Life Changing Illness: My Survival Story From Guillain-Barre Syndrome
I don't talk about my disability much, but with the Guillain-Barre/CIDP fundraiser coming up, I decided it was time. In 1999, I began experiencing numbness and tingling in my feet, legs, arms, and hands. I worked as a medical transcriptionist and started to have trouble pushing the foot pedal and typing. I ignored the symptoms, at first, because they were so bizarre. I thought they would go away with rest, but as time went on, they rapidly increased in severity until walking, driving, and daily life activities became difficult. I made an appointment with my doctor who thought it was psoriatic arthritis, but I tested negative. I was referred to a neurosurgeon who looked for a brain tumor, but nothing. At this point, I couldn't drive or walk unassisted. My life was rapidly declining with no answers and I had two small children to raise.
My mother showed up one evening, said she'd been praying, and asked if I'd let her take me to the emergency room because, "God told her to take me". I thought the trip would prove pointless, but humored my mother, and arrived at the hospital with her help. While lying on a hospital bed, with no answers because none of the doctors knew what to do, a nurse walked in and said, "Dr. Ongkiko, happens to be here tonight. He's our neurologist and thinks he knows what is wrong with you." I had already seen a neurologist, but went along with the recommendation. Five minutes later, a short, Asian man walked in my room with a bright smile. He asked me to try to walk, examined me, and immediately said, "I know what the problem is," in his thick accent. "You have Guillain-Barre, Mrs. Harris."
"What is that?" The question was an immediate response spoken from a young woman who was dying. I'd worked in the hospital all my life and never heard of that disease. Dr. Ongkiko went on to explain the disorder, how it sets up in the plasma of the blood, and how it would end my life if left untreated. He immediately scheduled me for a spinal tap to confirm the diagnosis. Guillain-Barre is a virus that can be detected in the spinal fluid. Nervous, and scared out of my mind, I was transferred to a surgical suite. The funniest thing happened during that procedure. Dr. Ongkiko sang, "You are so Beautiful," the entire time he worked on me in his best heavily Asian-accented voice. I remember smiling while lying on my side, completely relaxed, and the nurses all giggling while Dr. Ongkiko extracted the spinal fluid.
One day later, the hospital called with the results confirming my diagnosis of Guillain-Barre Syndrome. ICU became my home for two weeks while I underwent plasmapheresis, or plasma exchange, by transfusion experts. My husband slept on the couch because he worked midnights while family cared for my children. The port placed in my neck was uncomfortable and sore, the steroids kept me wired, and still my symptoms did not go away. Nurses repeatedly checked my reflexes and made sure my breathing stayed healthy because Guillain-Barre leaves a lot of its victims intubated. The disease ascends from the feet upward causing nerve damage and paralyzation. I was lucky mine was caught in time.
I left the hospital with an eye droop, and still numb. Dr. Ongkiko ordered foot-drop braces to help me walk. He said I had the chronic form, lucky me! I went through aquatic, physical and occupational therapy to learn how to function again. I did not drive for two years, until I couldn't stand it anymore, and climbed in my husband's truck one day. He rode with me while I relearned how to drive. During this period, someone suggested I apply for Social Security Disability. I had no idea I could apply for any kind of financial assistance, but I was approved on the spot, and thank goodness, because I could not work full-time anymore as my livelihood was taken by this disease. At this point, I was only 29-years-old. It seems like a lifetime ago!
I never did medical transcription again, but I did go back to college with the help of Vocational Rehabilitation Services, and ended up working part-time, back in the hospital, as an office coordinator. After numerous falls on the job, one on my own patio that did significant damage to my back, I finally made the decision to end my career working out of the home and started writing romance. I am not a best-seller yet, but I want to be, and maybe that will happen one day with determination and hard work. I was not raised to be a quitter! I will fight the nerve damage and muscle wasting this disease did to my body until the day I die. I refuse to quit and I am living proof you can be productive with a disability!
My life altered dramatically, but I found a way to work around my disability. Do I still have numbness? Yes. Do I have pain? Absolutely, all the time. There are certain medications I cannot function without. There are good days and bad days. There are times when I want to scream and throw my braces in the trash, but what good would that do? I remind myself daily there are people in worse shape than I am. With my family's support, I realized it's okay, I can still be productive, and enjoy life. My husband stood by my side through the entire ordeal and still encourages me. Some people say he was too hard the way he pushed, but honestly, I needed that more than anything or I wouldn't be where I am today. My kids grew up with a mom who couldn't run with them, but they never complained. Both of my children matured into beautiful adults with compassion for those with disabilities. My son has helped me off the floor many times and my daughter will rip the head off of anyone who looks at me funny...LOL Do you know how much those things mean to someone like me?
There is hope after a devastating disease like Guillain-Barre syndrome. You can be productive and you can find a way to love life again. Never give up. Be thankful for the doctors, the organizations available to help, and the support system in your life! Know that there are people out there fighting horrible diseases every single day. Explore those things that bring you happiness. I know it's hard, but it's possible. I've always been told that attitude is 50% and now I'm a believer. If I can do it, so can you!
Just for you believers in miracles and prayers: I later learned Dr. Ongkiko was first in line to serve the President of the United States for neurological conditions, neurosurgery, and disorders. Isn't it funny that my Mom shows up saying God told her to take me to the Emergency Room, and Dr. Ongkiko just happened to be there? He knew exactly what to do and made it happen in a few hours. It was eight o'clock in the evening. Dr. Ongkiko has since retired, but I often think of him, not just for his intelligence, but for his kindness.
On January 18, 2020, all royalties from the sale of my books will go to the GBS/CIDP Foundation. Please support the victims of this disease and the work being done by the Foundation. Take a look at their website and see for yourself.
If you don't want to buy a book, here's the link to the donation site! Thanks so much for your support!