Multiple Chemical Sensitivity: What’s Wrong with Me? – Part 1

Speed limit numbers are slow here.

Other than that, northern United States is like southern Canada.

But confusing speeds in a new country are a minor hassle. Marie is consumed with rising hope for decreased pain and increased mental clarity.

Checking the miles-per-hour, she remembers back four decades to early struggles with her health chaos.

Back then, Marie loves 7th-grade math. In her blue folder hides yesterday’s test with a red “A” scratched on the top corner.

But today she’s confused.

“Mrs. Wilson, I don’t understand the formula.”

Yellow chalk squeaks on the blackboard as the teacher explains this problem for the fourth time.

“I’m confused, Mrs. Wilson. Which side do we solve first?”

“I explained it, Marie. Start on the left.”

“Then what?”

Classmates grows impatient, along with the teacher.

“Marie, you know this. You got 100% on the test. Let others ask questions.”

Marie hates days like this when confusion jumbles her memory.

To her left, a girl leans in. “If you weren’t so lazy, you’d get it.”

“Airhead!” A boy behind adds insult to emotional injury.

Marie is used to words like these. But the mean words still sting.

Bullies often tease Marie, sending her anxiety and  self-worth in opposite directions. She hides her vulnerability under a pleasant, tough exterior.

Marie also compensates by studying daily for hours. She’s immensely curious. Teachers affirm her as one of their hardest-working students.

On better days, positive relationships with teachers raise her self-worth.

That evening, her father sits beside her on their brown couch. Home from his telecommunications job, he’s determined to help his daughter.

“Concentrate and you’ll get this,” he encourages.

But sad wet tracks appear on the student’s cheeks.

“OK, Dad,” she sniffles, forcing down emotions emerging from nowhere. “Can you not talk so loud?”

“I’m talking softly.”

“I don’t know why sounds are so loud for me.”

“You have sensitive ears, Marie. Why are you crying again?”

“I don’t know. I’m not sad. And…and I’m trying to stop.”

Marie craves a good relationship with her father, but this crying doesn’t help. She silently gets mad at her uncontrollable emotions.

“Stupid tears! Why does sitting with dad make me cry?”

Marie stops at an interstate exit in the middle-of-nowhere Montana to stretch and make lunch.

Is her stomach pain caused by stiff driving muscles? Or from her medical condition flaring up again?

Maybe she’s hungry.

After stretching, she puts carrots, zucchini, and onion into a pan of rice. Marie tops the vegetables with pepper, oregano, and rosemary. She plugs her cooker into the vehicle’s 12-volt receptacle and puts on her seat belt.

Marie drives south with her meal slowly cooking. Hopefully, food won’t cause a reaction today.

As cars rush past, Marie remembers back over her challenging life with pain.

Growing up, she lives in a frustrating alternate universe from others. She wonders if anyone else has these tough experiences.

Few can empathize.

Fewer try.

Then as a young adult, Marie is once again in the emergency room with a different doctor.

“When did this pain start, Marie?”

“At birth,” she chuckles. “I’ve lived with pain all my life, usually masquerading as other illnesses. This particular pain began five days ago.”

“We’ll test for a bladder infection.”

Marie laughs, exasperated. “I’ve had more of those tests than I can count.”

“Are they usually positive?”

“Rarely.”

“Have you had any surgeries, Marie?”

“I’ve endured so many surgeries, I hardly remember them all. Every doctor says their procedure will fix me.”

“These surgeries make you better?”

“So far, nothing brings the healthy life I crave.” 

Sometimes Marie wonders about the cause of her multiple chemical sensitivity–also known as MCS.

Could it be no-longer-used drugs given to her pregnant mom years ago?

Was it growing up with chemical clouds spewing from pulp mills in her northern Canada town?

Maybe she was born with this?

Marie may never know the origin of her frustrating health condition.

In fact, she lives four painful decades with these bewildering symptoms before finally discovering the medical condition causing her suffering.

Delicious smells of steaming food stop the van at a crowded rest area.

Marie scoops veggies into an organic, gluten-free tortilla and walks to a shaded picnic table. She hopes for the best and takes a bite. The potluck of flavors bring a delicious smile, lighting up this cloudy day.

Thankfully, her body doesn’t react negatively to the nourishing wrap.

