Interviewed June 2, 2020. Interview edited for clarity and length.
Sam, 28, is an attorney in consulting with recruiters, which is a subset of employment law. She’s an active PRUMC member and volunteer.
What has the daily experience of the pandemic been like for you? Are you working at home?
I was born without a functioning immune system, so this pandemic has been different for me than for other people you’re talking to, I would assume.
Wait, no immune system?! So what exactly does that mean for you during this time?
Everybody remembers “the boy in the bubble”, right? I have one of the more moderate forms of that. But I’ve never had to go into complete isolation until now, because my treatment protocol had allowed me to live a pretty normal life. I’ve been receiving donor antibodies for 12 or 13 years. But this virus has caused me to experience my diagnosis in a whole new light.
When the virus first flared up here, I had a period of about 30 days when my doctors had no idea how people with my condition would react to it, so absolutely nobody could be in my house and I could not go out. I was completely isolated, in my house, by myself. My boyfriend, Zack, who lives here on weekends, was allowed only to come here on Saturday evenings and sit out on the far edge of my back porch and have dinner. That was my only face-to-face human contact. Usually, I’m the person who throws all the parties and people are in and out of my house all week. So I went from having friends and family over all the time, to having nobody. And I understood what living in a bubble really feels like.
At Easter the restriction was eased to allow Zack to come home, and I could have a few people out on my patio at a distance. I was told not to expect to go inside anywhere until after my next doctor’s appointment, in early August. No grocery shopping. Nothing. For the first six weeks of isolation I had everything delivered. At that point I realized I had to start driving for my mental health, so I started doing curbside pick-up of some things.
This pandemic would probably be the easiest transition for someone like me. I’ve always had hand sanitizer within reach and used it all the time. It’s second nature to not touch my face, to wash my hands. During flu season, I have a dispenser at my front door with hand sanitizer and if I’m in a large crowd I wear a mask. I’m so used to living in a world where I have to be hyper-vigilant, not that it stopped me from doing anything before. This is the first time people around me are having the same experience. It has been interesting to watch everyone else as they see the world through my lens and adapt their life to what is my normal.
What about your work process? What was that like for you before versus now?
The company I work for went completely remote about 15 years ago, except for the occasional in-person meeting, so my work day didn’t really change with this. A bedroom in my house has been my office for years, and I was already used to having meetings over Zoom. That amount of continuity in my routine has been the saving grace for me in this.
But it has taken time to wrap my head around the bigger changes. On March 7th, I flew home from a business trip, and I was supposed to leave on another one, to New Orleans, on March 10th. But I’d started to feel uncomfortable about flying and decided to drive. Then before I left, my grandmother in Mobile texted me and asked if I was already there. She said, “Do you know what’s happening with the virus in New Orleans? You do not need to go.” I cancelled and did a videoconference. And sure enough, a colleague called about a month after the meeting, which she actually attended, and said there were positive cases and they’d all had to quarantine afterward. Grandmother’s intuition! I can’t thank her enough. So it’s all been a process of figuring out how I can keep within my boundaries and still live my life.
Has this changed the conversation about the virus among the people who know you?
Yes. Now everybody understands the vocabulary. Antibody treatment using plasma, immunoglobulin – those are things I’ve been talking about all my life. I’m on plasma treatment once a week so that I can have all of the common antibodies that your body makes. I rely on donors so that I can have that. When they talk about having survivors of the virus donating plasma, a lot of people who know me are saying, “Oh, so this is what you do all the time.” I’ve always been a pretty open book, but this pandemic has allowed me to talk about my condition more naturally. I don’t have to be guarded and sort of reference a blood disorder and brush past it. I can say, “I’d love to see you, but here’s what’s going on.”
It’s also allowed me to talk more easily about my condition with Zack. Years ago, I had a couple of infections where doctors came in and said to my parents, “We’re giving last resort medication, and you should call in clergy.” I’ve had recovery periods at home for weeks on end. I don’t talk about those much. I lived through them, and my parents lived through them. This virus situation has allowed me to open up and have in-depth discussions with Zack about my diagnosis and treatment, so he could learn it all without the emotion of me having had a flare-up that’s caused a major issue. That’s also important for the future, when he will be the one making decisions instead of my parents.
Speaking of your parents, they must be quite strong to have managed this with you and helped you build the perspective you have.
I have to give a lot of credit to my parents and my siblings. For 28 years in my family, there has not been a difference between me and my sisters. I’m brown-haired, blue-eyed, immune-deficient. We just went along. It’s so ingrained, so natural to me. There was never a “poor Sam”; it was “Okay, we’ve got to deal with this, and you’ve got unique things we have to address with you just as your sisters have unique things. This is what you’ve been given and have to live with. So go and live. We’re going to give you all the tools we can.”
You mentioned restrictions until your next doctor’s appointment in early August. Why August? What do you expect to happen?
It’s a six-month reevaluation. They will look at the community spread at that point and figure out what that means for me. At this point [early June], they’re letting me be a little more open. I can take a walk. I can visit my parents out in their yard or see Zack’s parents in their yard. I can see a few very close friends, outside, with everyone more than six feet away from me.
One of the things I never realized before my COVID restrictions was how much I appreciated being able to pick out my own produce! We’ve started going to a neighborhood farmer’s stand on Saturday morning. Zack and I stand on the sidewalk, away from everybody, and I point to what I want. Then he goes over with his mask and gets the items and interacts with the farmer and so forth. So I’m within all of the boundaries that I’ve been given, and I have the freedom to pick out my produce! Little things like that help me say, “Okay, these are the limitations I’ve been given. I’m not going to be able to just bounce back into the world like everyone else. I know that I’m doing all of this so that I can stay healthy, and once we get on the other side of this I can go back in.”
Have you discovered things that will change the way you go forward?
It’s made me evaluate what brings me joy and see that I need to find ways to still be able to do that within my reality now. I’m having my patio completely redone in the midst of this, because that doesn’t require anybody in my house to do the work and it allows me to get back to being the host and having people gathered around my table. It will just be a patio table instead of a dining room table!
I think the biggest takeaway, what I wish I could have other people realize, is how many of us there are who could be more severely affected by this. I’ve seen so many people on social media or in my work world saying things like, “It’s only a problem if you’re elderly, and those people are staying home anyway.” I wonder how people who dismiss the virus on work calls would change their opinion if they realized the person they were talking to was immune compromised. I didn’t have a choice in this. I won the genetic lottery, and it showed up in my generation of the family line. It’s brought me more good than it ever took away.
Maybe when I reenter the world, it’s going to be a more accommodative world to me. I think people are going to be more conscious about staying home when they’re sick. Maybe they’ll see that the person who needs them to understand all of this could be the person sitting next to them in church. At least I hope so. I try to find the silver lining of things. And I’m very glad to use my voice to talk about invisible illness.