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Fear, love and loneliness: Being alone in a hospital

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When I was 5 years old, I had to have spine surgery. While I was too young to truly understand the danger of undertaking an experimental surgery on my spinal cord, I was nevertheless terrified. I was terrified because at our pre-op appointment the nurse had explained that I would be taken into a room, given some medicine to make me sleepy and then wake up a little while later — after which I would need to stay very still and would not walk for a month. But it wasn’t the anesthesia that scared me, nor the prospect of a month in bed. It was the idea of going somewhere in a hospital without my mom. 

At this point I had done enough tests and procedures to know that hospitals were painful places where tubes and needles were put where they shouldn’t be and “a pinch” was never just a pinch. My mom’s closeness comforted me, slowed my racing heart and lessened the pain. The idea of being alone in the hospital, even just for a few minutes before the surgery, was my worst fear. When we got to the hospital I was hysterical, crying, screaming, clutching my mom for dear life. When the surgeon asked why I was so afraid I replied, “I don’t want to go without her.” He asked if I would behave if she could come into the OR with us until I was asleep. I said yes, and instantly my fear dissipated. As I was rolled into the OR, I felt calm and safe because my mom was with me and she meant safety. Many years have passed, and I have had countless procedures and tests since that day, but still my mom has been there for every one of them. I was in the hospital many times, but I was never alone.

So, even now, when I go to the infusion clinic for my bimonthly infusions, my mom comes with me. They aren’t scary, nor particularly painful — the side effects of wiping out my immune system aside — but she comes to keep me company, to make sure everything goes smoothly, and to make sure I’m not alone. But everything is different now. With COVID-19 running rampant through the world, hospitals have changed. Visitors are now almost universally banned, and certainly for low-risk procedures such as a non-oncological infusion. So I will be going to the clinic tomorrow alone. After donning my mask and getting my temperature checked I will walk through the doors of the clinic alone. I will take the elevator of the normally bustling building alone — as all outpatient appointments that can be moved to telemedicine have been moved — and I will go into the infusion center alone. I will sit in the large squishy chair and listen to music or watch a show instead of chatting with my mom as I normally do. And when they put the medicine into my vein, I will look out the window at the highway and not my mother’s face. And I’m not ashamed to say that I am a little bit afraid. Not because I think anything bad will happen. Nor because I fear catching the virus. Simply because we are a team, and when I go to the hospital she goes with me. 

This might seem overly myopic. You might be asking, how is this an op-ed? It’s an op-ed because my situation is minor but so many people’s situations are not. I’ll be at Stanford Hospital for an hour or so, not in any great pain, and with no fear of death. But hundreds of thousands of people are not so lucky. They are inpatients fighting for their lives. They are in excruciating pain. They fear they won’t go home or, even worse, they know they won’t. And in most cases, they are alone. Or at least without their loved ones. This is the way it has to be. I agree 100% with the doctors and nurses who set this protocol. And yet, my heart is shattered thinking about all the people suffering, worrying and dying alone. The doctors and nurses are heroic. They are getting tablets and phones in to let patients see their loved ones. They are truly champions. But I know that nothing can come close to the comfort offered by the people you love most being close, holding your hand, smiling at you, lying in bed with you. For as long as I can remember my greatest fear has been being alone in that hospital room, and now it is a reality for so many. 

So my takeaway is this, my advice is simple, almost a plea really. Tell the people you love that you love them. Hug them. Smile at them. Let them know how important they are. No one knows how long this virus will last or what its toll will be. As an immunosuppressed person I know I am at risk. With older parents I know they are at risk. And despite all the best precautions we don’t know what the future holds. So if you can take the time call your friends, your family, your friends who are your family. If you can’t be with them tell them how much they matter to you. And to the people you love that you are sheltering with, hug them or sit next to them or do whatever makes you feel close and connected. Because at the end of the day, love is all we have and its power against pain and fear in the face of illness is stronger than anything else I have ever experienced.   

Contact Jen Ehrlich at Jene91 ‘at’ stanford.edu.

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