The Mask

The Mask
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Curious about the Mask?

Hello--

Leather, Velvet, Silk & Activated Charcoal: what the well-dressed New Yorker is wearing this season *
You may have seen me on a New York City subway or bus or walking around on the street wearing a funny looking mask. You may have wondered what was going on, and asked me or taken one of my pamphlets. Here's a little more of the story.

Due to a chemical injury, I have a condition called Multiple Chemical Sensitivity (MCS). When I get exposed to things like traffic exhaust, paints, glues, construction site fumes, formaldehyde, perfumes, fragrances, strong cleaning agents, smoke, etc., I get very ill. These substances, which used to be merely a very minor annoyance or to have no effect when I was in full health, now cause a debilitating reaction. I relapse for many days or even weeks, and I have trouble breathing and burning in my nose and throat, I get migraine-like headaches, severe nausea kicks in, I experience burning joint and muscle pain, I have great difficulty sleeping and eating, and perhaps worst of all, my cognitive capabilities are affected. I have trouble remembering and concentrating, and sometimes experience blanking out over vocabulary or tracking what step I'm on in a simple process. The effects are very similar to someone who has suffered a stroke or a car accident or other blunt trauma to the head. I've had a sense of everything in my life being utterly fragmented, and the effort to hold even two tiny pieces together is often too much. Brush my teeth AND return a phone call in one afternoon?--forget it! One very small thing at a time.

Before, I was a programmer and technical manager and business person, very active and organized and productive. Here's a little of what my life is like now. I have trouble walking across a room. I drop things and walk into walls. It's tough to put two thoughts together, to try to remember anything--thinking is somehow physically painful now, period. Often it's impossible to read (which I loved doing), and I get confused by the end of one sentence let alone a paragraph. Writing something takes 10 times as long if it's possible at all and requires a huge effort that takes weeks and fighting through lots of pain. In my condition, working with someone to write these pages was harder to manage than two semesters of college classes and finals. It took over a year to fill out a 12-page form to try to get disability help. I have dyslexic tendencies now. I can't take notes and listen at the same time, it's too much. I have to push myself hard just to listen and follow a conversation, or to speak and express myself. When someone is talking, I've lost what they said at the beginning by the end of their sentence. I stutter and stammer, and only manage to say about 1/10th of the information I need to get out to others with great effort and exhaustion. This is really dangerous when you are almost helpless and trying to communicate to others what is going on and that you seriously need assistance.

For the first few years, it's been difficult to maintain basic continuity from day to day. My sense of time is messed up, and anything that requires organized thinking like scheduling or planning things is very difficult. My sleep is disrupted. For months at a time I can't sleep more than a few hours at once, and those periods are completely random and unrelated to the cycle of day and night. It takes me forever to fall asleep and forever to wake up. I have trouble remembering to eat and often don't have the strength to get up and fix food when I am hungry. I lie there for hours trying to focus enough to get to the kitchen, then I get overwhelmed when I see more than a couple of items in the fridge, or confused if the pot I was going to use is dirty. I lost a lot of weight the first few years. (more descriptions)

I try to take care of myself by eating a careful, clean-foods diet, avoiding those harmful substances, using an air filter, removing irritants from my home, and lots of other things. I eat organic or free-range foods, and because of the resulting food allergies I must avoid dairy, sugar (even fruit), soy, wheat, yeast, nightshade vegetables, and more. That's pretty tricky to manage even for a healthy person, so you can imagine the challenge for me. I can't use regular soap, toothpaste, detergent, cleaners, or just about anything lying around the house that you might take for granted. I can't be around perfume or anything with fragrance or scent added. Formaldehyde is present in a lot more things than I ever realized--newspaper, markers, white-out, particle board, dry cleaning, and here's one on the list that took me aback: "certain ice creams".

For the past several years, my functionality has been severely reduced. I'm homebound. I use a walker. Thankfully now I have a health aide who does shopping and helps me when I am too weak to walk to the bathroom. This mask is helping me by keeping the chemicals away when I absolutely must be out in the city, which is rare. I'm really grateful to have found a tool that allows me more protection than I had before, so I am not utterly at the mercy of every bus or gust of wind.

Yes, it's a little awkward, but this strange-looking beast has become my friend. If you have questions, please send email to jenn@themask.org. Thanks for your curiosity, & have a nice day!

--Jenn

* Mask decorations by E. LaMourie. Writing help by EL, JB, and BD.

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