I am a daughter, sister, niece, granddaughter, student, EMT, skier, lifeguard, 1st degree black belt, Netflix addict, and I happen to fight a few chronic illnesses. I wear a lot of different hats. Multitasking is one of the things I do best.
I mention multitasking because I am constantly hiding my severe pain from the rest of the world while I go about my life.
As a person living with the most painful disease known to modern medicine, Complex Regional Pain Syndrome (CRPS), I find the storyline behind Me Before You highly offensive. CRPS ranks a 42/50 on the McGill Pain Scale higher than childbirth or amputation of a digit. You see, CRPS itself isn't fatal, but the complications from it becoming systemic most certainly are. Even though I don't want to be in pain the rest of my life, I don't see another option. Suicide would be traumatic to my family and friends, so I don't even let my mind go there.
CRPS is known as the "suicide disease" and I have lost many close friends to suicide and those other complications I talked about. Among those complications include serious infection, malnutrition requiring tube feedings, severe contractures lasting months or years, and osteoporosis.
Just last month, I spent 10 days in a coma fighting for my life. I just so happened to be at the Mayo Clinic being tested for rare diseases that left me in a wheelchair for 7 months. We were staying in a hotel and on the morning of May 12th, 2016, when I was status epilepticus. My mom called 911 and they transported me to the ER where I had a 2 EEGs and a CT scan. After some tests, I was put on antibiotics, had a lumbar puncture, and was placed on a ventilator. An NJ tube was placed for medications and nutrition. Then I was sent to the neurotrauma ICU.
Over those 10 days, my dad and brother drove from Pennsylvania to Minnesota, while they all prepared for my death. My mother was planning her 19 year old daughter's funeral; something no mother should have to fathom. Doctors told them to expect me in a vegetative state at best if I were to survive at all.
Family and friends lifted my family up in prayer in hopes that I would eventually return to them. Well, I woke up. I wasn't myself physically, mentally, or emotionally from the damage from the seizures, but I was alive. I couldn't swallow, speak, write, or talk. When I was finally moved to the rehabilitation floor, I had to learn everything again. It was like being a little toddler.
All these complications stemmed from the medications I take to manage my conditions. I fought as hard as I could to come back to my family and friends physically and neurologically. I am truly amazed by the body's ability to heal itself. When I came off the ventilator, I couldn't speak right. On May 29th, I couldn't walk or write and my speech was still not quite right. My perception of color and depth perception were terribly off.
Fast forward to June 6. I've been doing taekwondo for a week. When I started back, I could barely do a front kick without falling. During sparring matches, I would fall several times. It was a hot mess.
My color perception is normal again, as is my depth perception. I'm still working on finding the right words when I'm speaking to someone, but I'm sure with time that will improve.
And as for my taekwondo class tonight, you could have fooled me. My balance was nearly normal, my speed back, and my memorization of my forms didn't miss a beat. In fact, I even midtermed with my class.
Yes, it hurts me just to sit in a chair, but it also hurts just as much to go out there ski, do taekwondo, go to college, and live the extraordinary life I've been given because I can say that despite the pain, I'm blessed. I wouldn't want to die just because one part of my life isn't going my way.
So Hollywood, next time you film a movie about a sick person, consider all those that can only hope to see the light of tomorrow. We don't all want to give up that easily.
*In this letter/poem, I attempt to imagine what went through my mom's head as her daughter fought valiantly between life and death. As without being a mother myself, I know that I can't possibly fully understand.*
I'm going to start with what she would have missed the most if the Lord had decided it was time for me to come home:
-Memories of my birth and childhood
-My face that resembled Nan's
-Our Daily Devotional Times
-Hugs and Kisses in ASL
-All the times I asked her to come to TKD belt advancements
-My laugh-I love to laugh
-My Undergraduate Gradation
-My Engagement and Marriage
-My Future Children
Mom, I'll never understand the trauma you went through during my Mayo Clinic admission. Countless people have told me how brave you were and continue to be. I can't imagine how you felt when you found me unresponsive. How you felt when you found out my EEGs were abnormal. When they put me on the ventilator. When I went into the coma and when you found Jeremiah, which I have come to believe was Nan physically at my bedside. God sent her to watch over me personally.
My life will never be the same again. My faith stronger. My physical pain increasingly greater, but my will to fight will always be there. Without my pain medications, I have been crying and attempting to sleep to escape the spasms and swelling. But God kept me here for a reason. I don't fully know why yet and maybe I'll never know. I know I have a message for the world I just need a functioning computer with which to write it. I can only hope that my neurological function returns to baseline. But again, God's will be done.
I shouldn't have survived this ordeal according to medicine, but with God, anything is possible. He has shown us that many times over the past few years.
Why He keeps taking me to the brink of death and bringing me back, I don't understand. It's traumatizing my family and friends; something that none of them deserve. When I was on the ventilator, I remember crying, asking God to let me hug my parents (but I was in restraints) and see my brother graduate from high school in a year. I asked God for a year to see my brother graduate high school. I've gotten to hug my parents and I never turn down hugs from anyone, but the one thing I wanted was to see my brother graduate high school.
I'd like to see more than a year, but I'm not going to get selfish. I never know when my body is going to turn on me. Only God knows the time.
-June 5th, 2016
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!