As much as it would please me to tell you that I was a delightful 12-year-old girl, I cannot truthfully say it. Now don't misunderstand, I was no delinquent. I simply had a bit of that oh-so-charming adolescent attitude. At my house the punishment for such an attitude was confinement to home with no television, internet, or friends. So in 2003, a series of groundings left me doomed to spend September in its entirety serving my time. Evidently I wasn't catching on any too quickly.
However, at the outset of my detention, my cousin Anne called me asking if I could spend the weekend with her at my aunt and uncle's house. When I regretfully told her of my predestined solitude, Anne would have none of that. She was always a quick-thinker in desperate situations such as this, and she somehow convinced my mom to loosen the terms of my punishment to allow for cousinly bonding, effectively rescuing me from the depths of misery. And so I spent every weekend that month with my amazing cousin, Anne. Who knew being grounded could be such a party?So many of my best childhood memories were spent with my cousins and my big sister, Krista. Anne and her sisters, Laura and Sarah, were several years older than Krista and me, which, in my eyes, automatically qualified them as the most incredible people on the planet. It was almost as if I had four big sisters instead of only one. Every holiday, birthday, and special occasion was celebrated together, and each Christmas, not long after sunrise, I came to expect a phone call from Anne, asking, "When are you guys going to get here?!" Laura, Sarah, and Krista were very much of the "color-inside-the-lines" demographic, striving to succeed while abiding by the rules. And we have always loved them that way! Thank goodness some of us behaved as proper young ladies should. Anne and I, on the other hand, had more than our fair share of spunkiness, and we seldom paused to consider that our playful antics might just land us in a bit of mischief. We never intentionally crossed the line... But we toed that line just often enough to keep our parents on edge! I was undeniably flirtatious, just as Anne had always been. One evening, during one of the aforementioned groundings, I was gushing to Anne about my dreamy junior-high boyfriend. Those dazzling green eyes, that beguiling smile... That striking five foot three stature; an awkward six inch height difference, my plight as a tall, gangly girl, was easy enough to overlook in the name of puppy love. Anne laughed, saying “Sarah, you are going to grow up to be just like me... And your parents are gonna hate it!” A smile spread across my face; what Anne didn't realize was that being just like her was precisely what I was aiming for. The similarities between Anne and me did continue to grow, but not as we ever could have anticipated. Significant challenges were ahead for both of us. We soon received the devastating news that Anne had angiosarcoma, an extremely uncommon terminal form of cancer. Our close-knit family grew even closer, giving Anne as much support as we possibly could. Swiftly I dropped my preteen angst, but I continued to spend all of my free time with Anne. The year following her diagnosis, my heart was broken when Anne passed away on Christmas Eve. I couldn't help but question why God had taken one of my best friends away. She was only 22, so full of life! God, are you sure it was her time to leave? Soon I would draw inspiration for much-needed strength from Anne's ability to maintain her kind and fun-loving disposition, even in the face of a ruthless disease. In hindsight, I now recognize that I was at the forefront of a medical crisis of my own, fighting a mysterious staph infection, unexplained fevers, curious blood counts, and subsequent lingering pain, all at the very same time that Anne was enduring her battle. And then two weeks after she passed away, I sprained my ankle, an event that catapulted a series of drastic changes for me. I developed Reflex Sympathetic Dystrophy (RSD), a neurological condition causing constant, unimaginably intense pain. And following the proactive therapy of weeklong epidurals, nerve blocks, and more medications than I would care to list, I developed crippling abdominal pain, making it nearly impossible to eat. Cereal and baby food became my sole form of sustenance. From that point on, my health continued on a downward spiral. Any sense of normalcy quickly diminished. I was forced to relinquish my great loves of horseback riding and dancing, I could no longer keep up with swim team, slumber parties became nothing more than a fond memory, and my days of absence at school soon outnumbered my days of attendance. And oh, what a bitter sting I felt when I learned how easily one of my closest friends could forget me, barely even speaking to me on the rare occasions I could make it to class. Sound check: God can you hear me? You see, I kind of have goals for my life. Can't I just be a normal kid, please? And I really want to be a missionary in Africa someday! You know, that "make disciples of all nations" idea? So you can heal me now. Sound like a good plan? Okay, I think so too. Glad we had this talk! Oh yeah, and thanks for listening! Now, I knew that I couldn't strike a deal with God. Even the most honorable of intentions cannot "earn" healing. That just isn't how it works. But I was feeling very desperate and lost... In so many ways my childhood came to a crashing halt when I was just 12 years old. And as I was hurled into a labyrinth of confusion, there was still this adolescent naïveté within me that made it difficult to grasp the harsh realities of chronic illness. For years now my family and I have attempted to navigate our way through this baffling maze surrounding my illness, picking up puzzle pieces along the way. And naturally, from time to time we have taken a few wrong turns. I have felt so frighteningly small and helpless while at the hands of a cruel physician. It is an almost unfathomable occurrence that far too many patients face, but the sad truth is that some doctors are more concerned with saving face than saving lives... They have too much pride to admit that they don't understand what is wrong with their complicated patient, and frankly, some of them just don't care.
