2020: Pain and Peace

By all accounts, 2020 was going to be “my year” to accomplish a laundry list of goals and tasks not the least of which was advancing my rank toward my 4th degree black belt in Songahm Taekwondo; a task that required traveling to Pennsylvania from my new home in Aiken, South Carolina. After a painful round of chemotherapy at the end of 2019, I was looking forward to spending quality time at our cabin nestled in the woods near Seven Springs while I trained 6 days a week. I never would have guessed that January’s training week would be my last “in-person training” and my last trip to my birth state of PA for a year and counting. I never dreamed my cousin’s fairytale Disney wedding would be cancelled not once, but twice.

Living with pediatric onset stiff person syndrome, a very rare, neuroautoimmune condition I developed in 2012, just prior to my junior year of high school at OLSH; life was predictable for me most days as appointments were cancelled and medications crushed and put through my feeding tube every 6 hours. After my dad telling us we needed to move into our new house and out of the rental house around the 2nd week of March, leaving him to live away from us because of his exposure to COVID-19 as an emergency physician, I was alarmed. This virus was like none other he had treated in the past 30 years. However, we could not and still cannot risk my being infected as I am on chemotherapy and weekly immunotherapy infusions. I did not get to hug my dad for almost 90 days and even when he moved into the house with us, we were extremely cautious. Getting sick is not an option.

Easter was a tough pill to swallow and it was not really because of being the first of many socially distanced holidays. (Although I have to say passing my dad his food through a window while he ate at a folding table, isn’t a memory I will soon forget.) The week before Easter, my childhood friend went home to her Lord and Savior after a hard-fought battle with acute myeloid leukemia (AML). A devout believer in Jesus Christ and a 3rd year dental student, Katie gave a powerful testimony to all of us left on Earth through her dad who asked her in her last moments of consciousness: “Katie, can you hear me?” She nodded. “Katie, is the Lord talking to you?” To this, she responded yes with a nod. It is one of the most powerful testimonies I have heard about the Lord not in the Bible!

It is safe to say that my relationship with God only grows stronger with each passing day, each devotional, and each service every week. I have been immeasurably saved and reminded by Jesus Christ Himself how much He loves me, how I have been marked by the presence of the Holy Spirit, and that God holds me in His Right Hand; just as my family and I have gone walking on Myrtle Beach, Hilton Head Island, Charleston, and to the Kindred Spirits Mailbox on Bird Island, NC many times throughout the year. One of the many perks of living in the South is going to the beach year-round.

By the time July rolled around, I was really struggling with my SPS and needed another round of chemotherapy. I am convinced I have the best oncologist ever, so I did not mind it too much. It was mostly smooth sailing until my 3rd dose. I was taken by ambulance to the closest ER where I spent the next 8 days in the non-COVID ICU. There, I received my 4th and final dose of chemotherapy for the round in July. My legs felt if they had been shred off from the pain. I was not sure I had ever felt such pain; but certainly hoped I would never have to feel it again.

I spent my birthday month of August recovering from my leg and back injuries when it seemed like God had answered a prayer. For the first time in 4 years, I could wiggle my toes, eventually moving to my ankles and then to walking! I was ecstatic because I felt like I could really be the Maid of Honor my cousin deserved for her special day. To minimize exposure, the wedding was immediate family only, but it was such a glorious day on a gorgeous, green North Carolina countryside. I thought it was a pretty perfect day to celebrate a special union before God, months in the making!

One of the most unique parts of 2020 has been having to get creative with concerts and other events. I have enjoyed drawing nearer to God with my mom during the Casting Crowns Drive-In Tour and The Celebrating Christmas Concert with Natalie Grant and Danny Gokey. I also enjoyed hiking for miles around our area amassing miles and miles a day in pure, unadulterated nature, but unfortunately in early-mid December, I found myself alone in the ICU again. Now I had to find a peace in the storm of illness like never before. But everywhere I looked, I saw God. I was counseling a friend who felt like God had abandoned him and the Holy Spirit literally blew the door in to save the day. A friend struggling with alcoholism felt like God was a “million miles away”, but something about our interaction made him realize that the Holy Spirit was all around him. While I realized it, I did not know how God was helping me to not just survive but to thrive in life through Psalm 73. It was the most extraordinarily powerful moment of the year for me!

Unlike just about everyone else, my family was used to wearing masks to protect me from common respiratory illnesses during flu season. I started wearing the N95 respirators after contracting influenza A in college in 2017 during a particularly bad flu season. This precaution led to a lot of stares as I worked my way to graduation from the University of Pittsburgh, but it saved me from a lot of hospital admissions!

2020 showed me there is no “perfect year”. No job is safe. Anyone of us can be sick at any time. There is no peace on earth…There is a peace in knowing Christ. Thankfully, God did not ask for perfection… only that we try our best!