Brain’s Owner Manual

The brain’s purpose is to problem solve. When you find out all the things you have to do for MCS health, your brain may fritz and you may become paralyzed with fear. It may be hard to prioritize; after all, since this is an “all or none” illness as far as exposure safety goes, where do you start? My hint: With what is easiest. Whatever you can do with your current resources, which varies immensely between people, start there.

The brain likes to label things. This is helpful when remembering which is Poison Sumac and which is Staghorn Sumac. The brain does not like ambiguity, however. MCS comes with a truckload of ambiguity. Ambiguity often causes anxiety. Most humans feel uncomfortable with ambiguity – including doctors, who are trained to label problems and then fix them.

The label doesn’t change what the thing being labeled is. If you have ever been misdiagnosed (I see a lot of heads nodding as MCS often comes with a Russian Roulette of misdiagnoses) you understand what it is like to have people react to you as a label and not as the actual thing being labeled. Humans have trouble getting their brains to stop believing that sound/squiggles (language which makes labels) is real, like the word fibromyalgia on an old chart, and open their minds to the fact that it is the actual thing being labeled that is real, even if this that thing is another humans speaking to you, like me. This is why bigotry is so easy and why labeling others is so unhelpful. We stop seeing people when we start seeing “gooks” or “drunks” or “white trash.”

Studies show that a person living with MCS’s emotional health is directly related to how safe their housing is. Why this would baffle others is beyond me. How would your mental health be if you were sleeping in a car that still, after endless various cleanings makes you dizzy, with severe back pain, in terror that the police were going to expect you to unroll the window or someone was going to break in and rape you? Or if you knew that your subsidized housing, rented slum lord housing, or the home you owe so much mortgage on still in a market when nothing sells, when you wake up sick and disoriented and look around the room you covered in tin foil, any touchstone to your past in a dumpster, knowing that the actual building is killing you – but you cannot go outside into a world of fragrance, car exhaust, wood smoke, pesticides, etc. for a breath of fresh air – because your body knows there is no such thing as fresh air left. And you’ve fallen so far through the cracks of the medical and social health systems, you are in a deep underworld hole that no one can relate to when you attempt to explain. How would you feel?

Whatever your feelings are, they are normal, be compassionate with yourself even when others will not, don’t beat yourself up about not doing this “perfectly” since there is no way to do MCS perfectly, and know this: All Canaries have felt how you do and many have gone to have lives of meaning. I read it takes about 3 years for someone to adjust to having MCS. I am in month three. (Note: I am now at the three year anniversary of knowing I have MCS. I call my current life “the post-Apocalypse.” I’m relearning how to live, not just survive.) It is awful, but I know it is far better than it was 20 years ago for people with MCS and due to all our efforts it will be far easier in another 20 years. Take it day by day and know you are doing what most people will tell you is impossible. That makes you a hero or heroine. So put on your activated carbon filter, respirator, or Oxygen tank mask and breathe.

I want to stress is that when in crisis people tend to stop doing everything that is good for them and start doing everything that is bad for them. If playing guitar, calling your friend Steve, and doing Pilates makes you feel good, those will be the last things you will probably do when you feel bad. I have no idea why this is. When you most need to meditate, you smoke cigarettes. When you most need to sleep, you push yourself to do an inane project. When you most need to get out and garden, you stay inside staring at the TV. Humans tend to stay focused on the feeling bad as a protection device. Like practicing self care would distract us from our problems and then our problems would multiple and attack. Or we feel guilty and that don’t deserve self care. Or any other reason for why humans do strange things.

Make a list of what nourishes you – not what you think should nourish you but what does nourish you – and post it and carry it. Remind others to remind you of it. If you need to, make a daily check off list about what self care must be done each day, as some days can be so crazy with exposures and crisis, you might not remember if you ate or brushed your teeth. Know what books, music, foods, art and movies you enjoy and have them ready. A great deal of Canary safety involves preparing, and this includes your emotional safety. This is also a responsibility you have to handle quite a bit on your own now. All of the nest building skills are really learning new ways to take care of yourself. Keeping yourself psychologically safe and sound is just as important as not being exposed to chemicals. Your tomb stone I hope will not read “She avoided chemicals.” Find ways to nurture yourself emotionally and actually do them. Guilt about feeling pleasure is a cultural problem and one I am not going to tackle here. But if you don’t deserve some joy in life, honestly, who does?

I know that people especially social workers can become snarky and suspicious if you are not on death’s door wanting to shoot your yourself in the head, but don’t base your life on what they may think. It’s your life and you are entitled to your feelings of both happiness and sorrow.

Being on the beginning of the bell curve of an illness is hard. You are often more educated than your doctors, the media portrays you as a bad person, and almost no one you know understands why you are sick. If more people learned that this can happen to them just by being exposed to daily things like you were, society would have to make major changes. It is not something any corporation is going fund research for unless it “proves” MCS people are crazy. Canaries often do have depression and anxiety disorders, but living with this illness and the associated traumas often does cause normal sadness, anger and fear. Plus we have to deal with the neurological haywire of (to me) the worst symptoms of exposure: mood swings, rage, crying, and panic. If you had been sniffing glue all day, you’d have those emotional symptoms. Living with MCS often feels to me like being an unwilling gas huffer, forced randomly into terrifying cognitive and emotional lapses of good judgment when exposed.

All the disabled people I know, no matter what their impairment is, also struggle with depression, rage and anxiety from isolation, poverty and discrimination. According to any report I have read, all chronic illness patients report a much higher than average level of depression, rage and anxiety. Not just MCS. Don’t let them single you out for having healthy normal feelings.

What is the emotionally healthy way to feel when you have MCS? How you feel.
Those who feel less depression, rage and anxiety have great social support (very hard for the isolated Canary), learn good coping skills like relaxation, mindfulness, and radical acceptance, and feel like their lives have meaning. We cannot control the lack of social support we Canaries usually do not have from anyone but ourselves. This is why developing the last two are so important for keeping yourself sane and safe emotionally.