An MCS Awareness Visualization

May 12th is International MCS Awareness Day, and May is MCS Awareness Month.  Many people who have MCS also have  MCAS – Mast Cell Activation Syndrome, where chemical and other exposures cause anaphylaxis.

Guest Post from Raven

My request for you to visualize:

I’d like to ask each of my friends to sit in a quiet space for just 15 minutes and close your eyes. Breathe and get calm and relaxed.

Now I want you to think of yourself only. Visualize yourself in your body. Once you see or feel you, I want you to see yourself 

Alone outside with no place to live. You are standing in the wilderness, in nature, with no where to go.

Your family is gone living far away in their lives having dinners together, going shopping, in a warm house, in nice clothing, talking on the phone, laughing, having friends over, going on vacations, going to work, having a normal life.

The same with your friends….

Sit with this. Visualize your loved ones so far away enjoying life without you. Feel this inside.

See your children, maybe your grandchildren, nieces and nephews, hugging your relatives and family friends as if you are looking through a window. You can see in but they cannot see you.

You ache to hug them but they do not notice you. You can’t get to them or have them see or hear you.

Be there. Sit with this. Feel it.

Now, look down at your legs and feet. See no shoes or see shoes with holes in them. Go to a mirror in your mind and look at yourself. Your clothing has holes and are worn and stained. Your hair isn’t colored and there’s no make up on if you are a woman. Your face and eyes look worn, tired and sad. You look unkempt and shadowed by existence. You look like a homeless person lost and tattered.

Now you look around and you see a metal shed the size of a tiny room in the middle of the wilderness. You walk inside and there’s just a pad on the floor with a few blankets and a thin pillow on it. There’s a plastic chair in the corner. There are no photos, no personal items, no books. Nothing of home or your previous life. You sit and you look around. Grey, cold metal. Nothing else but a stack of clothing and a few rags hanging from a thin bracket.

Now walk to another small shed where you have a refrigerator and look inside. There’s not much on the shelves. You have little money for food. Just what people send you if they remember. You have 7 types of food you can eat without getting ill. Organic everything. Chicken, cabbage, broccoli, potato, cucumber, lemon and green beans.

You gather some food and take them to your outdoor stove and table 365 days a year, no matter weather, and you prepare what you can. You stand outside cooking. It’s snowing. Maybe raining. Winds 25 mph. Dust swirling over your food. It’s 9 degrees or 98 degrees with flies attacking you.

You sit outside to eat or in your shed in your plastic chair. You’ve got water on the stove heating. When you are done eating, you wash dishes outside and bring in to dry in the corner.

You shower now. Outside. 365 days a year when you can. In the summer, when you have time. In the winter, between 2-4 pm and then rush to the bed where you have 10 hot glass water bottles and 5 hot rice bags you heated in the microwave taking 1 1/2 hours to do so the bed is warm. You re-heat again at 9 pm to make it through the night.

You get up in the morning with a chore list a mile long. Garden – 3 plus hours. Feed yourself outside – 2 hours. Feed animals (as in my case) – 1 1/2 hours. Build a house by mud – (7 hours). Dinner – 2 hours. Shower if you can – 1 hour. 16 hours to survive and build.

Then Sleep. Blissful sleep. Your only refuge.

Holidays go by like any other day. Work. Build. Survive.
Birthdays go unnoticed. Days turn into weeks and weeks into months. You see no one but an occasional person that drops in. They are filled with noxious, toxic perfumes and soaps and dyes and creams and gasoline and moth balls and cleaners. You can only visit outside standing upwind no matter the temperatures or weather. No matter how hard you try, their toxic choices make you violently ill. You’re happy to see people you like but you are glad when they go because of how ill and exhausted you are.

They leave and you have to heat water to shower. You have to get their fragrance off of you.

It takes an hour for the water to get hot. You bathe. You’re too ill to make food. You have to sleep so you go to bed. You spend 4 – 14 days reacting and ill from a visit. Depression grabs you. You’re bodies on fire. Pain. Nausea. Memory loss. Cognitive impairment. But you have to work anyhow. Every day matters for survival.

