What's My Story?
Rule #3 and #4: Find a way to be fully alive in the present and engage with people around you. Not having to keep secrets from yourself, including secrets about the ways you have managed to survive. -Bessel Van Der Kolk, MD
In 2018, I spent 4 months rehabilitating from a disease that left me paralyzed from the left face, down...
When you think about any hospital experience, you try not to think of the worst. There were about 20 WebMD tabs open in my chrome app. Your anxiousness is loud in the emergency room, and the wait doesn't make it easier. For me, however, I felt overwhelmed with how fast my body shut down parts of my motor system; I could no longer lift my arm to tie my hair, keeping my head up was impossible since my neck became flaccid. The neurologist briefed me on this uncommon neurological disease after waiting the whole night for an answer as to what was happening to me. My peripheral nervous system had myelin sheath deterioration from my own immune system incorrectly flagging and attacking the wrong tissue. When I was diagnosed, I felt like time was frozen. I couldn't follow what words the doctor was trying to tell me. I lay there with my arms not lifting, my speech slurring, my eyes blurring not from tears but from distortion because I was told, "there is no cure, but symptoms are treatable." It was a sentence I couldn't digest. Not to mention I lost my ability to masticate in the next hour so I really had to change how I digested things. I couldn't comprehend what was going on. And I couldn't move. My arms had given out and were completely paralyzed from shoulder to fingertips.
The next thing that happened had to be explained to me because I lost consciousness from the lack of oxygen. My older sister, Marielle, was there that night watching me because I didn't want to be alone. The words I said when I was in a hypoxic state were the fears buried deep within my subconscious. She later told me that I was repeating myself, going on about running to avoid being late, and that I kept repeating "I'm sorry, you can kill me now." The doctors came to the decision that my diaphragm had been affected, and a breathing tube needed to be placed before the situation worsened. I was now on life support. The following week I was in a medically induced coma to stop me from fighting against the very thing that was keeping me alive. My immediate family made the necessary calls to my other family members of what went down within 2 days of my return from landing from a summer vacation. To them, I cannot imagine what image scarred them as they saw me on life support. It's not a pleasant image. My grandparents were in the same setting, both having passed away while on life support in the hospital. This is not what I imagined our family reunion would be. I woke up with a tube in my mouth, preventing me from speaking. The ICU was loud. I couldn't eat so they placed a tube that punctured through my stomach wall. Everyday I was living off milk that was controlled with parameters that gave me a certain milliliter amount dropped per hour. This is how most of my body weight was stolen from me.
(continued below...)
2018
My older sister juggled between finishing her Bachelor's and supporting me in the hospital. She's been an anchor for me as well.
2019
My family loves Disney, and it was a transition for me to experience the parks in a new way with accessibility in mind.
2020
My dad loves to take me to serene places so that we can enjoy the outdoors together.
2021
This is me spending the day at Universal Studios!
2022
I love cruising because I can be near the ocean while also stay on board a ship with a lot of accessible activities and spaces.
(First photo is in 2018, taken by my OT John Margetis, second photo is my one year anniversary in 2019) My mom sacrificed a lot for me to sleep in my own bed, to travel where I can, to see and experience new things. I am forever grateful for her patience, especially when I was adjusting to how I would need to live my life. It wasn't optimistic in the beginning. There were dark periods of time when I would find it hard to have hope that life could be any better than what I had before getting GBS. But my mom feeds my hope and gives me the support I need to still be here. I owe my life to her.
Please proceed with caution, the content below includes images of a hospital setting.
After 2 weeks and a new tube directly in my throat, I was able to move a step down. This meant that I was no longer considered to receive critical care. It was a step in the right direction! Eventually, I took my first steps on a treadmill that was attached to a harness, where physical and occupational therapists, along with their assistants and students, guided me to walk for the first time in a month. My family members took turns watching me overnight in the hospital because I was afraid of being alone. Going to sleep was challenging because I was never comfortable enough to rest. I relied on the sedatives given to me to make me fall asleep. I had two types of sedatives through IV drip to keep me from fighting sleep. Since I was receiving sedatives around the clock I had withdrawal syndrome after moving to a less intensive hospital unit. It was scary because I didn't know why my body was shaking so much. My best friends from high school were so kind that they changed my icepacks since I had cold sweats.
I was here for 2 months, in the same room with the same schedule and the same meal which I couldn't taste. I had dreams that were shaped with the hospital room as a part of the setting. I had to stay in my room a lot because I was still on the ventilator that was connected to the wall. Also, I didn't feel strong enough to walk without the harness. I mean it was relatively easy for me to stay alive. It was more like just supporting me to stay alive. I was given my food through a tube and my air through a tube and my entertainment through YouTube. I still hadn't had a conversation with anyone in the last 2 months. That was until I tried this valve that gave me the ability to speak. It felt good how I was no longer left with my thoughts. I also now had the chance to talk to the wonderful medical professionals that were working around the clock to keep me well and entertained. John Margetis OTD, my Occupational Therapist, and Erin Fitzgerald DPT, my Physical Therapist, were two instruments of the symphony that kept me engaged. Having them by my side, along with their colleagues and students, kept my mind curious as I soaked up as much information as I could from being in an educational environment such as Keck Hospital of USC. I even joked with them that I was completing a summer internship at USC!
Finally, I was transferred to a rehabilitation center where I spent 6 weeks working on strengthening my body. I was now able to walk and I spent many hours talking because I didn't get the chance to do so three months prior. After 5 months of sleeping in hospital beds, I reached my own bed. I did a hospital tour in the Fall of 2018 basically. Many other events happened and I'm working on sharing those moments on this website. I consider this my personal journal to document whenever I have recollections of the time I spent in the hospital or the small moments I learn some new perspective of my life.
This experience has taught me a lot about myself that I didn't bother to explore when I was capable. I wasn't too perplexed that I couldn't figure out why my body decided to give out on itself because I knew I was going 100 mph in a body that could only handle so much. Mentally my mind was a stallion but my physical body needed a rest. Despite having my world flipped upside down, I gained wisdom to live each day with hope that I will get better in the next. I believe this experience made me comfortable to be vulnerable and to feel any and all emotions of life. If you're still reading at the end of this I want to thank you for taking the time to be interested in me telling my side of my story. Its time... Its been time. My life is now and I want to live it as it is.
