I am ready to live in a leper colony. Or rather the updated, first-world equivalent of a leper colony. In fact, I fantasize about the possibility on a daily basis (aided by MCSVillage on Yahoo! Groups). I want to flee to the countryside, forsake the company of my cherished friends, and shelter among people who share my illness (Multiple Chemical Sensitivity).
I know we may have little else in common, besides raggedy nerves, but I need more social contact and I need it with people who don't travel in a cloud of perfume. People who don't reek of the infernal dryer sheets. People who don't smoke. Preferably people who don't ever need a match for anything. I have fought the good fight for inclusion of the disabled in society, but I have battle fatigue and I want to retreat.
My fantasy colony has taken various forms. In my more desperate moments I bargain with fate for just a campground. It would have a communal kitchen with electric appliances. Policy would prohibit fragrance and smoke. When I'm feeling more expansive my imagined community runs a green business and, of course, its members live in sturdy dwellings. We have solar power and zero-emissions vehicles. We are not refugees from modern life; we are its pioneers.
What do you dream of, my potential neighbor? I know, you want to be well again and to move again in the whole world of possibilities. And I wish it for you. But in the meantime, do you pine for a big house on a big acreage, all for your very own? For your own washer and dryer? Your own mega air filtration system? Your own sauna? People do set themselves up--home offices, home gyms, home theaters. It may be sour grapes on my part, but that life looks as lonely to me as my own. And wasteful.
I say let's be part of rerouting the American dream before it crash lands. Let's make healthy people want to leave their unhealthy lives and come abide with us. I'm sure that being socially ostracized has something to teach us about the possibilities of community and mutual aid.
Hey, you can experience a tiny sense of connection right now. Leave me a bit of cheer, anonymously if you like. (Start by clicking on "comments" below).
Wednesday, April 11, 2007
Modern Leper
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12 comments:
Greetings Masked Avenger, from somewhere in space. :)
I would gladly join such a community, even if it were only a campground spot. =)
Just found your blog. I've been looking for fellow MCS sufferers on the web for about a month and this is the closest thing to a supportive community I've come across! Now I can go look at MCSVillage on Yahoo Groups (why didn't that come up when I did a search for MCS on the groups site?) and see whether that meets my needs or not. In the meantime, know that you are not alone in your dreaming. I'd like a piece of land that didn't have to be "maintained" right on edge of the ocean. Small, safe house, all the appropriate amenities... And I'd like to see all the Hummers and SUV's removed from society.
All people should aspire to your wish for a place that is free of chemical exposure. I think things are headed that way, but it may take a while. Thanks for your inspiring blog!
Wow! Are you all like me? Glad to meet you all and hope we can share a bit. Tired of doing this all alone, right?
I am in the process of writing a book about the experiences of people with MCS including my own. I am looking for people who would agreed to be interviewed regarding when how and what happened. I need people who can connect their MCS with a chemical paint, pesticide found in their home. I would give a percentage of the profit I make to those people whose stories I print. They would remain anonymous. Would you be interested? Anyone who is please let me know on this blog and I will contact you. A fellow MCS sufferer. Ellen
I have had MCS for 10 years. I had a very good life because I had my husband, a safe house, a 6 acre farm and beautiful border collies to raise, train and trial out on big ranches and farms in the Northwest.
Six weeks ago I made the horrible mistake of letting a young woman into my home who was wearing perfume. After 5 days of health problems, I compounded the situation by using a type of photocatalytic spray on some of my walls. We had used a type of product like this before to remediate mold, and when it bothered me a bit, I washed it away. Not so this time. The activated oxygen created in this process disinfects air at rates higher than ozone. I am currently living outside of my home for the past 2 weeks, recovering from CNS problems. My husband is severely stressed as remediation attempts at this point are not working and I am afraid of everything.
The next steps would include sealing off part of the house, cleaning walls with caustic chemicals, or painting over walls, or just taking the damn walls down. I don't know if my marriage will survive and I am worried about a warm, dry place to spend the winter without leaving my loved ones. I have dealt with a lot of loss with this disease; a job, access to public places, etc. but was really happy and grateful with my life. It is hard to accept that in feeling so good these past three years, I made two such stupid blunders. I am paralyzed with fear and don't know if I can hang in there. I feel right now like I'm in a nightmare and am losing all control. I am sleeping in car outside my home, and looking in at the lit windows at night. Please, let's all keep each other in a positive ring of good thoughts. If anyone has any ideas, let me know. The photocatalytic spray "veneer", left undisturbed, is supposed to last 1 to 2 years. I've got to do something. I am trying to fight for my home and life. Thanks.
I hear you on this one! I am in South Africa right now in the fresh air, cause I cannot handle the winters in Chicago being closed up with all the toxins. Great work on the blog!
Hi, This is my first attempt a posting to a blog. I am a 68 year old male with MCS for the last four months. I've been reading everything I can lay my hands on about MCS, trying to figure out what is going wrong with me.
One tip that I would like to share with fellow MCS sufferers, especially Masked Avenger: If your problem with your computer is with the awful smell of the plastic (and not electrical sensitivity) try applying a thin coating of Silicone Grease (Home Depot, $3 for 1/2 oz.) on all the plastic parts, even the keys on the keyboard, to eliminate all emissions. Silicone Grease is the main ingredient in car and furniture polishes and unlike noxious petrochemicals, is a chemical based on silicon, not carbon. I find that it has a slight, non-toxic smell. Don't apply the silicone to the display screen or any exposed electronic connections. Hope this helps someone use their computer more easily.
Hi, This is my first attempt a posting to a blog. I am a 68 year old male with MCS for the last four months. I've been reading everything I can lay my hands on about MCS, trying to figure out what is going wrong with me.
I've read that 80% of MCS afflicted are women. This blog seems to bear that out.
One tip that I would like to share with fellow sufferers, especially Masked Avenge: if your problem with your computer is with the awful smell of plastic (and not electricial sensitivity) try applying a thin coating of Silicone Grease (Home Depot, $3 for 1/2 oz.) on all the plastic parts to eliminate all emissions from all the additives. Silicone Grease is the main ingredient in car and furniture polishes and unlike all those very nasty petrochemicals, is a chemical based on silicon and not carbon. I find that it has a slight, non-toxic smell.
I am encouraging people to look up contact information for SCJohnson and Proctor and Gamble and other companies that make products that make you sick. A big target can be laundry products, Gain by Proctor and Gamble actually markets to "Strong Scent Seekers" my theory is that the laundry products are being forced out of laundry exhausts, heated and moving fast, which obviously impacts the air in densely populated areas such as apartment buildings a lot, so lets start with them. I call all the time or write on their contact. They will try to put you off but if enough people write to them they may change the formulas, figure out what is making people sick but instead of commiserating with each other, WRITE OR CALL MANUFACTURERS. I purposefully mentioned two large, world wide "umbrella" companies so you can take a look at things they make under various brand names and let them know what you are experiencing.
I also think a "Change.org" petition can help, I am working on that but I recommend dozens of them
I just found this site...thank you so much for your blog! I'm currently looking for a new place to rent because I can't handle being cooped up with the windows closed all the time because of the smokers who live around me. I love gardening but I can't do it anymore because of the smoke and dryer vents. I'm looking desperately for a new place and you just listed all the things that I am aching for. Looking at a potential place tomorrow...wish me luck!
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