Today is laundry day. You fill a black tub with water. A second one now. You wash your threadbare clothing in ice cold water, baking soda, vinegar, maybe a very mild soap like Dr Bronners or 7th Generation Free. You bend over on your knees scrubbing, then rinsing and hanging on a line 52 weeks out of the year. Clothing. Comforters. Blankets. Pillows.

You go without a coat in the winter and wear long sleeves in the summer. You need clothing. You have no money. You can’t buy toxic second hand clothing due to past washes and soaps others used. You have to buy new but you can’t go to the stores. They’re too toxic. Finally, a friend buys you 3 outfits. They’re new clothing that must be washed 30 times in a clean washer unused or an MCS friend who has a clean washer can wash them if they will. Most won’t. It’s allot of work, time, and new items can make them ill.

Or you boil clothing and hope they come clean of dyes, formaldehyde, pesticides, fragrances, etc. You can’t breathe them in or touch them until 23 washes or someone else boils them for you. In 30 washes or in a few months, you may have an outfit. In a year, shoes will be ok to wear after sitting and airing out. The rubbers and adhesives make you violently ill.

You can’t read. Books, paper, ink are too toxic. You can no longer do your art. Again paper and most supplies are too toxic. You can’t drive because you can’t pump gas. Your neighbors think you are weird because you get ill near them and you look frail and shabby. You once were healthy and pretty and people liked you, allot. Now, you don’t even resemble any part of who you were good, bad or indifferent.

Now, your eyes are dimming but you can’t go in to see an optometrist to get glasses. You feel so ill but you can’t go into a doctors office because they are so toxic and you cannot afford treatments and care out of pocket for alternative support. A hospital will kill you. It’s so toxic. Cleaners. Antibacterial soaps. Alcohol. Wifi. Radiation. You need your teeth cleaned but a dentist is an oral death trap.

Winter comes to your metal shed that has no insulation. The wind is blocked mostly but the cold is constant. You can’t heat with wood. Propane. Electricity. You can’t buy and wash out more covers. No one can or will help. Food is bare. Your family is far away loving, laughing, visiting each other. Holidays pass and no cards come because they feel they’re too toxic to send and they are. You are all but barely forgotten. No gift. No card. No calls. No or little food.

Alive but a ghost of a life. A walking corpse alone in the world. No one will give up their toxic products for you. Soaps and shampoos, air fresheners and laundry soaps are more valued then you. Toxic products are more valued than your life.

Sit with that. Someone’s shampoo is more valuable than you.

No one will come to visit you. No vacations to see you or with you.

No one will send you money each month to help you eat. No one will do a drive to put money away to help you eat. People are just too busy.

No one will come and help you build your house and see it done. It’s ok you live in the cold, in snow, freezing to death. It’s not them. They can forget you and live only in thought of their life.

You cease to matter. Your life is a silent swell of forgotten-ness. The worlds too busy. You’ve been pushed to the dark corner of existence and people move on, fast.

Your body aches for love. For hugs. For kind words. For joyful sharing. But there is only silence. Loneliness overcomes you. Sorrow wets your cheeks more often than not. Your heart breaks into a million pieces feeling the weight of scourge within your chest. You beg every night to pass away peacefully and awaken wondering why life keeps calling you back. You pray for mercy. Pray for help. Pray for consistent support. Pray for release. And then you get up exhausted, worn out down to the marrow in your bones. Your body hurting with every step. Your heart dragging the ground with tears the size of an ocean. Your soul so fatigued and alone.

It’s too much. Hunger. Cold. Flys. Isolation. Rejection. Abandonment. Emptiness. Dreams lost. Passions stolen. No one wants you. The illness is too much for people who don’t understand. The ones that do, they have the illness too, in their own way, fighting to survive or still live in the toxic world that’s killing them.

Your heart…. notice it. Feel inside of you now.

