A Letter to My Teenage Self at the Beginning of My Chronic Illness Nightmare
Dear 15-year-old Kimi,
Today, you entered a world I hoped you never would. I had hoped you would just go on sailing through life, never thinking about the illness that almost took your life 14 years ago when you were still in Korea. Unfortunately, every time you think it’s over, it’s just beginning. You will be forced to face things I never thought you would. You will go through surgery after surgery, never getting answers. I know this sounds like a nightmare, and trust me it will be, but there’s a light at the end of the tunnel for everyone, including you! You will turn into the most compassionate, forgiving person ever.
You will have “treatments” you never dreamed of, complications you never knew could happen. But you will, in the process of this entire nightmare, gain the most beautiful soul you could have ever imagined. If you don’t believe me, I will give you a list of the wonderful things you will gain through this nightmare.
You will have many failed surgeries. That I will not lie about. But you will begin to understand that all these surgeries were helping your doctor figure out what is wrong, and you will unfortunately learn that because of the nature of your problem, surgery is the only option, and you will do so with unfailing grace.
Your doctor is explaining to you. Explaining, explaining and explaining. Sometimes you don’t even know what he is talking about. Sometimes you will just want to tune him out. But you will learn even though you’re shy, you need to be a proactive part of your health care — so much so that you will buy books on neurosurgery and watch TV shows.
Your doctor’s telling you all the odds, and you always seem to be on the losing end of it. But somehow you find through that infinite grace I talked about how to be thankful for everything you have, even if you are on the wrong side of the odds. And you will be on the wrong side more times than the right side.
Today is a turning point. You have jumped in. You can’t go back. I believe you have two choices, though. You can either give in, or fight with all your heart. You can embrace this unpredictable illness and show it that it will never define who you are. And you will find yourself in the process. You will be glad you were made the way you were.
Sincerely,
Still fighting
Follow this journey on Blessings in Hydro.
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Kimi Sorensen is a young adult living and coping with hydrocephalus, slit ventricle syndrome and chronic pain syndrome from hydrocephalus. She lived her first 14 years incident-free, despite being born with hydrocephalus. She had four to five surgeries as a baby, but after her surgery when she was a year old, she was completely fine for 14 years. Her entire world was turned upside down 12 years ago. And now here she is 12 years, 40+ surgeries, and 2 strokes later that took her ability to speak and walk. As a result of sustaining over 40 brain surgeries with more than her share of bouts with meningitis, both bacterial and chemical, she now suffers with chronic pain.
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