In lockdown with a partner who has cystic fibrosis and is a double lung transplant survivor

Chicago, IL, USA, Allison, USian, 35, college instructor, Partnered/ No kids

General

How is the situation in your city/ country? Is there a 2nd wave yet?
We are seeing a small uptick in Chicago of cases and deaths, but it is not nearly as bad as other parts of the US. I do not think this is considered a 2nd wave yet, but we are expecting one to hit in fall 2020. 

How did the atmosphere in your country change within the last months?
A stay at home order went into effect in Chicago in mid-March 2020. I was teaching three college classes at the time, and all three moved to be 100% online. My partner is an engineer and she immediately began working from home full time as well. We are fortunate that we have reliable internet at home and that we were able to continue our jobs, paid, while working from home.

How are you and your family?
We are healthy and safe. My partner has cystic fibrosis and is a double lung transplant survivor, so she is immune-compromised. For this reason, we will continue to practice physical distancing until there is a vaccine or reliable treatment widely available. We imagine this will take another year or so. For us, physically distancing means that we are both working from home full time. We never leave the house unless we can keep a physical distance outside. For instance, we enjoy walking the dog and meeting friends in a park or yard to sit far apart and visit outside. We have our groceries and other necessities delivered, or friends help us out.

What was the biggest challenge for you within the last months?
My partner needed to be hospitalized in April (unrelated to coronavirus) and it was scary for her to be away from home during the pandemic. In the United States, the crisis is very bad. Since we do not have universal healthcare in this country, and hospitals are profit-driven businesses, many were not prepared to provide care for everyone who needed it during the peaks. We saw hospitals circulating documents saying how they would triage and decide whether to administer care to patients if there were not enough ventilators for everyone who needed them. One of the documents we saw said that people with cystic fibrosis would not receive life-saving care in the event of a shortage. As the partner of someone who has cystic fibrosis, this was enraging and distressing to me.The hospital may not think her life has value because she requires more resources to care for her, but she has value to me.The idea that people with disabilities should be left to die in a crisis when there are not enough resources is a genocidal idea, and it is rooted in eugenic thinking.

We never leave the house unless we can keep a physical distance outside.

Measures

When did you realize how serious the situation is?
In January, I saw a scientist tweet about how contagious the pandemic was. This is when I started to get really scared. It wasn’t until March that we started physically distancing from others in Chicago, because that is when the numbers started to climb in our city.

How did your government react to the crisis? Which measures/restrictions were taken first?
The federal response in the US has been a complete failure. The Trump administration is corrupt. My state governor in Illinois has seemed to be a good leader despite obstacles. Each state has been on its own. But in our state, our governor implemented a stay at home order and then a five phase reopening plan based on whether there is an increase in cases or not. If we prevent cases from increasing, we are able to open more public places.

Are you satisfied with the measures of your government? What was good/bad?
We still do not have enough tests for everyone who needs them. It takes at least a week to get the results. We have very little contract tracing. We have a mask and PPE shortage. People have lost their jobs but are getting no income or support from the government. Businesses are shutting down but have not received any support from the government. We are in an economic crisis. And we are experiencing the greatest civil unrest in our country since 1968 on racial justice issues. We need universal basic income and universal health care, but the government is failing to provide either.

What would you like to say to your government?
Stop putting money into policing, “public-private” ventures, and the deregulating the economy, and start putting money in public services like healthcare, universal pre-K, and paid sick leave and paid parental leave, and universal basic income.

Which sentence of a virologist/politician did you memorize the most?
“sort of like a cleaning” -President Trump suggesting people inject themselves with bleach to kill the virus

We are experiencing the greatest civil unrest in our country since 1968 on racial justice issues.

The Virus

Do you know anybody who was infected with COVID-19 or even died?
I know people who have been infected, but I do not know anyone who has died.

Have you already done a Coronavirus test or have you been in quarantine?
No — just physically distancing at home since March 11.

Are you afraid of getting infected with the Coronavirus?
Yes. If I become infected and in turn infect my partner, it could be deadly to her.

If I become infected and in turn infect my partner, it could be deadly to her.

The lockdown

How long is/was your lockdown and what was allowed/what wasn´t?
I honestly cannot remember all the specifics. I believe our lockdown lasted about a month, followed by various phases of reopening the public.

Did you spend the lockdown time with somebody and what did you do during this time?
My partner and I are still “in lockdown”, although the rest of our city has started to open up. We spend it at home with our dog. Initially we were afraid to even go outside. We spent the time working from home, reading the news, and trying to do some projects at home to stay busy. I sewed 750 fabric masks and a handful of scrub caps because of the shortage of personal protective equipment in our country.

What did you miss the most during the lockdown? What helped you?
I miss being able to see my family (parents and siblings). They live in other states and we cannot travel. One thing that has helped me is video chatting.

I sewed 750 fabric masks and a handful of scrub caps.

Changes

How did your work situation change within the last months (shorter hours, working from home, etc.)
I went from teaching three college classes in person to teaching from home over video chat.

How did your social life (relationship/friendships/dating) change due to the Corona crisis?
I have seen fewer friends which is typical now that we are physically distancing. Some of my friendships have been strained because we cannot see each other in person and do not stay in touch otherwise. Some of my friendships have been strengthened by more communication than we used to have. I have been lucky that a handful of friends have offered to help pick up groceries for us or meet us for physically distant hang-outs so that we can still be in community together.

What impact has the Corona crisis on your financial situation?
We are very fortunate in our household that both my partner and I have continued to be able to work from home, so we have not seen much of an impact. There have been a couple months where our expenses actually went down because we are not paying the costs to commute to work. We have each had some insecurity in our jobs as our institutions have tried to figure out whether they can continue to pay everyone in our departments, but so far we have continued to have full-time work.

Social distancing: How does your daily life look like at the moment?
I am still physically distancing. I stay home all day. I wake up, make breakfast, work at my desk for a few hours, water the plants, work at my desk a while longer, walk the dog, work on a project (like a sewing project or a garden project), make dinner, read, and go to bed. It’s the same every day.

I stay home all day.

Perception

Who are to your opinion the heroes of this crisis?
I have been very inspired by the Black Lives Matter movement in the United States and specifically, the BLM chapter in Chicago which has organized a wide-spread mutual aid network to deliver food and other resources to people in poverty during this time. I am also, of course, grateful for healthcare providers, nurses, and physicians, but I do not see them as “heroes” per se. I see them as workers, who we as a society have failed. They are in harms way, but it doesn’t have to be like that. They are sacrificing so much because of this profit-driven healthcare system.

What did the crisis show you?
The US government under the current administration does not care if its citizens live or die.

What will you appreciate more after the crisis?
Community and mutual aid networks.

Which images will you never forget?
Refrigerated trucks with piles of dead bodies inside, parked outside of hospitals in NYC.

Which stories/incidents/experiences touched/shattered you the most?
People in NYC dying at home because there were not enough resources to take them to the hospital.

The US government does not care if its citizens live or die.

Perspective

What are you afraid of right now?
Trump being re-elected.

What gives you hope?
Mutual aid networks and Black Lives Matter movement.

Are you planning to travel within the next months?
No.

If they find a vaccine, would you take it?
I would comply with whatever recommendations my partner’s healthcare team makes.

What can we all learn from this crisis?
Abolish capitalism.

If you could give 2020 a headline, what would it be?
Capitalism is the Disease.

Capitalism is the Disease.