Am I Losing My Mind? The Surreal Life of MCS
Personally for us, MCS often seems surreal. Like we are in the Future and others are in the Past and we are trying to warn them and stay safe from their tragic mistakes. Watching TV and each ad is some healthy happy person telling you to buy something that will harm you. Driving and seeing the uniformed choices people are making with their lawn and home care are all linked to many modern illnesses. Passing by a factory or farm and needing your mask immediately. Other humans often wondering what you’re even talking about, “There is no smell.” Racing out of a doctor’s waiting room when another patient strolls by poisoning you with their secondhand fragrance as people look at you in shock. Staring at your air vents wondering if there is mold in there. Thinking of everyone you know who is sick and wondering if it is linked to when they worked at the mall at a cosmetics counter, or painting houses, or landscaping, or working in an ancient library, or as a farm hand, or in a factory, or as a soldier, or as a mechanic, or as a hair dresser, or as a cleaning person, or as a teacher, or anything. Suddenly your whole life feels focused on staying safe. The paranoia and hopelessness come and goes.
I hear from Canaries who have been Canaries longer than I have that those feelings fade once you start to understand your body better. (Three years later I can say they were right!) At first everything is suspect and scary. I feel like the usual Marvel comic book tragic superheroine. I wear gloves in terror like Rogue. My Spidey Sense tingles in my lips when toxic substances are near me. This was all caused by a terrible lab experiment gone wrong – done to me for corporate greed – and under a huge cover up, making my very existence subversive. It looks exciting in the comic books. In real life it is tedious.
Grief, Rage, Terror: The Emotional Trinity of MCS
It is good to grieve. Our culture demands fake happy. Gone are the days of wearing black for a year and being brought casseroles. Grief is normal and you cannot rush it. It comes in waves of many emotions, all part of the sea of grief. Grief will not kill you. You are allowed to have your emotions. No one can tell you what you “should” feel. Grieving the losses is a sign of respect and love for what is gone. I see anger as another form of love. We are angry when someone or something we care about is harmed because we love them. You don’t get angry if you don’t care. Anger is information that something unjust is happening. After it gives me that information, I have to decide what to do with it. Sometimes I have to sit with it for a while before making a decision about how to handle the situation. Making the world safer for me and others is a good focus for my loving anger. Anger from exposure is common – intoxication from poison makes you a mean drunk. But anger also comes from the senselessness of MCS. There is no reason why you or I should have this illness. We have been living in an unregulated, unsafe world so others can make money and no one is protecting the public. This illness did not exist 100 years ago. It was created. Worldwide people are sick from these abuses of power. Plus you may be angry at the people who specifically made you ill if it came from one major event. You may hate your neighbor for using pesticides on their lawn and your grocery store for being inaccessible. The only way I have found to handle my anger is activism.
Next to anger, terror is another big feeling that can motivate you to take action, usually about homelessness and health care. MCS has a high homelessness rate since there is so little housing that doesn’t make us ill. (Reports are coming in that persons who lived in FEMA housing have high rates now of MCS.) Fear is a healthy reaction to danger; anxiety is a crippling obsession over “what if?” Learning which is which can save your life. Keep in mind the quote: No feeling is final.
In a world that treats us like criminals for saying we have MCS while terribly ill can be overwhelming. The lost money, the lost support, the lost freedom – I don’t think any Canary has not considered suicide as a way to end the suffering and feelings of hopelessness. But consider this: 1 in 2 “everyday” people will/are/have seriously considered suicide for two weeks at least once in their lives. You probably crossed their paths and had no idea. In spite of what marketing wants you to believe, life is hard. This is the fight of your life and it is unbelievably hard. If it works for you, please try to do what a psychologist told me. Do not panic because you do not know what will happen tomorrow. I add it is hard to not panic because this illness makes you inTOXICated. But making any decision when intoxicated is not smart. I often feel suicidal when I am living in a poisonous room. One symptom is range of emotional reactions: panic, rage, terror, crying which also seem to come when the exposure is causing a loss of cognitive clarity. Just being moved into a different space for 10 minutes and seeing that I CAN be well helps me when living in a toxic house. I don’t want to die; I want to live someplace else. And tomorrow more leads and more dead ends and other leads and all the rest will continue, but my mood may be different. Sometimes it feels like “1 step forward 20 back.” Skills for handling crisis and remembering it is the poison not your real feelings can help. If you can, just sleep it off.