No one comes. No one comes. Your body is wounded by chemical poisoning and an immune system that is failing. You are dying, slowly. But your heart…. Your heart…. and no one one comes.

Sit with it for as long as you can. Feel everything inside your heart and body.

When you can’t take anymore of this imagery, open your eyes. Sit with yourself. Let it move off of you and look around. Ground. Center. See your life before you. And pray.

While you do that, while you shed the weight and the emotional energy that held you in this visualization, just remember one thing:

You can walk away. I cannot. It never ends for me. I can’t open my eyes and shake it off.

It never, ever, ever ends for me.

I can’t open my eyes and make it go away.

This is my life. The life of a woman in a desert bubble due to Environmental Illness, an Anaphylaxis Syndrome, where life is a dangerous, tenuous place to be.

Written by a desert warrior for MCS AWARENESS DAY, May 12, 2017

If you participated in this visualization, please comment.

SHARE promoting MCS (Multiple Chemical Sensitivity) Awareness …

~ Raven

Want to know something EVERYONE can do to make a difference?
Be fragrance-free!

Choose products without fragrance, aroma, parfum, or essential oils.
One of the biggest impact things you can do is that simple!

This reduces everyone’s toxic load and the risk to developing a disabling  environmentally linked illness, and it makes so many things, people, and places more accessible to the growing number of people who are already disabled by the pollutants that are so common in our daily lives now.

Of course there’s more involved, especially for people with more severe MCS, MCS/ES, and MCAS, but the simple act of choosing different products for laundry, personal care, and cleaning will make a real difference in our world!

2 responses to “An MCS Awareness Visualization

  1. That was one of the bleakest things I have ever read… and I am glad it is not me…not yet anyway. I feel lucky at this point to have as much health as I do. Is this your story Linda? If so things have improved some.. the situation. I came to this page today because I searched this site for anaphylaxis .. had my third one last wk.. the scariest so far.
    I looked it up and found this
    “Following up patients after treatment for anaphylaxis.
    Unsworth DJ1.
    Author information
    Anaphylaxis is defined as a severe, life-threatening, generalised or systemic hypersensitivity reaction. Diagnosis is based on the presenting symptoms and signs which classically develop rapidly, typically evolving over minutes but in some cases hours. Various combinations of airway and/or breathing and/or circulatory problems are possible, as well as urticaria, and hypotension. Skin and/or mucosal changes (typically urticaria and/or angioedema) are seen in around 75% of cases, but importantly these features alone are insufficient for a diagnosis of anaphylaxis. As soon as possible after successful emergency treatment, timed blood samples should be taken for the mast cell tryptase (MCT) test. Serum samples need to be taken within 1-2 hours but no later than 4 hours from the onset of symptoms. It is important to document the acute clinical features (record BP, respiratory rate etc) and the time course of the onset of symptoms/signs and their resolution. Because of the risk of relapse patients should be observed for 6-12 hours after the onset of symptoms. Children under 16 years should be admitted and supervised by a paediatrician. An adrenaline injector device for intramuscular use only, should be prescribed as an interim measure before referral to a specialist allergy clinic. Referral to a specialist allergy service (or specialist paediatric service), is strongly recommended. Diagnosis can be confirmed, and further investigations organised.”

    I did not get this sort of followup and was wondering if others who have MCS and anaphylaxis attacks have had this followup.

    Whoever the author was I hope things have improved for them … I cannot put myself in a meditation to experience this as I am not well enough to risk it I think that is an experiment for the healthy.

    If you have information on on anaphylaxis and how it may be related to MCS I would appreciate it if you could link it to this site.
    Thanks Sandy

    • Hi Sandy.

      This was a guest post, not my story.
      I do not experience anaphylaxis (came close with hives and breathing problems from essential oils and henna a few times in the 80s, but thankfully started avoiding them and it hasn’t happened since then).

      Look into MCAS/MCAD.

      Mast cell issues are something that a lot of people have developed. I am not very familiar with this line of research as I do not get the same kinds of symptoms and haven’t had the energy to study it well.

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