The story of Mary Beth
I was hospitalized in June 2019 for an infected finger & I had developed cellulitis. I got a tetanus shot in the ER & was hospitalized for 3 days. Two weeks later, I started to feel sluggish. Yep days after that, my legs felt like rubber, my tongue felt weird, my feet & hands were tingling, and nothing (not even plain water) tasted good. My daughter took me to the ER the following day, and I was told I had sciatica & was discharged. I couldn’t walk the next day or sit down or get up on my own. I was in an incredible amount of pain & had no appetite.
My husband took me to my doctor the following day & I collapsed in her office She told him to take me to Robert Wood Johnson Hospital in New Brunswick, NJ ASAP. Although she didn’t know what I had, she knew it was neurological. Within an hour at RWJ, the ER doctors were pretty sure I had Guillain-Barre Syndrome, which is a rare neurological condition & also an autoimmune disease. Since it has a respiratory component, I was moved to the respiratory care unit & treated by both neurologists & a pulmonary specialist. I spent 8 days there & received a four day treatment of intravenous immunoglobin. I wasn’t able to eat & was hooked up to IVs. I had to undergo a lumbar puncture & nerve conduction test as well.
GBS’ effect on one’s body spreads quickly. Within days of my diagnosis, the left side of my face became paralyzed. I wasn’t able to close my left eye & was given a sleep mask to wear at night to keep it closed. I had difficulty speaking & was unable to move on my own. I had limited movement in my hands & legs, but couldn’t move myself in bed if I needed it.
I was transferred to a rehab faculty after 8 days & spent 3 weeks there. I got 3 hours of therapy daily–speech, physical & occupational. I took steps with a walker the day after I arrived in rehab & it was very emotional. I was taught how to transfer from a wheelchair into bed and how to get up by myself if needed. That was really difficult because I was so weak.
I missed 3 months of work as a result. The left side of my face had impeoved, but may always be puffy in comparison to the right side. The vision in my left eye has declined & I hope will improve. At least I can now eat with my mouth closed & drink from a cup without using a straw. I can walk & drive but noticed I get tired more easily.
I know relapses are possible & I’m living in the present for now. I’m grateful that I wasn’t affected more than I’ve been & my perspective on life is different. I have so much respect for disabled people & the challenges they face. When I used a walker, I noticed how people saw that & not me. Very sad.