On Wednesday we drove to Toronto to meet with my neurosurgeon. As expected he prescribed an anti convulsent to stop my reoccurring seizures. As expected I need to take some time off of work to get my side effects under control. As expected I have to go back in a month for another MRI and consultation to see if my brain is swelling. Then my neurosurgeon told me that he is obligated to tell the DMV about my seizures and I can expect to lose my license for at least six months, maybe longer. Completely unexpected!
You may be asking yourself why this is such a shock. I have been told time and time again by friends, family and acquaintances that I would lose it; after all I am having seizures. However, both my family physician and an emergency room doctor told me that I could continue driving because I remained conscious and aware throughout every partial seizure. I trusted that as the truth. My neurosurgeon believes that this is the beginning of something much bigger and it is simply not safe for me to continue driving.
It has taken me a couple of days but I am starting to work through some of the anger.
Up until this point I have been scared but never really angry. I deal with things as they come. Put on a brave front, take the information in, process it and continue to carry on. John and I both have a great sense of humor so we poke fun at my AVM, seizures, general forgetfulness and other odd side effects in order to stay sane. Wednesday I had a reality check.
Without my driver’s license I lose my freedom, independence and normalcy. I can no longer work because my chosen career requires me to drive. Changing jobs is not an option because I simply can't focus long enough to learn a new position. I can no longer pick my kids up from school if there is an emergency, let alone take them to extracurricular activities. I can’t go to the grocery store, doctor’s office or visit a friend without asking others for help. I know that this set back is temporary but I feel like it was the final straw.
I am tired of explaining what an AVM is repeatedly, especially to the same people. I want people to understand that my recent surgery is not a quick fix but the beginning of a very long and dangerous journey. I hate that the radiation I received is compared to those of a cancer survivor. It is very, very different, as is my disorder. I want my friends to listen and support me but know that I can still listen and support them. I want people to know that I have skill deficits, memory loss and get tired easily but my AVM doesn’t define who I am.
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