Don't get around much anymore ... uncovering the stigma of disability

"Don't get around much anymore."  That's the name of an old song that old women like me remember.  Nat King Cole sings that one, but I've linked to the gravel-voice of Rod Stewart to fuel this post.

Listen here:
http://www.youtube.com/watch?v=YDaxCRDfXK0&feature=related

The lyrics start ...

Been invited on dates

I might have gone but what for

It's awfully different without you

Don't get around much anymore

Awfully different without you

Don't get around much anymore

I've been learning to live with the toxic drift of everyday/everynight Earth for seven years.  Diagnosis of MCS confirmed the things I knew were happening, credence to the things that made me more and more phobic and isolated. 

Writing and then blogging allowed me to tap into the well of resilience that comes from the Universe.  I discovered or remembered new and ancient sources of resilience to deal with my new life.

There are 4 Personal Super-powers  I call on one day at a time:

1.  Astrology
This was a source I'd tapped in years ago, but in such a different and passive way many years ago.  An ancient art and navigational tool came alive for me when I began to rebuild a life from a dream of a Gypsy's wagon.

I discussed Astrology in Real Life through the blog pages of a woman named Elsa P.  She has helped me navigate in unexpected ways.  I credit her here on VardoForTwo often because like the song says, "I don't get around much anymore."

Clipart credit:

2.  AL-ANON
Being affected by another's choices is not a new experience for me.  I was born into a family disease of alcohol, and found my way into the rooms (when I was still able to be in a room, and a roomful of people with fragrance and chemicals) of 12-Step Meetings.  When my disability escalated in 2007, my 12-Step life took a spiral.  My connection to the one day at a time practice had to be done one-on-one with my Higher Power and my sponsor of many years via the cellphone.

This practice sustains me still.

3.  Blogs and blogging
We had a very old Sony laptop that made blog world happen for me.  Ruby, the Laptop hung in there to chronicle the building of a safe haven through blogging.  I learned to reach out through other bloggers who also lived with Multiple Chemical Sensitivities.  I slowly built a support network, and we built VardoForTwo with a few internet friends who watched us reassemble a life.

I birthed blog after blog.  Therapy at the keyboard.  And then, Ruby passed on worn from the road and the wear.  It isn't easy to replace a piece of equipment when you live with sensitivities to material and new product.  It took a year to find this laptop ... a hand-me-down from our new friends Eileen and Mary.

Thank you for the connection.
4..  Masks
Covering up is both a process and a survival technique.  Thousands of us seek out the protection of masks that we can wear to make exposure to the environment possible.  Some of us wear 'em on the outside, some wear 'em on the inside.  I think that's part of the lyrics to (another) song I love ... Bette Midler?

The mask I wear, and often have dangling off one ear is the I Can Breathe Mask.  The one I have now is a 'designer lace' get-up prettier than many I've had.  It is outfitted with a carbon-filter that can be replaced, and the lace is polyester that I can tolerate.  There's always a mask tucked into my pocket or purse.

With the New Year of the Rabbit starting today, I'm hopeful and energized by the alignment of planets in the sign of Saturn.  I'm a Saturn-ruled old woman and count on the ancient charts to offer me signals.  It's not easy, I gotta tell you, and I keep digging through the ashes looking for the next ...

How do you cope with disability?  Can you relate to wearing your mask on the inside as well as on the outside?

The Naked Truth about MCS

I've always wanted to be a poster girl! Earlier this year Susie Collins author and editor of The Canary Report a blog and social network for and about MULTIPLE CHEMICAL SENSITIVITIES was inspired by Eva Cabelle of Spain. Eva lives with MCS and took her truth to the whirl of disbelievers and challenged all with her naked truth. That inspiration sparked the idea for creating a calendar focused on the real lives of women living with this incredibly debilitating and isolating environmental illness.

The Calendar is out! 15 women are part of this 2010 calendar The Naked Truth About MCS. The calendar and the article about its release are available online from The Canary Report. All proceeds go to the Environmental Working Group, a non-profit organization involved and educating the collective consciousness with the truth about the every day chemicals, the industries that concoct, market and hold us hostage/addicted to the synthetic world of "products", and the governmental process and politics that fuel the cycle of greed and toxicity.

The photo above is me Ms November... Wahine Toa (warrior woman) taken at the back of VardoForTwo while Pete and I lived on the beautiful oxygen-rich Ledge in the woods. I chose to face the camera as I wish I could face the world: STANDING proudly encamped in a pesticide free zone with the phases of the moon and the radiance of a full spectrum sun. I hold my o'o, the walking stick to remind me of the need to be sustained by nature ... holding on for all I'm worth and using that stick as a weapon if the need arises. Around my neck is a lei of tiny shells a gift from my son on my 60th birthday, linking me to the salt water that is me. The golden wagon safe haven built with due diligence and tears is our singularly safe space. Chemicals surround that wagon on wheels 24/7, awareness and transformed choices based on the knowledge that saner, healthier choices are possible remain minimal.

