I became a Wobbler in 2007 when I was poisoned with Gentamycin. My husband and I had just returned from a 2 week cruise to Hawaii; I started feeling poorly on the trip home. I ended up being admitted to the hospital because a bacterial infection had migrated into my blood stream and I was beginning to go septic. I was placed on a revolving schedule of 3 different antibiotics, vancomycin, gentamycin and ampicillin each of which was administered intravenously.
When I was discharged from the hospital, I was sent home to be on six weeks of the same schedule at home. My insurance company at the time would not pay for a nurse to come administer the drugs, so my husband and I were trained to administer them ourselves. We followed their instructions to the letter, but one morning I got a frenzied call from the lab that was monitoring my blood draws to say that my gentamycin levels had spiked and that I should reduce the dosage immediately. I am sure you know the rest of the story. I woke up one morning totally disoriented and unable to ambulate by myself. Initially, I had to “wall walk” in order to be able to get around. I then got myself to a highly recommended ENT in our geographic area and I was diagnosed with significant vestibular loss. He was very honest with me when he told me there was no cure. Some experimentation was being done in Europe with transplantation of hair cells, but even if they were successful that it would probably not be in my lifetime.
What I want to focus on is how I learned to live life as a Wobbler. Oh, there is no question that adjusting to this condition was a total bitch. I went through vestibular therapy for three months or so. I remember asking the physical therapist, “Will I ever feel normal again?” She looked at me and told me that she was going to answer my question, but it would be a while before I would understand her answer. She said to me, “You will feel normal again, but it will be a new normal.” She was right! It took me a very long time to understand it. My initial adjustment to this condition was hellacious. I had a sedentary occupation and I continued to work for 15 years after my initial diagnosis. The first two years were grueling. I would work during the day, come home and fix dinner for us and then sit down in a chair to watch some television. The next thing you know, my husband would be waking me up at 11:00 p.m. or midnight to say, “We need to put it to bed now.” My physical therapist explained it this way. She said that when you lose one sense, the rest of your senses go into overdrive producing severe exhaustion. Honestly, there were times during the first two years that I considered committing suicide. I was fortunate that I have an extremely supportive husband who was always there to support.
During that first two years, I was filled with so much rage and anger. I spent considerable time trying to find someone to sue. Sadly, the state statutes in Florida are very pro-physician in this kind of situation. I also found out that the infectious disease specialist who sent me home with very inadequate surveillance and supervision was an adjunct faculty member at the University of South Florida and as such had total immunity from any kind of malpractice action. I was furious when I found this out. Much of my time during these first two years was spent in depression, denial and in attempting to find someone to “blame” for what happened to me.
I reached the point that one day I had what I will describe as a spiritual awakening. I said to myself, “Bruce, you can either spend the rest of your life angry and depressed or you can decide you are going to make the best of each day.” I realized that the IV antibiotics I took had ultimately saved my life. It was my job to determine what I was going to do with the rest of my life.
I am happy to tell you that I decided that I was going to live each day in a state of gratitude and thanksgiving and to try to make a positive difference in this world.
Nineteen years after diagnosis, I am living my best life. My husband and I are both retired now and live in the mountains of North Carolina. We have very full lives. We do a lot of volunteer work with our church and I sing in our church choir, as well as in a community chorus called Mountain Song. Do I have bad days with the vestibular loss? Most definitely! There are good days and bad days, but I try not to let it interfere with me living a full life with my “new normal.” I try to take advantage of accommodations that are available to me. I have a parking permit for the disabled. If I am having a particularly bad day or if I am going to have to walk on uneven terrain, I use my walker. Also, I have many friends and I do not hesitate to ask for their help if I need it. I refuse, though, to let this condition dictate what I can and cannot do.
Every body’s story is different. This is simply my story told for whatever it is worth. Hope that it helps!