Stripped Away
Dear reader, did you know that I used to be a magnificent musician? I don’t know how much of that aspect of my life has been shared with you. And I’m not exaggerating. I was truly magnificent.
At the age of 7, I showed interest in playing piano. Over the course of 2 years, I taught myself every song in the beginner piano books we owned. I was a sponge that just couldn’t get enough. At the age of 9, I began taking private lessons.
A piece I wrote and performed at age 10.
Wherever we moved, I continued taking lessons. I began teaching piano at the age of 17 and had about 60 students by my senior year of high school. I continued growing as a musician and even went on to major in Piano Performance in college! Prior to graduating with a performance degree, I was required to give one final performance. My senior recital consisted of a full hour of memorized music. I would spend anywhere from 4-6 hours PER DAY in the practice room. Even as I type that, I am in awe of what I accomplished during that time in my life. I learned the depth of my own strength, endurance, and capabilities.
Performing Rachmaninoff’s Elegie in E-flat minor, 2006
After graduating, I returned to teaching full-time and opened my own piano studio in 2008 after Dan and I were married and bought our first home. Since that time, I have gone on to teach HUNDREDS of piano students, including a handful of some that have gone on to major in music in college! I also worked as a freelance accompanist for the school district for 15 years. I had the opportunity to work with middle and high school choir, band, and orchestra students.
I say all of this because I want to paint you a picture of who I was prior to getting sick in 2019. I lived and breathed music. Sadly, one of the first symptoms I experienced occurred during a choir rehearsal, as I’ve spoken about in my Blurred Vision blog post. My body began to disagree with the act of playing piano and reading music. I would get tunnel vision, tremors, weakness, dizziness. I no longer felt confident as a performer and stopped accompanying musicians as I knew they deserved better than what my body could give them. However, I continued to teach music… until recently.
“Two weeks ago, I taught my final lessons... for now. ”
I have another surgery scheduled for August 22nd. And this one will be a doozy. My latest pelvic MRI showed extensive growth of stage IV endometriosis. I have DIE (deep infiltrating endometriosis) on my bowels, my left ureter, my right ovarian vein remnant - the area where my right ovary has begun to grow back - and adhesions coating my abdominal cavity. This surgery will involve up to 4 surgeons: my lead gynecologic surgeon who specializes in endometriosis, a colorectal surgeon, urological surgeon, and vulvovaginal surgeon who specializes in vulva disorders and reconstruction.
Though I had hoped to continue teaching until then, my pain level has increased, my energy level has decreased, and my ability to balance it all is gone. I’ve been so good at masking my pain and acting “normal” while in discomfort. While teaching, I sometimes wore my trusty TheraIce migraine cap or sat on a heating pad or took high-dose pain pills just to get through my long days. But I just cannot do it anymore.
“A few months ago, I was also diagnosed with Lupus.”
On the evening of my final lessons, I swallowed my first round of Methotrexate - a disease-modifying immunosuppressant and low-dose chemotherapy used to slow down the damaging effects that Lupus has on my organs. So far, the side effects of this medication have shaken my body: nausea and lack of appetite, ridiculous fatigue, bleeding gums, and migraines that wake me in the night. I continue to question whether taking the medication is worth the side effects or if I should take my chances without it. Either way, this new SLE diagnosis has rocked my world.
I believe there is a big difference between “complaining” and “lamenting”. Complaining is to express dissatisfaction or annoyance about something, whereas lamenting means to mourn or express one’s deep grief. In my own head, I have danced along that fine line between complaining and lamenting. Yet I share about my experiences - both physical and emotional - as a way to grieve my “losses” as well as connecting with other people who have gone through similar experiences. I hope to be a voice for others who don’t voice these hurts out loud but feel them deeply in their souls.
““Telling my story to God and other people is how I have grieved my losses, processed my situation, and determined my next steps forward.””
Over the past 4 years, I have lost a lot of who I was.
I’ve lost my ability to perform at the level in which I know I am capable of.
I’ve lost the ability to rigorously exercise and therefore, have lost my self-image.
I’ve lost the energy I once had to do all of the things • with all of the people • all of the time. Now I do SOME of the things • with SOME of the people • SOME of the time.
I’ve lost my ability to teach piano and along with it, the weekly opportunity to see my piano babies and their amazing families who I am blessed to now call friends.
And, sadly, I’ve even lost some friends along the way because not every friendship can withstand the test of chronic illness.
So who am I now? And what do I do with myself?! I look in the mirror and see a shriveled up version of who I once was, terrified of just withering away, watching everyone I love continue to live their lives while I’m just… stuck. I have to believe that something good will come out of all of the bad. Otherwise, what is the point?! How can a pianist create music with her {figurative} hands tied behind her back?!
My voice. My thoughts. Those have not been taken away from me. So maybe my role has shifted. And maybe I am meant to share - to lament - my experiences with you, dear reader. Because maybe you can’t. Or are too timid to. Or just don’t know how to piece together the jumble of thoughts in your own head.
From The Beginning, I’ve called this blog my fidget spinner. It’s my distraction and calming mechanism when I go through tough times. And, to be clear, it’s not ALWAYS tough… but lately it is, more so than not.
So I will again invite you to join me in my calming corner. Grab your own “fidget spinner” and take deep breaths with me. Allow yourself the space and time to mourn, to grieve, to feel all of the feels. Because I still have my ability to listen and hug and talk and pray. And I’d love to do that with you.
