There have been several articles in the news lately about the experiences of people who have been forced to endure quarantine or social isolation due to the coronavirus.
Many other people are worried about having to stay at home for a couple of weeks, without access to their regular activities, because they have never had to think about what it’s like, but some of us (indeed millions around the world) have been forced to stay confined and isolated, sometimes for most of our lives! Our stories are seldom told, and when they are told, they’re often dismissed as anomalies and quickly forgotten.
When I saw the following articles, I felt the need to add a different perspective.
CBC – February 9, 2020:
‘Walls closing in’: Surviving quarantine on a luxury cruise ship
Long-term effects can include nightmares and flashbacks, expert says
…”We’re not in jail, but it sort of feels like it,” Clement said from inside her suite.
“My husband and I are starting to feel the walls closing in.”
This is the Diamond Princess, a luxury ship, now a massive floating quarantine site, where passengers will remain confined to their rooms for two weeks.”…
(If they had severe MCS/ES, they’d be housebound for years, perhaps the rest of their lives, and far too often somewhere that doesn’t feel like a home because it isn’t safe to live in due to exposures from building materials, neighbours, or other factors that make it unsafe, and there are no vacations from this life)
…”Mentally you think you’ve got it [together]. Then you call home and you lose it. You talk to the grandkids or children and it just hits you that we’re not free to come and go.” …
(Many people with MCS/ES are unable to see family, see grandchildren grow up, or visit with friends, for years, or forever, because almost everyone in society uses products or materials that can cause serious adverse health effects)
…”If you’re quarantined at home, you don’t have to worry about contagion from other people,” he said.” …
(With MCS/ES, even at home you are subjected to exposures from neighbours and others that you have no control over – pesticides, laundry products, diesel fumes, air “fresheners”, colognes and cleaning products, business or manufacturing emissions, contaminated packaging on deliveries, etc. Those fumes do not respect property lines)
…”Canadian officials have said mental health services will be provided to those who were airlifted from the key outbreak zone of Wuhan, China, now quarantined at CFB Trenton in Ontario.
(Wonderful! This is another service that is seldom available to people who develop more severe MCS/ES as the profession remains inaccessible and/or unfamiliar, and cannot offer helpful or relevant assistance)
Health Minister Patty Hajdu has said the evacuees experienced a “tremendous amount of stress,” anxiety and boredom during the lockdown in Wuhan. Many have been separated from their children or had to leave loved ones behind.
And while social interaction will be limited on the military base, officials are taking steps to keep people occupied, including setting up play centres for kids.” …
(It’s very good that these people are being helped, and provided with services, instead of abandoned to fend for themselves like people with MCS/ES and other environmental disabilities are, but why the discrepancy of care?)
…”Room cleaning and laundry service has ceased, with few supplies available to passengers, says Clement, who has been washing her clothes in the sink.” …
(People with MCS/ES cannot use shared laundry machines, or find cleaning services that don’t use toxic products or have people who aren’t contaminated with toxic products… Some of us have been without vacuum cleaners or laundry machines for years, as new machines emit toxic fumes too)
…”For now, Clement is trying to remain positive, and reminding herself that she’s one of the lucky ones. Not everyone on board has access to a balcony — some don’t even have a window.” …
(Many people with MCS/ES can’t go outside or open windows or get a/c in the summer, or if they do, they have to run inside and close windows without a moment’s notice, because of the above mentioned product fumes (and others) which can cause disabling, debilitating, chronic symptoms when exposures are more than momentary, and even the momentary ones can cause hours or days of pain or other effects)
For most of the people affected by the coronavirus quarantines, their situation is temporary… For those of us with MCS/ES, it’s often permanent due to the systemic accessibility barriers faced when trying to access any kind of appropriate care and basic needs…
Why the discrepancy of care?
CBC – Mar 06, 2020:
“But that time in isolation is coming to an end. According to local health officials, those who’ve spent the past two weeks under medical observation in the eastern Ontario city will finally be cleared this morning to head home.
Clement spent two weeks stuck on board the Diamond Princess — a “luxury prison,” as she previously described it — before boarding a plane chartered by the Canadian government.
By the time she leaves today, Clement said, she’ll have spent the past 30 days under some form of quarantine.
“That’s a long time to not have your freedom … to choose what you want to do or where you want to go,” she said.
