I have always been obsessed with music.
There are those that use the phrase, "Music is my life," but it's a phrase I don't like. Your life is your life. Music can be a big part of it, but nothing other than your life is your life.
But as close as I can get to that phrase in my mind, that's how I am.
Some of my first memories are of me playing the piano. I would sit at my great uncle's baby grand in his Charleston home as my cousins played upstairs in his game room. I would pick out various Top 40 hits with my tiny fingers and cackle when I got one right.
I did this until I was about five, both on his piano and on an old organ-keyboard combo that my parents bought me.
I remember learning the graduation song, "Pomp and Circumstance," by ear on it right before K5 graduation from Sumter Christian.
I started lessons sometime at 5 or 6. I was unlucky with teachers. My first three were military wives and were taken away too soon by their husbands' orders to far away lands. I cried at 9 when the third one, Lisa Dyer, left. I had advanced significantly with her, progressing to early intermediate classical pieces like Beethoven's "Fur Elise."
My next teacher, whose name will not be mentioned, was the walking definition of evil. A sense of artistry and curiosity within my playing that was nurtured by my previous teachers was whittled away under the three years I was with her.
She actually yelled at me the day I dealt with death for the first time - my grandfather dying when I was 12. I had been unable to practice, and I couldn't focus during the lesson. My parents had sent me while they went to the funeral home to make arrangements.
And when I told her he died, she yelled at me.
So, after that lesson, I went outside and took a pocketknife my sister gave me, and I slashed her back tires. I've never told anyone that.
My parents were frustrated with her, too. For three years I had barely progressed. I wanted to get into competitions, and she wouldn't allow it. I went on a wait-list for one of the best teachers in the southeast, Sheldon Timmerman of Sumter.
I finally got in with Mr. Timmerman when I was in eighth grade. I was 13.
But he treated me like a freshman in college.
Each 45-minute lesson encompassed theory, pedagogy, sight-reading, ear-training, scales, modulations, writing and music history.
He made us pick four composers that we would study each year. I had an affinity for Russian music, folks like Shostakovich and Prokofiev. Khatchaturian and Mussorgsky. Tchaikovsky and Scriabin.
The more atonal, the better.
During this time, I also became obsessed with musical theater. I like stories told through song. I've always been a fan of Disney movies, which for those who know my general personality of not being the most pleasant person, I'm sure that comes as quite a surprise.
I play both modern and old-school musicals in the office frequently, and my co-workers just adore that.
Most days, you can hear anything from "Hamilton" to "Pippin" to "Legally Blonde" to "Wicked" coming from my office.
Earlier this year, I became obsessed with the soundtrack to "Waitress," for which pop star Sara Bareilles wrote the music. It tells the story of a woman, an expert pie maker who is stuck in a small town and a loveless marriage. She faces an unexpected pregnancy after an affair with her doctor, and has all but abandoned the dream of opening her own pie shop.
At the climax of the show, Jenna, the main character, sings a mournful song, "She Used to Be Mine," about lost youth and eventually admits in the second verse that she would actually give up the baby to have another chance at a happier life.
I started listening to this musical around the time I was diagnosed with Stage IV kidney disease in April.
I'm now Stage V in both kidneys.
I will start dialysis Nov. 7, first by training at the clinic and then moving to home peritoneal dialysis in the subsequent weeks.
At one point in the song, Jenna sings, "She's broken and won't ask for help."
As I get closer to dialysis, my symptoms are getting worse. I basically feel bad most days. The mornings, which are typically the best part of the day, feature nausea and listlessness, while the nights feature cramping and excruciating back and bladder pain.
I have the sensation now of always having to urinate. And it's a guessing game as to whether I really have to go, or whether it's the kidney disease playing with my mind. Car rides have become the worst part of the day, as I'm never really sure if I'm going to pee myself, or if I'm just having more pain due to the kidney disease.
I believe a part of this to be psychological: My body and brain know that I'm soon to start dialysis, and are either rebelling or preparing me for it.
I cannot decide which.
I also have the shakes pretty badly. And it's getting harder to control my hands when I sit down to play the piano. I find myself flubbing hymns in church that I know without even needing the music, even though I always use it because I have an innate fear that I will forget it.
So, now, kidney disease is toying with the thing I enjoy doing most in this world.
I hadn't listened to the "Waitress" soundtrack since about May, after I got tired of it. I'm one of those people that will play something over and over and over again until I'm sick of it. To this day, my college roommate, Bryan, cannot stand Aimee Mann, after I went through a three-month phase in senior year where I did nothing but listen to her albums nonstop.
But in the last few days, I've picked it back up, and the line, "She's broken and won't ask for help" has hit me like a ton of bricks.
I am broken. It's time to admit that. I have two organs in my body that are basically worthless. Part of the blame is due to an acute kidney injury from 2009, while part of it lay at the feet of a doctor who didn't tell me for five years that my kidney function wasn't getting better.
I have a hard time asking for help. Everyone keeps saying, "If I can help in anyway, let me know."
The truth is, I don't know what I really need help with.
No one can stop the nausea. No one can stop the cramps. No one can stop the back pain.
I appreciate the sentiments, and when the time comes, I hope that I'm adult enough to ask for help.
But I tend to like to do things myself, which is very American, I think.
People also keep saying I look great, which I'm glad about. No one wants to both look and feel like walking death.
Dialysis will not make me immediately feel better. My doctor is working on other treatments as well, along with some lifestyle changes. I will talk about those at a later date.
I appreciate everyone's prayers and support. It has meant a lot to me through this struggle and the previous one with hidradenitis. This is such a wonderful community to be a part of.
I'm fighting to be a part of it for a very long time.
