A Response to ‘Me Before You,’ From Someone With a ‘Suicide Disease'

I am a daughter, sister, niece, granddaughter, student, EMT, skier, lifeguard, first 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. CRPS itself isn’t fatal, but the complications from it becoming systemic most certainly can be. 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 a “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 after suffering from severe and prolonged seizures from metabolic encephalopathy. I just so happened to be at the Mayo Clinic being tested for rare diseases that left me in a wheelchair for seven months. We were staying in a hotel 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 two EEGs and a CT scan. After some tests, I was put on antibiotics, had a lumbar puncture, and was placed on a ventilator. A 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 due to 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 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 properlly. 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 back, 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, 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. 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.

Romanticizing assisted suicide is a slippery slope that some European countries are starting to slide down fast. So Hollywood, next time you film a movie about a sick or injured person, consider those who can only hope to see the light of tomorrow. We don’t all want to give up that easily.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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