Loneliness and solitude are among the worst parts of a medical journey
On hospitalization during the COVID-19 pandemic and separation from my sons
Being sick with a rare and complicated disease is terrifying, but dealing with medical issues during a pandemic is even worse. I went through the hardest time of my life during the worst of COVID-19, as I spent it mostly alone.
In September 2020, I spent nearly two months in intensive care with multiorgan failure from atypical hemolytic uremic syndrome (aHUS). My family had COVID-19 in March of that year, and my immune system fought it so well that my immune response turned against my body, nearly destroying my kidneys, liver, and uterus.
I was hospitalized in a new city where I didn’t know anyone besides co-workers. I’m estranged from most of my family, so none of them came to visit what looked to be my deathbed. I’m very close to my children’s paternal grandparents, but they couldn’t focus on comforting me; they had to care for my children.
When I was admitted to the hospital, I had no idea that it’d be the last time I’d see my children for nearly two months. When Grandma arrived, my boys yelled her name, surprised to see her. I looked at her and burst into tears.
I told her I didn’t know what was going on with my health, and she began to cry as well. My children looked at us bewildered, hugging both of us and asking what was wrong. My lead nephrologist entered the room, audibly clearing his throat. I had to go.
I squeezed my boys one last time and hugged Grandma. Then, just like that, they were gone. And I was alone.
All of my close friends lived hours away. To make matters worse, all hospitals had special visitation protocols because of COVID-19, and mine only allowed one daily visitor for two hours. So I mentally prepared myself to be alone for this journey.
Much to my surprise, my best friend of over 20 years dropped everything to be by my side. She stayed in town during the worst of my illness and visited each day for the limited two hours. Some days, the nurses would shut my door and pretend they didn’t know she was there past the two permissible hours.
These visits meant more to me then anyone will ever know as I wrestled with the solitude, the fear, the uncertainty about what was happening, the lack of contact with my children, the mom guilt of someone else caring for them, the stress of joblessness and mounting debt, the generalized lack of control, and even the betrayal of my body, which suddenly felt like a prison.
The difficult journey back
When I finally left the hospital, it was almost Halloween. My children were still three hours away. Against medical judgment, I chose to drive all the way to surprise them. But before traveling to them, I made my drive home. It was exhausting, especially since I’d nearly died that morning in dialysis because of a fluid and blood pressure mishap.
Once home, I stared at the six steps that went up to my door. I’d lost over 30% of my muscle mass at the hospital, making the roughly 4-foot ascent daunting. I’d already fallen — once simply stepping onto a curb and again in my home during an earlier release. That last time caused a liver puncture.
“Maybe this wasn’t such a good idea,” I thought. Simply lifting my foot was a slow-motion act. After planting one of them, I tried to pull myself up the stairs. My legs and arms were shaking, I felt a pain where my liver hematoma was, and I was light-headed. Nope, walking up the steps wasn’t working. So I changed gears and basically crawled up them.
Then I drove to where my kids were staying. I called their grandma, told her not to tell the kids I was coming, and parked far from the door. There in the mountains, the air was already cool and smelled like fall. I deeply inhaled and could smell wood burning in a fireplace. Orange, yellow, and brown leaves swirled around near my feet.
After parking, I called to tell her I’d arrived and asked her to film the boys’ reactions as I approached. The house had a large glass door, so she had them stand there, where they could see me approach. And the fanfare I received is one I’ll never forget.
They both looked confused when they saw me. They both screamed “Mommy?!” as though it were a statement and a question. But as they focused their gaze, they knew it was me.
“Mommy! Mama!” they said. “Are you not sick anymore?”
They were both so overwhelmed that they started crying. I didn’t realize I was crying, too, until I stepped through the door and felt hot tears roll down my cheek. They were both jumping and hugging me while Grandma told them, “Easy! Be gentle with Mommy.”
Leaving the hospital when I did was imperative. Just thinking about the unknown for hours on end was perhaps too consuming for me. The amount of solitude we experience when sick horribly affects our mental health. Interactions become much more important when you don’t know if they’ll be your last.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.