Here's a project that shouts the naked truth. Thanks to Susie Collins and the women who contributed their versions of MCS truth, check it out and tell your friends, families, your congress men, your congress women, your mayor, your neighbors, the managers at your local co-op, your local drug store! MCS is real, alive and closer to you than you think.

P.S. Ruby my magical laptop made posting this photo possible. Thanks, Ruby!!

Dryer Sheets and Fabric Softeners Are Lethal

It's another rainy day in Seattle, but for a few minutes Pete and I stepped outside the Kitchenette hoping to get a little work done on the window trim. Sometimes, I forget that I have MCS and am thrown back --literally, by the smell of DRYER SHEETS. The exhaust outlet from our neighbors basement (where their laundry must be) is just on the other side of the hedge. VardoForTwo is within a couple feet of that hedge.


Dryer sheets are one of the most lethal of triggers for people with MCS and are not good for anyone. I quickly retreated inside to get my mask. I switched to a new one and fitted the washable outside piece with two charcoal filters for insurance, and put my eye goggles on before I went back out. I'd just begun mixing up a new batch of milk paint to test the color of the trim and decided to finish the mix before leaving Pete outside. It doesn't take more than a very few minutes to be over-saturated by the toxins.


As I write this piece I have a slight head-ache in my forehead and feel the hazy remnant of the 'brain fog' that is a symptom of an exposure like this. I use a nasal inhaler filled with Glutathione for episodes like this.(stopping to give myself a second dose of spray). The prescribed supplement helps to restore my brain cells after an exposure to the chemicals that make up a dryer sheet. I also use glutathione in a nebulizer to build my system's ability to respond to immune system and brain function break-down. To learn more about glutathione's potential healing affects for you please find an Environmental Physician who specializes in the care of folks with MCS. Between writing I took a nap with my portable c.d. player and my RELAXATION QIGONG tape. I played the "Four Route Relaxation" exercise I usually reserve for going to sleep at night. Today I decided to try clearing the spent qi that was affected by the smell of dryer sheets using that twenty-five minute exercise. It was very calming.



For the record, here's a list of chemicals found in a dryer sheet:

Benzyl acetate: Linked to pancreatic cancer

Benzyl Alcohol: Upper respiratory tract irritant

Ethanol: On the Environmental Protection Agency's (EPA) Hazardous Waste list and can cause central nervous system disorders

Limonene: Known carcinogen

A-Terpineol: Can cause respiratory problems, including fatal edema, and central nervous system damage

Ethyl Acetate: A narcotic on the EPA's Hazardous Waste list

Camphor: Causes central nervous system disorders

Chloroform: Neurotoxic, anesthetic and carcinogenic (this is the stuff used to embalm!)

Linalool: A narcotic that causes central nervous system disorders

Pentane: A chemical known to be harmful if inhaled

"The chemicals in fabric softeners are pungent and strong smelling -- so strong that they require the use of these heavy fragrances (think 50 times as much fragrance) just to cover up the smells. Furthermore, synthetic fabrics, which are the reason fabric softeners were created in the first place, do not smell good either when heated in a dryer or heated by our bodies ... hence the need for even more hefty fragrances. In other words, remove all the added fragrance that endears people to fabric softeners and -- like the cliché wolf in sheep's clothing -- the real smells of the chemical-laced fabric softener and the synthetic fabrics they were designed around may prompt people to shoot their laundry machines and be done with it."

- A excerpt from a post from GLOBAL HEALTH CENTER FORUM: http://www.ghchealth.com/forum/post-325.html

There are alternatives to using fabric softeners and dryer sheets

1. DON'T USE THEM.

2. Add 1/2 c. or more of baking soda to soften clothes and clean without laundry detergent.

3. Use an unscented and unmasked detergent. We use BIO-KLEEN Free and Clear laundry detergent.

4. Put a small amount of 'safe for you' unscented hair conditioner on a piece of cotton fabric that is already clear and safe, toss it into your dryer with your laundered clothing.

Do you have any other free and clear methods that work for you? Share them here. Thanks so much. Every dryer sheet and fabric softener left on the shelves is one less toxin in the air ... tell your retailer you'd like to see them stop stocking them.

Building a safe place means knowing what you're trying to protect yourself against. It's a daily reality for the MCS Tribe. Do your part to make toxins tougher to get at ... educate yourself and take action.

A hui hou, Mokihana