Do not make any major decisions when inTOXICated. Friends don’t let friend drive, online shop, or call their exes when inTOXICated. Be your own best friend. Despair is common. Why live in a world this sick? When it is so hard to stay well even when you go nowhere, see no one, own nothing, do nothing, it can feel like life is over. Each day in the beginning especially is a line of huge hurdles. You run out of toilet paper, what can you do? I find that doing anything helps me break the paralysis of fear. There is no option. I truly believe that until recently no one thought life would be easy. Today it feels like people demand that they be happy at all times. I cannot imagine any ancestor of mine thinking that they deserved a great life just for being born. That they deserve to live pain free. I saw a TV show in London once about how strange it is that the US Constitution mentions happiness. No one in any other country expects happiness as a right.
Real life hurts and is hard.
Knowing that every human ever born has known this and dealt with it helped me decide to deal with it, too, and not run into a denial temper tantrum. There is a form of therapy called Acceptance and Commitment Therapy (ACT) which helped me to see that life will never be perfect or trouble-free but I can still live a meaningful life with all the imperfections and trouble. (This is not an endorsement for ACT; just giving credit where it is due.) MCS will not go away but I can choose to make my life matter. So when I feel the absolute despair I do one of two things: practical action just to keep moving along, feel like I am solving the problem, and not dwell on the immensity of the issue OR I work with self compassion. Compassion Focused Therapy (CFT) has helped me the most to handle what is happening. This is hard and I deserve some love and kindness. What we Canaries face each day is harder than most Westernized people will ever know. I feel like I am living in a nation where we have to walk 10 miles to uncontaminated drinking water and toxic waste from the USA is piling up to pay off our national debt. I relate more to people in Nigeria than the US some days. A friend calls this “living in the third world in the first world.” (I know and she knows that those terms have no meaning since the end of the Cold War.) It is becoming a lot more common. If I am compassionate with myself, it is easier. If I just accepted life is hard (ACT) but didn’t learn self compassion (CFT) I’d probably be dead. I learned to not focus on things I cannot do anything about at the moment. Instead I use that time to do what I can to take care of me.
You Are Needed
Mary Ellen Copeland has written many great books about handling the real world that are used in hospitals, support groups and psychiatric programs – while having fibromyalgia and bipolar disorder. Her WRAP – wellness recovery plan – is now a standard, first-step mental health tool (which is easily adapted to a MCS tool). As I mentioned before, Marsha Linehan, the woman who created the most successful form of therapy loved by insurance companies because it works so fast, DBT, finally revealed that she had borderline personality disorder – something once believed to be “hopeless.” Imagine: DBT which is the first therapy that is proven to help if not cure BPD was invented by someone with BPD, a diagnosis that most mental health professionals made fun of to each other. And a lot of Canaries have written books that are taken seriously. Keep this in mind. Your life can still have meaning. You are still needed and valuable. It might not be a book but you have something no one else can offer. If you can only do one hour of it a month, that shows strength of character and how amazing you are. Most people offer very little to the world while in rather good health. Focus on what you do that makes you heroic. Every day you live as Canary, you are heroine or hero. You are facing things most if not all people say they could never do. Just that changes the world. Don’t let the bad guys win. We all need you. You deserve to live. No other animal commits suicide. They fight to live. (Lemmings are pushed by other lemmings in their frenzy.) They know they deserve to live and demand it until the end. Look at the house-cat that will do anything possible to annoy you so you get up at 3 am and give her Fancy Feast. Be that house-cat.
Life is hard. Life has pain. Life is not fair. Life is not like the lies told to you in hopes that you’ll try to buy external happiness and hate yourself for failing. So cut yourself some slack, not your wrists. We are all on your side, you just cannot see us. But we are with you right now, united in a common dream: Life. Never forget us.