But I have seen the very best of doctors as well. I have an exceptional team of specialists, kind and compassionate people who have helped me sort through the often bewildering myriad of facets involved in my illness. It has been an arduous and continual search, but nearly 10 years into this quest, answers are still gradually being discovered. It is believed that I have mitochondrial disease (also called mito), a genetic disorder which can affect nearly every system in the body. It has led to Gastroparesis, which is essentially digestive tract paralysis, leaving me unable to eat, reliant on IV nutrition. Mitochondrial disease is also the culprit behind my relentless pain syndrome, RSD. Mito can also affect the bone marrow; in my case this has resulted in a very rare cancer-like condition, Hemophagocytic Lymphohistiocytosis (HLH), which causes my immune system to overreact, triggering macrophages to abnormally consume my blood cells. This organ-damaging disorder necessitates chemotherapy or another form of immunosuppressive treatment. For many patients, a potential cure is found in a bone marrow transplant, an option I hope I am never forced to pursue. From almost every vantage point, my life seems to be spinning out of control.But appearances can be deceiving. Today is my 22nd birthday, and when I reflect on this long and tumultuous journey, I barely recognize the questioning and doubtful, rowdy and mischievous 12-year-old girl at the beginning of this road. I have come to realize that God's way is absolutely perfect, a truth that was difficult to comprehend in the confusion I felt back then. The Lord is working within me, impressing upon me the fact that I can fully trust in Him to lead me each step in this crazy, unpredictable life. I admit that there are days when I continually have to remind myself that the temporary pain of the moment will most certainly pass... And God has faithfully rescued me from each of these darkest days, serving as my shield and comforter when I have been so afraid and overwhelmed. So really, what do I have to fear with a defense like that? Through my cousin Anne, God taught me how to handle adversity gracefully and with a smile. This girl, my partner in mischief, every bit as spunky as I ever was, had the most loving heart of anyone I have ever known. During the short time that we were blessed to share together, we created an impressive repertoire of silly anecdotes. But as thankful as I am for those cherished memories, what I remember most about Anne is the depth of her love. Really, how many 21-year-old girls do you know who would spend their weekends with their teeny-bopper cousin? But Anne didn't even consider such superficial matters... She loved unconditionally and wholeheartedly; it was this love that came to define her. I think God might have given both Anne and me that extra dose of moxie knowing that we would need it to fight a few dragons during our lives. I can scarcely believe that I am now the same age that Anne was when she went to heaven. In so many ways I still feel like a little girl, making her outstanding courage all the more inspiring for me. What a comfort it is to know that Anne is with our Savior now, taken care of for eternity; and how exciting it will be when I see her again someday. But apparently there is still more that God desires to accomplish in me. I hold onto the fact that He is able to heal me, and perhaps someday He will. But for now, He is refining me through my remarkably unique experiences. I may not be a missionary in far-off lands as I always hoped to be; but I can still be the Lord's disciple in a special way, according to His perfect plan, as He leads me to opportunities to tell my story, sharing His boundless love with others. Although I am physically unhealed, God has mercifully blessed me with peace, opening my eyes to see the silver linings that He lovingly places for each of us on our cloudy days. Through these beautiful gifts He has given me direction, shaping me into the person that He wants me to be. I can guarantee that I never would have chosen this life for myself. If left to my own designs, I'm sure I would have kissed a few too many boys, and my lively, rambunctious shenanigans would have surely gotten me into a pickle now and then. But that was not to be. God's plans so greatly outshine any crazy escapades I could have dreamed up. Among the suffering, the Lord's blessings abound. I am so very thankful for His provisions of incredible family and friends... Including Alice Eloise, the sweetest little Double Doodle who has added so much sunshine to my life! I am a very blessed girl, to be sure. But above all else, because of the moments of weakness that I have felt, when the Lord's perfect strength carried me through such fearful experiences, my faith in Him has blossomed, allowing me to feel God's presence within my heart all the more acutely, a most spectacular blessing indeed. I am often asked how I remain cheerful despite my pain. The fact is, God empowers my optimism. And He will do the same for anyone who looks to Him for joy and peace. Just put your trust in Him and take a look around. You will see His silver linings... They are always there. Sarah Kathryn Frey