Life with MCS
Home is a tent right now. A medium sized tent, sitting in a patch of woods in the Pacific Northwest. Alders, maples, cedars, and other various trees shelter us from the world outside. A world that has now become too toxic for us to live directly in any longer.
Growing up I had seen my mom diagnosed with Multiple Chemical Sensitivities (MCS). I had seen that it meant she could not be around perfume, fresh paint, or insecticides – but almost everything else was still fine. This is what MCS meant to me, a mostly normal existence with something akin to allergies to a few really stinky things.
By some twist of fate, I now understand that for some of us with this condition its meaning becomes dramatically different. The word ‘sensitivity’ doesn’t even come close to describing the reaction my body can undergo when exposed to various chemicals that are commonplace throughout our modern society. The normal pathways the body uses to remove the chemicals we are assaulted with on a daily basis, these are clogged and sluggish for me resulting in an overload of things even in the tiniest amount.
I have no idea how many of us with extreme levels of illness from chemicals are out there. Most of us tend to stay at home in environments specially tailored to ease as many symptoms as possible. We rarely go shopping and usually only a few stores are tolerable to be in for any length of time. You won’t see us at the movies, bookstores, or any event that has a gathering of people. Were you to see us, other than a few odd things easily dismissed, you wouldn’t know how ill we were at that very moment because most of us have learned how to play the role of ‘normal’ very well.
If you saw me at your local co-op, you would see a woman in sun faded clothing, who has a bit of a lost and tired expression on her face, heavily flushed cheeks, and glassy eyes. That is it. That is all that would stand me out from anyone else at the store, and all but the intensely flushed cheeks and facial expression would be semi-normal for this alternative minded town.
Meanwhile inside me is a different story. My head is in a thick fog, hence the lost expression while wandering the aisles. The flushed cheeks are intensely hot, even painful, and seem to be tied to my body trying to induce a fever to burn off the invading toxins, as it would do with a virus. It is likely I have a headache, am dizzy and would have a hard time standing in one spot long which also leads to more wandering around the store. The entirety of my body becomes numb to normal sensations. Not numb like a limb that has ‘fallen asleep’ but numb as though so over stimulated it simply stops processing new data. I have often been amazed at the miracle that my feet keep walking, that I can actually speak, hold objects, or even remain upright because none of that seems possible when you can no longer clearly feel your body. Other various symptoms will occur as well, but are not as consistent as these.
This will all continue for several hours after I have returned to my safe environment away from further influence of civilization. The following days will see me with all of these symptoms to lessening degrees and a great deal of pain along every nerve in my body, but a completely new symptom also becomes fairly dominant. It is from the CFS and called post exertional malaise (PEM). My muscles are beyond fatigued from the simple act of briefly shopping for vegetables the day before. Weak as a kitten, ridiculously easy to become tired from even sitting up for more than a few minutes, it lasts from a day to several weeks depending on many factors – most of which are beyond my control.
Every trip out negatively impacts my life for days or even weeks, therefore I go out into the world only on very rare occasions, and typically only for medical reasons. I am not alone in this, it is a condition surprisingly many of us share to varying degrees. Yet rarely would you ever know the person standing next to you, swaying a little on their feet, might be having strong reactions to the very same air you are breathing safely.
Since moving to a tent in January 2002, I have visited two people’s homes that did not leave me feeling the way I have described here – all other homes have caused similar or even much more severe reactions. It is for this reason we decided to try and build a home safe from common building materials which are mind numbingly toxic. It is this type of home we dream of living in one day. A home where we can feel safe, warm, and most importantly – a home that does not make us continually ill on a daily basis.