“I find myself wanting to sleep a lot of it, just to make the time go fast. I keep busy with walking. I’m a walker so I listen to my music and walk the hallways when the weather’s bad outside.”
(I’ve been almost entirely housebound since around 2006, and except for a handful of times leaving the property, totally housebound with only a few minutes a day outside since 2011. I walk around my table to get a bit of exercise. I long to be able to spend time outside, to be among family and friends, to access basic services for dental and health care, to be able to find food, clothing, and appliances that don’t cause adverse effects, and to be able to exist without severe symptoms from products and materials that don’t need to be the way they are, and shouldn’t be allowed everywhere the way they are)
CBC – Mar 08, 2020:
‘It’s really good to be home’: Ontario couple return after weeks under quarantine on cruise ship
Yerex and her husband Greg were among the 700 people who contracted the novel coronavirus aboard the ship.
She remembers being confined to their cabin, only seeing other humans when the crew delivered meals.
“The staff were wearing masks. So they would knock on the door. We would all be wearing masks. We’d open the door, they’d hand us our meals, and we’d shut the door,” she recalled.
(How I’d love to be able to order food and have it delivered when I am too sick or fatigued to prepare something, but with numerous food allergies and sensitivities, and pervasive fragrance contamination, it just isn’t possible.)
She was grateful for her outside cabin that had windows and a balcony, allowing the couple to get a little bit of sunshine and fresh air.
One stint of quarantine was clearly enough for both her and her husband.
“It’s a real test of a relationship, lemme tell you,” she said.”
(A few weeks together in an unfamiliar or restricted environment can be rough on any relationship, and most relationships don’t last long when one of the partners develops MCS/ES, as the changes required are seen as burdensome, or bring home too many contamination exposures from being out in the world)
CBC – Mar 09, 2020:
Councillor Josh Matlow in isolation after contact with person who tested positive for COVID-19
… Matlow, who represents Ward 19, Toronto-St. Paul’s, announced Monday he will be in self-isolation until March 20. Dr. Eileen de Villa, Toronto’s medical officer of health, advised him to make the move, he added.
Self-isolation means staying indoors and avoiding contact with other people for 14 days.
Currently, Matlow said he is “fully isolated” from his wife and daughter. He says he has created a living space for himself in his home’s basement, where he is sleeping, and he is not eating meals with his family.
“Honestly, I’m going to have to figure it out,” Matlow said on Monday in an interview with CBC Radio’s Here and Now.
“I’m trying to set up a scenario where I can function, I can be isolated, I can be helpful and also do my work,” he said.
“I’m not going to be everywhere I would prefer to be. Meanwhile, I am going to do everything I can as an active councillor, as I normally would do, just within a very confined space. Thank goodness I have an operating phone. Ultimately… it’s a very surreal scenario to be in.” …
(Some of us shared thoughts and human rights resources with him on his fb page, asking him to be an ally when he comes out of quarantine, as his isolation is only temporary, and for some of us, it’s permanent due to the systemic accessibility barriers that he, as a City Councillor, as the ability to do something about.
Guess what happened?
Did he or his staff engage with us? No, they deleted our comments and blocked us from commenting on the page again!
The post Dear Quarantined and Socially Distanced is a much longer version of a comment that was posted on his page, but without any links)
My comment on the NPR article below:
Personal Essay: Coronavirus Lockdown Is A ‘Living Hell’
The closing line there is the zinger.
So much of the experience of the person in the article is just like another day in the life of someone with more severe MCS/ES… except the people in China still have more freedom, they can still have human contact, they can still eat, drink, and wear what is available, things people with MCS/ES dream about doing.
In this essay, a young person in the city where the new coronavirus was first discovered reflects on how China’s response has forever changed her:
As residents of Wuhan, China, my family and I are living in hell.
The city has been locked down for more than a month. Every night before falling asleep I have been confronted by an unreal feeling and many questions:
I know that coronavirus is the reason for the lockdown — but did life in Wuhan have to become a living hell?”
When someone says we can accomplish something but we must pay a price, do not rush to applaud.
One day you may become the price that is paid.
There is a saying in Chinese that has taken on new meaning in this coronavirus era:
“When the stick hits my own head, I finally understand the pain — and why some others once cried out of pain.”
Please share your stories now!
The world might finally be able to relate to just a little bit of what it’s like, and maybe more will even be willing to make the efforts to stop using the things that force us into isolation, so that we too will be able to leave quarantine.
The world needs our voices and wisdom!