Readers of our blogs may or may not be familiar with the daily courage and challenges the face people who live with chemical sensitiviites. This letter was first written by a friend who does 'get' what it takes for one (or two and a dog) with MCS to visit or be with people.
This is a letter my friend kindly wrote for me. I edited it and then sent it to my parents yesterday. I am offering it to anyone as a prep tool should you go visiting with “chem people.” I plan to follow the letter up with an email and call. I suggest you find a friend who would agree to sign off on the letter. Here ya go:
Dear friends of Mary Rives, Keith Carlson, (and dog Tina),
Hi! My name is A.L., a longtime friend of Mary and Keith from Washington, D.C. I was at their wedding 20 years ago on July 2, 1989, and I have traveled and vacationed with them, visited each other long distances, met each others’ families and have been there for each other through many of life’s twists and turns.
As you know, our dear friends/family members are traveling the country in their RV (affectionately known as “Rigatina”) after simplifying their lives, including selling their home and letting go of most of their belongings. They will be experiencing the relief of permanently leaving the long, cold winters of New England that worsened Keith’s pain syndrome and increased Mary’s intermittent low back pain. They’re now living more simply in their radically downsized and carefully prepared non-toxic environment of their rig and have already visited more than a dozen intentional communities, perhaps to find one to live in near like-minded people in 2010. I know that visiting friends and family is an important part of their journey as they make a huge horseshoe trek, now completing the East Coast and soon to travel westward across the Gulf Coast. They will be in touch when they are nearer to your home.
I am writing to you because I’m concerned for Mary and Keith’s health. In addition to Keith’s Myofascial Pain Syndrome and Mary’s intermittent back pain, Mary and Keith have been chemically injured from a severe mold infestation in the attic of their previous home which has predisposed their bodies to being intolerant of many basic products designed for every day personal, home and office use. They have both been diagnosed, and are in treatment by environmental health specialist doctors, for what is known as Multiple Chemical Sensitivity (MCS) or Environmental Illness (EI).
I am particularly aware of these illnesses because I am disabled with severe Myofascial Pain Syndrome plus Chronic Fatigue Syndrome and Fibromyalgia. I witnessed the immediate bright red rashes Mary gets when exposed to “normal” cleaners, colognes and detergents, such as Windex being sprayed near our table at a cafe or being in line near someone who uses dryer strips, Tide, Bounce, Dash, etc. I say “normal” because we tend to take such products for granted as they are part of our every day lives. But just as many venues have banned smoking for the medical consequences to non-smokers, many public events are now including on their advertising: “No perfume, cologne, or other scents please.”
If you are a smoker, perhaps you can relate to someone having a nut allergy, since MCS is similar; with each exposure to the chemical, the body’s reaction is stronger, making the person with MCS symptomatic–sometimes for days–and more reactive to things they may have been fine with before. I refer you to these websites to learn more about MCS: the canaryreport.org and mcsamerica.org.
My concrete purpose for writing you is to ask that, for your visit with Mary and Keith, you survey your environment or any place you might want to take them during their visit. Depending on your home, being together in the great outdoors may work best for them, weather permitting. They will be sleeping in their rig as it is chemically safe for them.
Below is a partial list of products that are harmful to Mary and Keith, often causing them a range of symptoms such as hives, migraines, irritated throat and lungs, burning eyes, confusion and fatigue.
In a home environment:
• Laundry products and laundry exhaust–Tide, Dash, Gain and such brands, fabric softener and dryer strips
• Household cleaning products–ammonia-based cleaners such as Windex, 409, Lysol, Murphy’s Oil, Glade Plug-ins, Renuzit products, etc.
• Car exhaust
In a public venue: Cleaning products, pesticides, insecticides, etc
On a person: Perfumes, lotions, after shaves, colognes, hand sanitizer, hair spray and gel, laundry detergents and dryer strips.
I realize this may be new to you and that it may not be easy to change your home for visitors with special needs. But I gently suggest you compare the situation to a visit from a dearly loved family with a toddler. Most likely you would basically baby proof your home. Likewise, if an overnight visitor had trouble walking, you would likely arrange a sleeping space that would not require stairs and make it easy for a walker or wheelchair to pass through.
A few other friend-to-friend/family notes about their visit to you:
• Keith and Mary really want to see you. As much as their trip throughout the country is a slow relocation, it is also to be able to visit dearly loved family and friends.
• While friends and family often like to give one another gifts when they visit, Mary and Keith can’t accommodate extra objects in the tight quarters of their rig. If you feel like treating them, you might make them a favorite meal, let them use your (scent-free) car for errands and such, help wash the rig, treat them to a yoga class nearby or open areas of your home for stretching and yoga after their long drive.
• My suggestions: tiny sized gifts to cheer them like a gift card, map of the area, a book of stamps, or a little dog treat for Tina. Knowing them well, a referral to a good chiropractor and massage therapist nearby would be helpful. And if you are able to make a contribution toward an adjustment with chiropractor, expensive rig roof repair that is badly needed or toward a tank of fuel would also serve them well.
• More than anything, some quality time with you is what they’d love, especially since they rarely get to see you due to your geographical distance apart. But they absolutely don’t want you to go to any trouble.
I came up with the idea of writing this letter and had to talk Mary and Keith into letting me write and send it. They want to be NO inconvenience to you. But I was worried about their health; how driving may be hard on their backs, the exposures to chemicals they have to endure in the “great unknown” now that they have left their familiar environments in the Amherst area and the challenges of living in an RV full-time. I learned of some of their challenges and symptoms after they had been through just 4 states of the more than a dozen ones now. So I wrote this letter to facilitate preventative preparation, even with their reluctance, to help make their “excellent adventure” one with as much ease as possible. I learned that I personally needed–and would have really appreciated–a pre-visit briefing just like this one.
I sensed that you, her nationwide friends and family, would also be appreciative of a pre-visit briefing like this. Unfortunately, due to my severe Chronic Fatigue Syndrome, I am unable to be called to answer questions you may have, but Mary and Keith will receive a copy of this letter and you could contact them with your questions.
I hope you have a wonderful visit with this wonderful couple. With my warm greetings and advance thanks for your kind accommodation for Mary and Keith.