Dear Literary Loves,
Oh dear. This is most frustrating in that I just read a memoir about a chronic illness that I was diagnosed with at age sixteen and I am unable to wholeheartedly endorse it. Actually, I have a memoir manuscript about this same chronic illness, but because I also have several additional ailments, I included all of those in my manuscript because my writing is more about living with multiple chronic illnesses. It is not solely focused on Meniere's disease. My manuscript is not the one I am reviewing. And what is truly difficult is when I read a memoir about a chronic, debilitating illness that I actually also have and the memoir that I have read and am reviewing leaves me bitterly disappointed.
So for the past two weeks I have been slowly working my way through the book, Losing Music: A Memoir by John Cotter. The book's publisher is Milkweed Editions, an independent, nonprofit publisher. The book is essentially about a college instructor and writer who begins losing his ability to hear the fine differences in the music that he enjoys. He begins experiencing loss of hearing to the point that he needs to face someone in order to have an idea of what a person is saying. Sometimes he only understands an occasional word someone is saying in a conversation.
Next, he begins hearing roaring noises which I quickly recognize as tinnitus. When this author finds himself on his office floor once the room starts spinning and he begins getting sick due to the quick rotation of his surroundings, I am right there too as most Meniere's disease sufferers become well-acquainted with vertigo preceded by hearing loss and continual tinnitus. Here's one of many differences between our manuscripts: this author develops the disease in the prime of his life which I am guessing is late 20s to mid 30s and I developed the disease at age eighteen.
The author proceeds on a quest to have hearing tests done, research hearing aids, and visit some major hospitals in order to obtain a diagnosis and surely a cure. Only as far as I know, there is no cure for Meniere's disease or either my specialists have been lying to me since age eighteen. This patient wants and expects a cure. And when he spends a week at one hospital only to realize no one can definitively give him a cure, he gets angry. Fascinatingly, when I went to my first research hospital in North Carolina, the specialist looked at me and said there is no way I could have Meniere's disease as I do not fit the textbook case. Man, did he get humbled when my tests at that hospital demonstrated I did most likely have Meniere's disease in my left ear!
From the beginning of diagnosis, I did not expect a cure for Meniere's disease. When I was informed there was no cure, I did not get upset. I simply wanted to know by what means are we going to treat the symptoms so I am not lying for twelve hours on the floor with the room spinning and me vomiting into a trash can. Maybe it was because I was so young at diagnosis, but the knowledge that there is no cure for Meniere's disease I accepted as fact and it made me more determined to find some form of treatment for the severity of symptoms.
The standard treatment for Meniere's disease is diuretics, anti-anxiety meds, and vasodilators along with a seriously low sodium diet. At least that was the treatment regimen I was offered. This author gets much the same treatment except his includes Omega 3s and Magnesium. Oh, and he gets really jacked hearing aids which cost a fortune. He has to stop teaching. He gets married and obtains good health insurance. Now he is able to afford to see top specialists in the field, but no one gives him the cure he so badly wants.
Meniere's disease has its own schedule of intermittent hearing loss, vertigo, and tinnitus. I never wanted hearing aids. No way. Not even hearing aids that sync with a cell phone or come with a key fob. Not happening with this southern belle folks. There are some treatments for Meniere's disease that are more drastic like gentamicin shots to the inner ear. There is still no guarantee of a cure and you might lose even more hearing too. There is also endolymphatic shunt surgery in which a drainage canal is inserted inside the inner ear to drain the fluid (endolymph) which is believed to build up and trigger vertigo. Neither interested me and I think this author was not confident these treatment modalities would work either.
Or you could go quite radical and sever the nerve leading to the inner ear which most definitely will cause you to lose hearing. Does it stop the vertigo episodes? No idea. As far as I know it has not definitively been shown as a cure for vertigo or Meniere's disease. Neither me nor this author wanted to take that drastic leap.
So when this memoir author moves from Denver briefly back to the northeast, he is frustrated and angry. At times he is highly irritable and agitated (I totally understand). He contemplates losing any ability to hear whatsoever. This contemplation along with the other volatile symptoms appear to make him feel he will be a burden to others and he considers suicide. I contemplated total loss of hearing in one ear and took sign language courses in college just in case I needed a way to communicate in the long term should I lose the hearing in my left ear. My right ear has never, ever had any problems with sound or Meniere's disease. The disease pushed me to find a counselor to assist me in learning to cope with the severe symptoms of the disease. The disease scared me witless at times, but I never contemplated throwing in the towel.
The author then goes into how the satirist, poet, and clergyman, Jonathan Swift, most likely had Meniere's disease and it appears to have driven him mad. Then there is the discussion of who actually put together the concept of vertigo and hearing loss being related and that would be Prosper Meniere who originally was a trauma surgeon at France's National Insitute for Deaf Mutes. Once this author sees that people are still drawn to him despite the inconveniences of illness, he appears to come to a kind of acceptance of Meniere's disease. Once he begins writing he seems to make the turn toward a new way of living with chronic illness. He returns to Denver and begins teaching writing courses to refugees who also are trying to find their comfort level with a new environment, population, and way of life. They have had their lives upended too. Once the author's focus is not entirely on Meniere's disease and how much it has cost him, he definitely appears to find a new purpose and adapt to a new way of living more assuredly with Meniere's disease.
Honestly, I could only take reading this book in short amounts of time. I empathized with what the author was experiencing related to Meniere's disease symptoms and lack of treatment options. I was even happy when the author went to reside at a shelter for those experiencing homelessness due to addiction simply because he sees how others have had their lives derailed and are trying to find healing and stability. In the end we all must make a decision to live or not live with the cards we are dealt. The ending of this book was somewhat hopeful, but I still felt overall the book was morbidly poetic regarding Meniere's disease. I am glad the author found his way to writing; I wish I had known the success he has had with writing. Writing has allowed me to process a lot of the ups and downs in my life. I find writing therapeutic.
I hope the author finds peace with Meniere's disease. If it is of any benefit, I have had the disease for thirty-six years and I have retained seventy-five percent hearing in the left ear that has Meniere's disease and 100% hearing in the right ear which never has developed Meniere's disease. Alas, I was informed from the beginning of Meniere's disease diagnosis that it was highly likely I would develop the disease in both ears and eventually lose all hearing. I am really glad when it comes to Meniere's disease that I weighed all treatments carefully and did not take any specialist's word as the gospel because presently, I have proved most of them wrong.
Honestly, I found it quite difficult to read this book. At times I had to put it down and walk away from it because it depressed the hell out of me. Actually, I was disappointed that a memoir on Meniere's disease was written such that it left me feeling like I have leprosy. Chronic illness makes me unique. I most definitely never want it to make me feel condemned. I take a totally different approach when writing about Meniere's disease and I am sad that my version most likely might never see the light of day unless I self-publish. I did not go to Harvard or Stanford. I am not a poetic writer. I write for those of us who want the truth presented in a common, heartfelt manner with a side of hilarious chaos.
Till my next review,
Grace (Amy)
