Although the things I’ve described so far seem dark and unforgiving, somehow I was able to cope with what happened. I did indeed wander aimlessly through the confines of uncertainty and grief yet I still ponder what it was that allowed me to remain optimistic and positive about my future. I still have no real answer other than to attribute it to my predisposing characteristics and survival – textbook I know. How this mysterious form of attitude developed in me in spite of emerging from an upbringing that was positive in most ways, but also very sad and scary having been a product of divorced parents and a family filled with alcohol and other abuse.
Somehow I was fortunate to have found a way to always be a very optimistic, positive and future driven person. That certainly proved to be the foundational glue to putting together the building blocks of adjustment and adaptation. Today I really believe it was growing up in the wide open spaces of a farm, of endless discovery possibilities, of life simple yet incredibly bountiful. There’s more to this and I’ll elaborate later.
With discovery in mind I set out to learn everything I possibly could about bilateral vestibular dysfunction. I began looking for that elusive cure. I searched and researched for every possible bit of information that would help me understand what happened to me. I read every academic research paper I uncovered which was no small feat in light of the fact that reading was extremely difficult because of the way my eyes reacted to moving along pages of written material. But I found a way… a ruler below the line I was reading and a piece of paper above the line I was reading. That way I had just one line to “focus” on at a time. Still it was challenging, but I did it.
In my search for answers I stumbled upon a support group of individuals who had experienced the exact thing I had because of the same antibiotic and everyone had same side effects! I sent an email to the founder of the group, Lynn Brown, and I received a phone call from her the very next day. We spoke for hours and Lynn, a former airline stewardess and now advocate, leader, and counselor, ignited a fire in me, fed my need for information, but most of all, assured me that I was not alone. I became a “Wobbler”. With Lynn, I shared an appearance on The Oprah Winfrey Show “Prescription for Disaster” as well as shared an amazing opportunity to go to Portland, OR to take part in vestibular research with the team of Dr. Owen Black, an otologist conducting neuro-otology research at the Legacy Health Systems. To this day I am so very grateful for Lynn’s generosity, help and guidance. Thank you Lynn. (http://www.wobblers.com/index.html)
With a fire in my belly and a cause to fight for, I became an advocate, a spokesperson, a warrior who refused to stay quiet. I became obsessed. I wanted gentamicin banned and I wanted the powers that be to hear my story and the story of the thousands of others I knew were trying to cope. I became a vigilante towards something that was defined and fueled by anger but also provided me with a coping mechanism and a way to release the anger and frustration that was consuming me.
I wrote to the FDA, I submitted an “adverse reaction” to a medication report; yes, you can do that! How else can the FDA accurately manage the safety of drugs on the market? If you have ever had a bad side effect because of a medication, please submit your own report by going here: http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm
I met with people to share my concerns and ideas for bettering the system of educating people of dangerous side effects to medications. I met with Sue Ann Thompson, founder of the Wisconsin Well Women’s Foundation (http://www.dhs.wisconsin.gov/womenshealth/wwwp/) and wife of Wisconsin’s former Governor and then U.S. Secretary of Health and Human Services, Tommy Thompson. With Sue’s assistance, I was able to get a prepared packet of information about gentamicin, the numbers of people affected by its adverse side effects, ideas for change, and a discussion about why aren’t the side effects of medications reviewed with a patient or the patient’s family when administered in the hospital? I still wonder why this doesn’t happen. One is certainly provided a ton of information when prescription medications are picked up at a pharmacy, right?
I helped coordinate a gathering of Wisconsin Wobblers where we shared time together as well as attend a town hall meeting with then Congresswoman, now Senator, Tammy Baldwin. http://www.baldwin.senate.gov/ We shared our stories and started a ball of information rolling.
Although these drives to effect change provided me with a sense of purpose each day, it was one solitary experience that changed me and flourished a picture of unforgiving darkness into a masterpiece of bountiful color. It came out of nowhere and was delivered in what I believe by a divine hand. As I faced each day I wrote, I wrote a lot. Writing was a self-devised therapy and coping mechanism I incorporated. Mostly as a way to release the noisy thoughts and fears that seemed to never leave me alone. Then one day the writing fell to the page differently – different from my own pen.
I had begun another day sitting at my kitchen table ruminating over how I was going to get through this, what my future would be like, who could I call that day to alert of the dangers of gentamicin and how could I help others who were going through the same thing and stop it from happening again. However, for some reason on this day I felt as low as I had since my induction into disability when without intention of writing, my hand reached for a pen and began placing words onto paper that placed into me a whole new direction. It began with: “I often think why did this happen to me? Why have I been put in this condition? What did I do to deserve this? I’ve thought about it for a long time and you know what? There are no real answers to these questions. It is as it is and I must learn how to live with it. I must accept it for if I don’t, I’ll miss out on the many still remaining beautiful things life my life has yet to offer”.
Thus began my fall into grace.