“For months, I woke up hoping this would be the day I would realize I’ve been in a dream this entire time, and none of these traumatizing events really happened. That I didn’t wake up paralyzed from the neck down, I didn’t have tubes down my throat, I didn’t go into septic shock, I didn’t have pneumonia and I didn’t have MRSA in my lungs. But it did happen, and there was no running from it. Guillian Barre Syndrome creeped into my life like a thief in the night.
Early one February morning in 2018 I was leaving the grocery store with some bags and after coming home and putting the bags down I noticed my fingers were numb, I blamed it on the cold weather. Then I couldn’t sleep at night, I was having random feelings of static and rug burn across my back and legs. My right leg became so weak I could barely walk. I started missing classes and the spring semester had just begun.
I decided to see a neurologist who thought it could be Fibromyalgia. He prescribed gabapentin and that was it. The pain became more unbearable and I decided to go see my primary doctor to no avail. I then went to see a Rheumatologist who wasn’t too nice at all! Next came the emergency room at Kings County Hospital in Brooklyn, NY where I was given a cane to walk and told I had to make an appointment to see a neurologist.
I decided I was incapable of taking care of myself and I sent my mom a voice note on whatsapp asking if I can stay with her in the Bronx for a while. She said yes and quickly noticed I was slurring, as if I had a stroke. No one around me realized, but she did instantly, which is why I say she saved my life, more than once.
I couldn’t travel so my father drove and got me and I couldn’t get into his van. I had to stay on my step outside and he pulled up on the sidewalk to make it easier for me to get in. My right leg was just that weak. Once I arrived in the Bronx my mom decided to take me to the Albert Einstein Hospital emergency room. I was against it at first, I thought I just needed to give the gabapentin some time to kick in. But as the saying goes, mother knows best. After struggling to get out of the vehicle, my mom held me by my right side and then boom! I was on my way down crying ‘mom’ as I hit the floor.
I was admitted February, 18,2018 and a few days later I was in my hospital bed and my mother was by my side and I said to her ‘Mommy my chest feels funny.’
Those were the last words she would hear me say for a while. She called my nurse and the next thing I remember is waking up with tubes down my throat, unable to move or feel my legs and barely able to use my hands. I didn’t know what was happening and the doctors didn’t know either. I had to communicate with my family through a word board. They would hold it up and I would have to point at letters and phrases to get my message across. One day I overheard a doctor telling my mom that after being intubated not once but twice, the next step would be a tracheotomy and my mom said, ‘what if that doesn’t work?’ I took her phone and I typed, ‘Pull the plug.’ She cried and cried, and I remember hearing her say ‘I’m not gonna let you die.’
She didn’t. She visited me every day before work and on her days off. I would communicate with her through the word board until the muscle weakness spread to my entire upper body causing full paralysis. Then all I could do was look and listen to her and anyone who visited. They would talk and I’d respond in my head hoping maybe we’d realize we’re all telepathic and I didn’t need to speak out loud for them to understand me. That never happened.
My life for the next few weeks consisted of staying up in the ICU, talking to a God that I myself wasn’t even sure existed. Then when the morning came I waited for the group of neurologists to do their morning rounds and make their way over to me so I can listen to what they thought was happening. I began seeing family members I wasn’t even close to. Estranged faces became familiar ones and I was just happy I wasn’t alone. I was so stressed out and the doctors kept saying I needed to sleep. How do you sleep when you’re entire life changes in the matter of days? How do you sleep when you were in your prime and everything you were working towards was taken away from you. I was 21 with my associates in English (creative writing), finishing up my junior year, working at a credit repair company, while doing an online talk show twice a week with dreams of becoming a successful singer/songwriter. All I could think about is how it’s all over. You see when you’re laying alone in the ICU with no clue what’s going to happen to you, you’re not thinking the most positive thoughts. You don’t see the recovery stage, you can’t picture walking, talking or even eating on your own again. You just think this is the end. This is how I’m leaving the Earth, with no legacy behind.
I spent two months in the hospital, I had countless tests done, I’ve had some great nurses, I’ve had some horrible nurses but through it all I had my mom. I had my trach removed on March 16thand was able to start eating on my own but due to my calcium being high I couldn’t keep food down. I remember the first meal I was able to finish, my mother’s chicken foot soup. She was overjoyed and told everyone I’d finally eaten. My taste buds weren’t the same and my appetite didn’t come back fully but I finally finished something. I weighed 185 pounds on February 18thand by April I weighed 135 pounds. My mother hated seeing me that way but she was glad I was finally able to eat on my own. I left the hospital and was admitted to the Burke acute rehabilitation hospital in Mamaroneck, NY from April 19th to May 19th. I cried when I had to leave my mom, knowing I wouldn’t see her everyday made me depressed but I was happy to finally get the rehabilitation I needed. Burke was wonderful, the therapists were kind and positive and the food was great lol. I couldn’t sit up when I got there but that quickly changed. I learned how to get in and out of my wheelchair, I learned how to brush my teeth and hold my own fork. I got to use the Rex machine which is a robot that helped me get the feel of walking again. But soon it was over and I was at home with my mom and brother helpless with no physical therapy. My mom and brother had to sit me on the commode. I had to wake my mom up whenever I had to go. I felt like a burden and again I wanted to pull the plug. I thought if I take more pills than needed then I’d put my family and myself out of this misery. What kind of life was I living? I couldn’t shower, prepare my own food or dress myself; I was useless. Then I told my friend Treasure I was having suicidal thoughts and she said ‘God gives the hardest battles to his strongest soldiers.’
That stuck with me, I was a soldier! I would not allow GBS to continue to take from me. I got myself admitted to the hospital and made them find a facility for me to go to because I needed rehab.
On June 5thI ended up at the Wayne Center for nursing and rehabilitation and guess what? My mother works there! I didn’t want to be there at first but my mom made things easy for me. She brought me food every single day. She made sure I had clothes, snacks and lots of apple juice (my favorite). I was like a little girl all over again. Her shift started at 3 p.m but she’d be in my room with my lunch and dinner by 11 a.m. She dedicated her entire life to me and my needs.
I’d tell her to stay home and she’d send my little brother with my food. She never left me out. I spent my 22nd birthday in the nursing home but I couldn’t have asked for a better day. I got my balloons with ’22’ on them. I got the pink wig I wanted lol! I got a strawberry cheesecake from Juniors thanks to my friend Aihesha who also did my makeup! I felt beautiful and loved. I couldn’t have asked for a better day. My family and friends made it the best day ever despite where I was. I knew being in the nursing home was temporary.
I was discharged on September 21st and I’ve been home ever since. I started going to Burke’s outpatient rehabilitation center on October 3rd. I had a wonderful therapist named Melissa who continued to push me to be better than who I was before Guillian Barre. She inspired me to start an Instagram blog documenting my journey. I now use my Instagram and twitter page to help others see the light at the end of the tunnel. I went from being paralyzed, to being in a wheelchair, to using a walker, a cane and now I’m walking on my own. I go to the gym to get fit and stay active since my last day of therapy was January, 28.2019. It was bittersweet saying goodbye to the place that has helped me take my life back but I know it’s time to finish this journey on my own. I’m a living testimony that after the rain there is always a rainbow.”
This story was submitted to Love What Matters by Shannika Shannel. Follow her journey here. Submit your story here. For our best love stories, subscribe to our free email newsletter.
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