Concerns about care during pandemic shortens stay abroad

This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. Some are first-person accounts, others are written by IDF staff. If you have a story you’d like to share, email us at stories@primaryimmune.org.

In this Stories blog, Harper Spero discusses how the pandemic has altered her life. Harper, who has Hyper IgE Syndrome, is a business coach and creator and host of the podcast “Made Visible,” which focuses on conversations with people who have illnesses, such as PI, not always apparent from a person’s physical appearance. You can learn more about her at harperspero.com.

Six weeks into my stay in Tel Aviv, I was starting to get the sense that this coronavirus thing was something to take seriously. It was my thirteenth time in Israel in 12 years. I’d spent the last few winters there escaping the New York cold and embracing a city on the Mediterranean Sea.

Israelis were social distancing, stocking up their cabinets and fridges, and expressing concern. If you don’t have any Israelis in your life, this is not normal for them. They are usually laid back, don’t follow directions, and are used to fear being a part of their daily lives. Suddenly they were canceling their plans to Europe for Passover, which was over a month away.

I was enjoying sunsets on the beach, running my business, and hosting my podcast remotely, while spending time with my friends and their kids. Although I hadn’t met a specific guy that I thought would become anyone significant in my life, I was dating and that was more than I could say about my New York life. I feel a sense of calm and carefreeness in Tel Aviv that I don’t usually have in New York.

And then, late on a Saturday night, my mom called from New York City to tell me that her friend, Robin, sent her an article saying they were closing the borders in Israel. I frantically Googled.

“What? Where’d you see that?” I asked, “I don’t see that anywhere.”

She told me she’d email me. I stayed on the phone until I received the article.

“It says they’re limiting the flights,” I said.

Was she that antsy to get me home that she didn’t think I’d realize the article Robin sent wasn’t saying they closed the borders? Either way, my mom scared me enough that I immediately called the airline to move my flight. I was planning on staying in Tel Aviv for a few weeks longer, now I was rushing to get home as quickly as possible.

I called El Al to change my flight. This is the smart decision, right? The media keeps talking about the immunocompromised being the ones at high risk. That’s me, diagnosed with a rare primary immunodeficiency called Hyper IgE Syndrome at age 10, with lung issues since I was 27. A chronic cough and difficulty breathing are part of my regular life.

I started to get worried I’d be stuck, far away from my family and my core medical team. My mind started spiraling to every worst case scenario. If I got stuck in Tel Aviv, I would have to change Airbnb’s because the owners were coming back. I’d have to find a new place to stay not knowing whether it was virus-free. That was concerning.

I started panicking thinking about what if something happened with my health and I didn’t have access to my medical team let alone an English speaking doctor. My condition is so rare that very few doctors know anything about it. I wanted my doctor. How would I get more of my daily medications that I rely on? How long will this last? I think these drugs keep my lung issues at bay, but who knows, could I live without them?

Ninety minutes later and I finally got someone on the line to change my flight to the following day. I sent many of my friends in Tel Aviv messages on WhatsApp informing them I was leaving, trying to coordinate seeing as many of them as possible. I saw my last sunset on the beach, ate my favorite dark chocolate gelato from Otello, and anxiously packed my bags.

My friend and her mom drove me to the airport because they were afraid of what I’d be exposed to in a taxi or the train. We hugged each other tightly — not knowing when we’d see each other next. I didn’t know at the time how long it would be until I hugged someone like that again.

With my mask and gloves on, I wiped down every inch of my seat on the airplane. The religious man behind me chuckled at how seriously I was taking things. I put my used wipes into a Ziploc bag and handed it to the flight attendant. All I wanted was to land in New York safely and coronavirus-free. It was hard to process how I had just pulled myself out of my happy place to return to New York because of a pandemic.

Five minutes after I got off the plane, I arrived at the baggage claim, where I picked up my luggage with a gloved hand and disinfected it with a wipe. I couldn’t believe how little they did to screen passengers in the airport — I had been able to cruise right through security.

My parents picked me up at the airport for the first time in my life. They hugged me but not as tightly as you would expect after I’d been gone so long — I wondered if they were concerned I picked up the virus on the plane. Or in Israel.

“Harp, I’m so glad you’re home, how was the flight? Did you sleep?” they asked.

I had mixed emotions. I was happy to be back with them but disappointed to be cutting my stay in Tel Aviv short because of coronavirus.

We drove to the Hamptons where we’ve been ever since. And we’ll be here indefinitely.

I didn’t know how bad things were going to get. I guess nobody did. I didn’t know that New York was going to be the epicenter of this pandemic — maybe if I did, I would have stayed in Tel Aviv.

The week before I flew back to New York, I emailed my two main doctors to get their opinions on me staying in Tel Aviv. One doctor said she had no issue with me staying because, “Israel knows how to handle emergencies better than the U.S.” I was surprised to hear that answer. After a week in New York, I wondered if maybe I should have listened to her.

I’ve been socially isolating for 44 days now. Yes, I’m counting. That means I’ve been with only my parents, outside the city, not going to stores or ordering dinner or interacting with other people. We’ll go for a daily walk in the neighborhood. We have talked to a few neighbors we’ve never met before after three years of owning this house. We stay more than 15 feet apart from them and yet I still find myself backing away. “Think they’ll be real friends or just corona friends?” my dad asks. 

We’ve gone to the beach a few times but too often there are too many people there so my heart starts racing and I demand we leave. We don’t touch a single thing along the way aside from our own door of the house and the car. We wash our hands constantly and I have Purell in my pocket when we’re outside. Our yoga teacher went grocery shopping for us and my aunt has dropped off some essentials including homemade matzo ball soup for Passover.

We’ve ordered lots of non-perishable foods online. Every box that arrives sits in the garage for a minimum of 48 hours. My parents wear gloves to open them and then immediately wash every single item in the box. They open the front door with a Clorox wipe, don’t touch anything, strip down and shower. Their clothes immediately go into the laundry. We’re all in this together and have agreed to take strict measures.

Sometimes it feels crazy. Sometimes it feels over the top and aggressive. Sometimes it feels like: could we really get it after being this cautious? The answer is yes. And so, I’m okay if I’m being over the top and crazy because it’s better than getting the virus.