My 2020

2020. That's a loaded statement. For many of us, 2020 has been the most chaotic, frightening, and challenging year yet. From a worldwide pandemic, the loss of several innocent black men and women, and the violence happening in our country, hope often seems lost. 

Today, I want to share my 2020, the ups, the downs, and forever life-changing moments that have made this year one for the books. So grab some popcorn, and relax because it's a wild one. 

As some of you may know, in March 2018, I went into remission after a four year battle with high intracranial pressure. No one knew exactly why I had it or how it went away, but all we knew was that I was healed. In my mind, that was it. That miraculous healing was my cure; I had put IVs, endless spinal taps, and pain behind me and a future of endless possibilities in front of me. 

With my new found freedom, I went to Hawaii, ran cross country and track which I was awarded MVP for both sports and made regionals in track. In the spring of 2019, I ran the half marathon put on hold after my injury, where my journey began. During this time, Having Faith Cures was recognized for its work in reaching young girls with life-altering illnesses in the Women of Achievement series for the Chatham Magazine in North Carolina. My life felt complete. At the start of my junior year, I enjoyed the simple worries of grades and high school drama. I was living out my passion for preaching the Gospel through FCA at my school and enjoying all of the little things life brought. 

As the new year came around, I began training for another half marathon; however, I fell down my stairs. This minor fall that was virtually a non-event led to a relapse. This time, the pain and debilitation skyrocketed. For the next six months, I couldn't sit up for longer than one minute without my brain feeling as though it was going to explode. My hearing was muffled, and a ringing noise often invaded my eardrums. My eyes were also in rough shape as it felt like vaseline was smeared continuously across them and they went black multiple times a week. Sharp pains and pressure behind them often made living uncomfortable. Dizziness, fatigue, and nausea followed as well, and with that, I was admitted to Duke Children's Hospital, where many tests were done to get to the bottom of my symptoms. 

Migraine cocktails, multiple rounds of the horrendous DHE (if you know you know), and a lateral tremors began on my body's right side, where doctors told me it was due to stress. After seven days of more questions than answers, I was sent home on an oral steroid and ordered to see a Phycologist. After a month of the pain continuing, I got a spinal tap, which relieved all the symptoms for twenty-four hours. My doctor at Duke, the incredible Dr. Linda Gray, diagnosed me with a sister of Hydrocephalus, Pseudotumor Cerebri. Pseudotumor Cerebri occurs when a patient has an overload of cerebrospinal fluid (CSF) in the brain, which inevitably caused all of my symptoms, including the tremors. My diagnosis with Ehlers Danlos Syndrome, a rare genetic connective tissue disorder, explained why a simple fall made me relapse. After the following five months of spinal taps once a week, scans, and other procedures, we were told that a shunt or a stent were my only options.

Due to COVID-19, I could not see a neurosurgeon for four months as people were not seeing new patients. This made my life unimaginably tricky as I was living spinal tap to spinal tap, on complete bed rest for six months straight, and every day was just as monotonous as the last. Finally, in mid-June, I got an appointment to see the fantastic Dr. Kyle Fargeon at Wake Baptist in Winston-Salem, NC, who specializes in Pseudotumor patients with Ehlers Danlos Syndrome. After a CT Venogram and Angiogram, Dr. Fargeon found that my right Jugular Vein was narrowed due to the jugular bones collapsing the vein. He decided that the best treatment would be a VP Shunt, which meant brain surgery. Despite the prognosis of brain surgery, I wasn't once nervous about the procedure. Instead, I was ecstatic and counting down the days. Dr. Fargeon assured me that after receiving the shunt, my pain would go down dramatically. 

Five days before surgery, I was admitted to Wake Forest Baptist Hospital for pain management, where I received Oxycontin and Morphine multiple times a day to keep my pain at ease, and on July 10th, I had the shunt placed. Waking up from surgery felt surreal, the pressure was gone instantaneously, and I was just left with surgical pain, which felt more than bearable. The following two weeks were rough as I lost a lot of weight due to not being able to keep anything down. However, once the nausea passed, I felt like a new person. My energy came back quicker than I expected, and I started going on walks to help build up my stamina. Just over a month post-op, I started cross country practice, which, unfortunately, I had to stop due to the increase in pressure when running. However, despite the mini hurdles that have come after surgery, I feel the most God-derived joy and peace. 

For nearly six years, my family, friends, and people I had never even met prayed bold prayers in hopes that I would receive a diagnosis and healing. Even though it took a lot longer than I expected, the Lord delivered. Calling this year (or nine months) a whirlwind would be as dramatic an understatement as a hike up Mount Everest. However, despite the adversity and Satin's relentless fight to destroy my faith, the Lord came out victorious. 

I hope my story, as wild as it is, may bring you the most overwhelming peace. I never thought that I would get my miracle, but I got it twice. Twice the Lord healed me, and twice He used my story to reach the masses for the sake of the Gospel. If you or a loved one is going through the storm, know that "the Lord will never leave you nor forsake you" (Deuteronomy 31:6), and "He is faithful in His promises" (Psalm 145:13). 

- Grace O.

 

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