The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.
Author Disclaimer: I do not identify as a disabled person. I am the daughter of one and chose the Q&A format to lift up the voices of a remarkable woman who live with Multiple Chemical Sensitivities (MCS), my mother Victoria Bestock.
Shana Bestock: How does regular life with MCS mirror social distancing measures recently enacted?
Victoria Bestock: The first two years after I was chemically poisoned in my workplace, I hardly went out of the house. I had become allergic to the world. If I did go out, it had to be with another person in case I reacted to someone’s hair products or dryer exhaust and became incapacitated. If I couldn’t find someone to go with, I couldn’t go out. I missed a lot of theater and concerts, book groups and dances. I missed my job, my students terribly. I missed the friends who didn’t want to bother getting fragrance-free products so they could spend time with me. Now once again I am spending a lot of time in my house. Not seeing people other than my husband. It’s very odd.
SB: How is this different from “regular” avoidance of people and toxic situations?
VB: I have been told by medical professionals that if I get COVID-19, I will die. I haven’t been afraid of dying if I have a chemical exposure. This is more serious. My immune system totally unprepared to cope. I’d been willing to go to classes and concerts, knowing I’d feel sick the next day, but feeling pretty confident that I’d be better in a day or two or maybe a couple of weeks if I got pneumonia. I took some chances in order to have a normal life, to see people, to do things I enjoyed. I can’t take chances now. No one but my kids will be coming to my house. I am concerned that my husband, who still goes out, does errands, buys food, could bring the virus home.
I am really scared of getting the virus and dying. I really am not OK with dying. I have too much to do still!
SB: So, what do you do to pass the time?
VB: There are stories to edit, and memoirs to write, and closets to clear out, and alpine meadows to visit at the height of flower season. But, though I am back in the house once more, talking on the phone and sending emails and not being in the presence of live people, it feels very different. My husband thinks I will have a hard time if I isolate myself for three months. Maybe so. I wasn’t this isolated with MCS. But I’ve learned to love silence and serenity in the house and sometimes find the outside world stressfully noisy. So I’m counting on that learned love of quiet to help me through.
SB: What other lessons learned from living with MCS help you during these times?
VB: I’ve developed a few new interests in the intervening years that don’t depend on contact with other people. I need to feel in control of my life. I make a lot of lists. I’m grateful for the people who I can be with.
When I was working I didn’t have time to read, and now I have all the time in the world. I read about Japanese Gardens, and I read the newspaper and the New Yorker, and books that my book group is going to discuss. I play the piano a little. I have Netflix and Amazon Prime and can see movies at home. I have so many recipes now that I won’t live long enough to make them all. Recently I’m making more interesting food, partly for me to enjoy, partly as a gift to my husband who is doing most of the errands, food shopping, and driving.
I think I’ll make it through the silence OK knowing it is in exchange for staying safe.
SB: Do you think life post-COVID-19 will be any different for those living with MCS? Do you think the culture will shift in any tangible way towards compassion/accommodation for people with disabilities?
VB: I wish I could offer more hope, but the short answer is no. Sorry to disappoint. MCS is an invisible disability. Most doctors don’t believe in it and attribute it to hysteria. There is almost no research about it. We are on our own to avoid products, people, and places, on our own to educate our friends and the public. That’s different from this current virus where nearly everyone is aware of its existence and believes there is a virus, and where the medical community is scrambling to get up to speed and help people. No one is going to quarantine a person who is wearing perfume or hair spray or fabric softener until they are chemically safe to be in contact with other people. The burden is on us to stay away, isolating the MCS patient and not the people who are causing the problem.
So, I don’t think the public or the medical profession is going to shift on MCS or disabled people as a result of the virus. I do think it will further isolate people already isolated. Because of that, I really appreciate people taking the time to hear our stories.
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I am you. Toxic mold exposure in my classroom. I missed five years of my life trying to regain enough of my health to teach, again. I’m back, but in a totally chemical and fragrance free building where only my husband and I teach. I cannot go into any other part of the campus without a setback. No church, no movies, no malls, no nice restaurants, nobody allowed in with fragrances, no hugs. My husband takes care of my needs, too. I’m exhausted at the end of each day, and take most of the weekend to recover enough to teach on Monday. This year we’re retiring. MCS totally changed my life. People are unaware and many can be very insensitive, letting me know that my problem is not their concern. It’s isolating, but I can now be around most fabric, so am able to sew and crochet. I can now tolerate some paper and ink, so can now read some, again. No markers or Purell for me. We don’t even own Windex! I’ll never be able to have a new car, can’t take a walk in the evening when people are using their dryers… and the list goes on! My doctor on the mainland was not a believer, saying, “You are one in a million.” My response was, “No, I’m one OF millions.”❤️ Kathy.