Dear Lit Loves,
Wow. I am impressed to finally see that traditional and small publishers are opening their minds and including the thoughts and experiences of women who are writing in the narrative/memoir genres about chronic disease, illness, and in some cases, death. Currently, I am reading The Unwinding of the Miracle written by Julie Yip-Williams regarding her experiences with stage four colon cancer. I think it is high time that the world of publishing open its doors and windows to writers about these topics because let's face it, eventually, we're all going to face some sort of death and many of us will face a diagnosis at some point in our lives of a chronic, life-long illness. And if you do not personally experience a diagnosis like this, I bet either a parent, sibling, friend, acquaintance, coworker, etc. will encounter a time when he/she is diagnosed with chronic disease. I did. And I was only age eighteen at the time. Talk about feeling like your life is at the stage of : GAME OVER. Fortunately, for me, I never settled for the mindset of negativity once I received a diagnosis of chronic illness; I decided the best direction and course for me was to learn how to ADAPT.
Yes, I was watching the North Carolina men's basketball team play Clemson on Saturday evening March 2nd, 2019 when the coach, Roy Williams, suddenly turned quickly and then immediately went down to one knee and then promptly took a swift dive into the lap of one of his assistant coaches. I recognized what was happening to him. It was VERTIGO. I know because I have experienced these episodes on many occasions as I have lived with the chronic illness known as Meniere's disease for well over thirty years.
When vertigo overcomes your body it feels like everything in your visual spectrum is spinning as if you have suddenly jumped on the carnival ride known as the spinning teacups from hell. In other words, for me, it is not that I am spinning, but everything in my visual field is spinning and continuing to spin at a higher and higher rate of speed. So you know what happens? You fall over, grab a wall, grab a chair, drop to the floor, or get to a seated position as soon as possible. I was impressed Roy Williams was able to walk off the court with help from coaching staff as I would have been on my hands and knees crawling to the locker room, sprawled on the floor, and trying to find the nearest waste basket as vertigo usually involves regurgitation when it happens to me.
When I first began experiencing symptoms of vertigo and Meniere's disease, I had no clue what was happening to me. Initially, I thought I was dying. My left ear would have siren-like ringing, my hearing was off in the left ear for a few days prior, and then at some point I would find myself start sweating profusely and begin seeing the world in my field of vision begin spinning. I might be on the floor with a waste basket for ten or twelve hours just dry heaving or regurgitating what looked like anything I had eaten in the last week. Eventually, the spinning would slow and finally stop. I was so thankful when I finally received a diagnosis and medication for my vertigo episodes, I actually wanted to do cartwheels.
Over the years, I have tried various medication regimens for the disease. I knew that as I kept experiencing these volatile vertigo episodes I was losing the cilia in my inner ear that help me achieve balance. Three years ago I was informed that 97% of the cells governing balance in my left ear are essentially dead. Gone. So when I stand anywhere I am essentially balancing myself via the near perfect hearing and balance that I have thanks to my right inner ear which has never developed Meniere's disease. That was a shell-shocker when I was given that news.
There are various surgeries a person can have to essentially bring a stop to any further vertigo episodes, but many of those surgeries and treatments often subvert an individual's balance ability along with the vertigo. I chose to endure the vertigo and not have anyone deliberately incapacitate the cells that govern my balance. And I have endured. And now I have vertigo sparingly and when it does occur, I am maybe seeing my world spin for about thirty minutes and then the whole episode is over and I recover and continue on with my life. My medical specialist believes that my Meniere's disease is in a dormant stage as I have had fewer and fewer episodes of vertigo as I have aged and lived with the disease. I will tell you that the disease taught me to learn to adapt to the resolute possibility that my health can go plunging southward at a moment's notice. The whole experience of this chronic illness has given me confounding and enlightening interactions with our medical system in this country. And I know what to do if and when a vertigo episode strikes. I'm always prepared as I always have my medication with me and some meds I take daily to prevent vertigo.
The best part about Meniere's disease is that I learned how to advocate for myself as a female patient in what was an often patriarchal medical world. That is swiftly changing now as more women are going into medicine than men. I learned that I am the only one who can advocate for my health and the quality of healthcare I receive and from whom I receive it. For me, respect is earned and not automatically given because hey, even in the world of medicine, not every medical specialist graduated at the top of their class and many medical specialists I have encountered have the interpersonal skills of a skunk. Thus, I have also learned how to size up and evaluate each and every medical specialist I encounter even when it comes to one that is treating my parent or a close friend.
I would like to one day be able to share my experiences regarding Meniere's disease and two other chronic diseases I have with the reading public. I hope traditional and small publishers continue to give individuals like myself an opportunity to do this as you would be amazed what you can learn from a person who has been there and experienced that when it comes to any disease or illness. I am a person and patient who would rather know what I am dealing with as opposed to live in denial or submit to the concept that ignorance is bliss. Knowledge is power, people. Especially when it comes to your health.
Till my next post,
Grace
(Amy)
No comments:
Post a Comment