Within A Week, An Autoimmune Disease Had My Healthy Husband On A Ventilator And Paralyzed
I’ve never been a fan of Valentine’s Day. In my mind, it’s primarily a commercial opportunity. A way to sell chocolates, flowers, and stuffed animals. So when love suddenly became more real than ever on Valentine’s Day in 2019, I couldn’t ignore the irony.
February 14, 2019 was the day my husband was unexpectedly plucked from our lives and emergently flown to a tertiary care hospital three hours from our home and our four young children. It was the day he was unexpectedly diagnosed with a rare auto-immune disorder known as Guillain-Barré Syndrome.
The last thing we could have imagined was this whiplash health crisis. We were young and healthy. Our focus was on raising our children, three boys and an eight-month-old baby girl. We were busy juggling our professional lives with school drop-offs, feedings, extracurricular activities, and bedtime stories. Mom-guilt was all too familiar as I grasped for balance. Some days, the best I could do was close my office door and turn on my breast pump.
Guillain-Barré Syndrome was something I hadn’t heard of prior to diagnosis. I quickly learned that it’s a condition that occurs randomly when the body mistakenly attacks its own nerves instead of the intended target. This attack results in progressive paralysis of the body with considerable pain, until it subsides and the nerves begin to heal. The most threatening part of Guillain-Barré Syndrome is the progression into the chest and diaphragm, which can weaken the muscles enough to endanger breathing.
Five excruciating days after he was admitted to the hospital, my husband was in the ICU, a quadriplegic on a ventilator. He had no way to speak and was in unimaginable pain. The physician explained that his case was so severe that the paralysis could last for weeks, months… or even longer. We were living a nightmare.
Our children were safe at home with their grandparents, so I threw myself into caregiving. My husband had no way to communicate due to the ventilator, so I became his voice. He couldn’t move, so I did my best to make him comfortable. His autonomic system was not regulating properly, so I packed him with ice when he was hot and covered him in blankets when he was cold. When he even lost the ability to control his facial muscles, preventing him from blinking his eyes and instead leaving them wide open, I carefully taped his eyelids shut.
Six weeks later, my husband continued to hover just above death, no recovery in sight. I made the difficult decision to transfer him to a rehabilitation hospital seven hours away from our home, a regional center of excellence. I had to return to my children, hat in hand. It was time for me to learn how to be a strong single mother in the midst of crisis. Our children needed me. I lifted my chin and did my best to be everything for everybody. Moms are good at that.
My eight-year-old son was hurt. “You should have called us more to tell us what was going on,” he shared in family counseling one day in response to the feeling of abandonment. My jaw dropped. My little boy wasn’t little any more. He had been pushed beyond his age.
“You are right, Ben. I should have respected you more,” I replied through a stutter. How could I explain that it had been too painful not to be able to tell him everything would be alright?
My husband was on a ventilator for fifteen weeks before he left the Long Term Acute Care hospital for intensive inpatient physical and occupational therapy. His hospitalization lasted for nine months as he awaited muscle reactivation and then retrained himself to do everything from breathe, go to the bathroom, blink, swallow, eat, and move his body. We made the long drive to see him every weekend.
It was an incredible battle, but nearly a year later he returned home able to walk. A miracle.
The experience caused us to transform. I watched my children struggle, cope, and demonstrate flickers of wisdom while we traversed the difficult situation. I watched them grow in front of my eyes, not just in height and maturity, but in emotional dimension.
I grew up, too. When my husband was first whisked to the ICU, I cried and said, “I don’t know who I am without him.” I went on to learn just that. Out of necessity, I discovered that I was stronger than I previously thought.
The situation required me to lead my family in a new way. I became our voice. Not only did I have to speak on behalf of my husband, I had to represent his humanity and advocate for his care. I had to hold space for our children so they could accept within themselves the torrent of feelings that rushed through their hearts and minds. I had to consider long-term consequences of the illness and be prepared to pivot into our future.
I processed all of this in my CaringBridge journal, a website specifically designed to relay health journeys. Journaling helped me deal privately. Sharing our situation publicly allowed me to be vulnerable while maintaining control at the same time. It allowed me to set the narrative with clear, measured, and honest words. To frame our situation in power and hope and light. Initially, I wrote to update those who cared about my husband’s progress, but it wasn’t long until I realized that I was doing it for another reason. To explore our wholeness.
Upon my husband’s miraculous return, I continued to write. I wrote as a catharsis, a way to sort out the tangle of emotions caused by the whirlwind of trauma. I wrote to capture our life experience so our children could examine it with adult eyes someday, too. I wrote as a way to share perspective and bring my family back together.
My writing evolved into a book entitled ‘The Other Side of Us: A Memoir of Trauma, Truth, and Transformation.’ It pulls back the privacy curtain and catalogs our transition from the Before to the After of our lives. It’s a caregiver’s book. A story full of vulnerability, honesty, and revelation. It is rife with the beautiful and unexpected truths found in struggle.
It wasn’t a happy chapter in our lives, but it proves to me that what inspires deep thought and growth and perspective—while not always comfortable—is still a part of joy.