and was told that I would be in the hospital for several days until they could figure out how to stop the bleeding before proceeding with other necessary procedures.  After many days in the hospital, worried, frightened and begging my close friend Juli to please let my son Angelo, (then 8 years old), know just how much I love him in the event I did not make it.  Blessed again by the hand of God, I survived!  I was sent home after 5 days and was placed on a regimen of strong antibiotics as well as other medications.  One of those antibiotics given to me through IV as well as by oral was Gentamycin.

Approximately 3 days after my being released, I attended an event for Halloween and suddenly noticed that I was “losing my step”, as I kept stating to my friends.  I actually felt drugged and immediately stopped to think someone possibly laced my soft drink?  The next morning it all hit me like a ton of bricks!  The floor below me felt as if it was the ceiling and I could not walk down our hallway without holding onto both walls.  I also had  numbness to my left side of my face as well as facial muscles severely dropping!  OMG did I have  a stroke!? I called 9-1-1 (keep in mind at that time I was actually calling work, since I too was a San Francisco 9-1-1 Dispatcher at the time),  and they immediately responded, while waiting I fainted and hit my head pretty hard.

So guess what?  No stroke, no heart attack, in fact no nothing!!! They said it was a severe case of VERTIGO!? I said…..NO WAY this was NOT vertigo and this is how my fight with medical professionals started.   This was definitely not vertigo as it was CONSTANT as well as not being able to focus with my eyes, walk down stairs, sit in a car or any movement that occurred, my head felt like  a balloon in the wind.    This was my life for about a year until one day my good friend Mickey called me and told me to turn to the Oprah Show, and this show folks, changed my entire life and approach in my medical quest to find answers!  There was a woman named Lynn on the show, and she shared her story on how Gentamycin damaged her and clipped her Flight Attendant wings forever! Lynn was a wobbler and the first person to go public with this.

When medications, vestibular therapy and other treatments failed, I was put through some extensive studies and tests at UCSF  and finally diagnosed almost two year of going insane thinking nobody was listening to me.   There was no treatment…the vestibular nerve that communicates equilibrium function to my brain was GONE, forever, that was that and this was my new life.   I refused to listen to doctor’s who stated I would be disabled for the rest of my life (little did I know they were right), but I refused also to accept no more driving, showering standing up, housecleaning,  or walking without a walker or cane.  NOT ME! Sorry I just way too many things to get done, and I can barely balance myself and now you want me to balance a walker?  Although Vestibular Rehabilitation helped me with understanding what my limitations were, I was determine to grab the bull by the horns and just LIVE!

I’ve learned how to compensate yes, and how to recognize my limitations, but I also learned this disease needs to be whooped in the behind and it’s a mind over matter game at times with me.  Of course I cannot control how I feel when it’s windy, dark,  snowing, or when I am faced with stairs, unsteady surfaces like sandy beaches, uneven grass and oh forget about hiking and slopes for me!  I have also learned after several years of challenges and injuries from a fall down an entire cement staircase (top to bottom), that I was not just going to sit back and let this take over.  In 2004, I decided that was it!  I returned to work as a Dispatcher (thank goodness for extended leaves), and in 2006 I finally picked up my photography and switched from film to digital.  By 2007, my husband and I were shooting weddings and preparing for several  contracted wedding photography jobs in 2008.

In 2012 I took another great plunge and I separated from my position as a SFPD and SFFD Dispatcher and pursued my quest as a full time wedding and lifestyle photographer.  Ok, so I will not sit here and say it was easy or that I have not been faced with challenges because I have and will continue to be faced with limitations and challenges, but aren’t we all. What does it mean to be a photographer as a wobbler?  Well perhaps things like shooting at the beach, on hills, uneven surfaces, night time, moving vehicles are a few challenges I face, and I have been known to take advantage of a monopod and use it as a walking stick, oh and yes, out of focus shots — so, getting a few more frames than I need to be sure is a benefit (thanks to digital photography).  I do however may shoot film for personal projects.
So why have I decided to go public with all of this?  Does it really matter?  Well to me it does not but just as Bill’s story touched me, I look to touch the life of someone out there who is living with Wobbler’s Disease and whom may think that perhaps they can’t quite do what they want to do.  I hope to encourage you if you paint, to paint, if you sing, then sing, if you dance, then dance……we may wobble and even sometimes literally fall, but by george we MUST live!
How on earth does it feel to be a wobbler?  I tell folks if they wanna see life thru my eyes,  and how things appear in my wobbling world, I invite them to look at this! And keep in mind, once a wobbler always a wobbler, it’s not like intermittent vertigo, this is constant, 24 hours 7 days a week..for the rest of my life, it does not go away nor does it get better.  It’s just what I have and not who I am . (notice how the camera view tickers from left to right…..this is how things look as I walk, and I do not use a cane and many times you will see me hauling camera and lighting gear)…GO FIGURE!
People ask me HOW on earth can I do what I do…. As a wedding photographer,  I tell them … One step at a time and I stay off the slopes!
Have a splendid day!