Send Me More Stories About Acute Illness
I was just about to turn 26 when I set my sights on journeying to Vietnam.
It was probably an ambitious trip for someone who’d just been paralyzed from the neck down. But then again, I’ve always tried to seize life by the throat.
Until I was diagnosed with Guillaine-Barré Syndrome (GBS)—an autoimmune disorder in which the immune system spontaneously begins attacking the autonomic muscular syndrome, leading to paralysis and sometimes death–I’d always felt a youthful sense of indestructibility. Becoming dangerously ill was something that only happened to other people, older people, less fit people, but not to me. I naïvely thought my body couldn’t break or fail.
I naïvely thought my body couldn’t break or fail. Then it did, and I found myself struggling for answers.
Then it did, and I found myself struggling for answers. As a young reporter, I worked I was working fairly stressful nine-hour days during the week but ate well, regularly went to spin class, hiked at weekends and never smoked. I sometimes enjoyed some wine with my boyfriend, but there was nothing particularly hazardous about my lifestyle. So why me? Why now?
Sarah Harvey was 25 when she was diagnosed with Guillain-Barré.
I’m usually pretty calm, even in a manic newsroom, but I found it hard to rein in my anger at being struck down in the prime of life by a mysterious autoimmune neuropathy. And it frustrated me that nobody could explain the cause. “There isn’t enough research yet to tell us why people get GBS,” my neurologist explained. There was nobody for me to direct my frustration against.
The trigger for my GBS was nothing more than a respiratory infection. For some reason my immune system malfunctioned and started attacking the nervous system, causing the nerves to become inflamed. The nerve pain felt like every cell in my body was on fire, and the morphine I was prescribed barely took the edge off. I developed hypersensitivity to the mildest touch, making even getting my blood pressure taken feel like my arm was being crushed by a vice. My body had become a prison, I could only move my neck and eyelids. I had terrifying nightmares every night.
The trip’s inception probably sprung from my understandable desire to fly away from my reality. Away from the beep of the heart monitor; from the hiss of the ventilator; from the cold white gunk I was fed through my nose-tube and from the purple bruises on my lower belly caused by my daily injections of anti-coagulant. Here, at my weakest point, I began planning my ‘great escape’ to Vietnam. And I think it might have saved my life.
Here, at my weakest point, I began planning my ‘great escape’ to Vietnam.
The day GBS almost killed me, I’d already been hospitalized for three nights. The diesease had progressed to an acute stage where paralysis was choking my diaphragm. I had to have a tracheotomy, but I was told that, even with the surgery, I still had a 20% chance of dying. And even if I survived, I’d probably spend a year in the hospital.
Seeing my boyfriend and parents so upset over my prospects had crushed my spirits. My vitals got weaker, and as they did, the nurses got quieter. Since the tracheotomy prevented me from speaking, they asked me to nod if I were religious and would like to see a priest. Was I dying? I wondered. But how could I, at 25? There was so much more I wanted, needed to achieve. I couldn’t just fade away. I wasn’t going to let myself.
Spoiler: despite almost dying of Guillain-Barré, Sara’s dream came true. She made it to Vietnam, despite lingering nerve pain and facial paralysis.
In the face of plummeting vitals, it wasn’t easy to switch my thoughts from depression to something optimistic, but I tried. GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself, remembering the cancer survivors I had read about who stressed the importance of a positive mental attitude towards recovery. My luck would hold, I assured myself: I was going to get out of this hospital, and I was going to live.
GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself… I was going to live.
So I pictured how it would feel to paddle down the Mekong Delta, to stroll along a leafy boulevard in Hanoi, to sail through Halong Bay on a wooden junk boat with a red sail, and to taste hot pho at a roadside stall.
Hours later, my vital signs started improving. My condition went from critical to serious, and then stabilized. I heard nurses and even neurologists utter the term “miracle”. “God is definitely looking out for you,” my nurse, Saffi, said, as she stroked my hand. I nodded in agreement; the only movement I could make.
My luck continued to hold, perhaps as a testament to the power of positive visualization. After I stabilized I stopped improving, but after being given two doses of intravenous immunoglobulin (which is thought to speed up recovery), I was finally was able to twitch my toes (something I still do today to remind myself how lucky I am).
I then volunteered to take part in a pioneering experiment on using a voice box with a tracheotomy in Intensive Care. Until that point, I’d communicate with nurses using an alphabet board (they’d tap each letter and I’d nod spell out what I wanted). The voice box was a huge blessing for communication. Sometimes on the hospital radio, I’d hear a song I loved and cry that I couldn’t dance. But now, at least, I could sing along, however badly.
“In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi.”
From then on, my physical therapy was intense. After the paralysis eased, I worked on strengthening the muscles that had wasted away while I was in bed. As my arms grew stronger, I learned how to pull myself into a wheelchair, and from there, I threw myself aggressively into my recovery, pushing through the residual pain from damaged nerves and wasted muscles. I progressed to a walking frame and was told I’d probably fall over but I was vigilant and refused to let that happen.
In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi. My luck still held: while my legs were stiff and I still dealt with minor nerve pain, I’d somehow escaped the chronic fatigue, nerve pain and numbness that plagues so many GBS survivors. Together, my boyfriend and I paddled canoes on the Mekong Delta, sailed on the emerald waters of Halong Bay, and tried all kinds of Vietnamese delicacies. It was the purest and most precious sense of freedom after being locked inside my own body. A freedom I’ll hold onto forever.