She looks left to three people at the next table. Do they worry about food reactions? Probably not. Multiple chemical sensitivity is unique to a small percentage of people like Marie.

She breathes clean Montana air, clearing her brain. Fresh possibilities grow like the flourishing roadside flowers.

This adventure promises hope for a healthy winter. Marie stops worrying about becoming ill in a foreign country. Instead, she imagines herself breathing in fresh desert air.

While taking another scrumptious bite, Marie remembers back to another hopeful adventure.

In her late teens, she enjoys life at the University of Manitoba. Well, mostly.

Marie struggles to keep a clear mind and working memory. While she’s more outgoing now than as a child, nerves still interfere with speaking in class.

She often wonders, “What if I’m confused today and say something stupid?”

For four years, weird pains, reoccurring infections, and unpredictable illnesses interrupt studying. Her extracurricular activities are doctor visits and surgeries.

Marie’s third year is the worst. One day, she studies with a classmate in the library.

“May I buy your notes?”

“Marie, you’ve skipped a lot of classes.”

“I’d rather be in class. But I’ve been terribly sick this year. I wish I could live healthy like you.”

“I’ll sell you my notes, Marie. But I don’t understand. Seems easier to attend class.”

The year drags on as new obstacles appear in Marie’s path. Yet, the more difficult life becomes, the more determined and resilient Marie responds.

During this tough year, her grades put her on the dean’s list and gain a scholarship. Men are envious of this woman who’s rarely in class, yet excels in a male dominated field.

After four challenging years, Marie earns a Bachelor of Arts Advanced Major in Human Geography and Sociology. In graduation photos, she smiles with hope for a fulfilling work life.

Living with pain, sickness, and concentration issues has kept Marie from experiencing life like most young adults. So now she’s unsure what the real world is about.

And she’s scared to face it.

Years later on her international road trip to the desert, she’s filled with anticipation.

In spite of butterfly nerves within, Marie persists. Determination is her habit: her lifeline.

Stopping at a Shell gas station, she parks next to a blue car with an AAA sticker. This sends her memory back three decades to a call about her first job after university.

“Mom, I love my work at the CAA.”

“Why do you like it?”

“I love helping people travel. Plus, the Canadian Automobile Association’s health benefits are terrific.”

“Yeah, you do like helping people. How is your health?”

“I tell most people I’m fine. But Mom, many days are a struggle. Coworkers’ perfumes bother me. If they get close, I can’t concentrate. When I keep a distance, they think I’m unfriendly.”

“Sorry to hear that, Marie. Do you think odors were the cause of your pain and concentration problems all these years?”

“Maybe. All I know is I hope to do this job for a long time.”

Marie’s young adult life is a struggle. But she dreams of a healthy future in this terrific job.

Until the office floods.

Remodeling noise is annoying. But the difficult issue is her reactions to mold, paint, and cleaning chemicals.

Soon, health problems send her to the doctor for tests.

“Marie, you have a lump on your right thyroid.”

“A lump? What’s that mean? What do we do?”

“Take a biopsy. I’ll put a large needle into your thyroid. Then you swallow.”

“You gotta be kidding, doc.”

The results aren’t clear, so Marie endures another biopsy. But the doctor still can’t discover what’s wrong.

“Marie, we have to remove half of your thyroid. You can live with the other half.”

“Oh, wonderful. My 12th surgery! And none make me healthy.”

For months after losing part of her thyroid, Marie increasingly struggles to concentrate at work. Each day, her pain increases as she walks into the office.

Marie inquires about changing her office area. But management won’t accommodate her invisible medical condition.

She works from home for a short time, but co-workers begin to complain. Soon, management wants Marie back in the crowded workspace.

After six years working at the CAA, Marie quits this job she loves. Her employment hopes are crushed. But health demands the resignation.

Soon, she channels her energy away from struggling with health issues and constant pain. Marie begins a reflexology business to help others heal.

But this opportunity doesn’t go well.

Clients bring fragrances, pet dander, and chemical smells into her home. Marie doesn’t have stamina to wash clothes and deep clean her house every day so she can breathe.

Pain and confusion increase by the week.

Sadly, Marie stops her new business.

Driving south through Montana, she imagines her psychiatrist listening in the passenger seat.

Marie remembers back to the day this crucial relationship almost ended.

“You don’t need to see me, Marie. Your issues aren’t mental health.”

But the client disagrees and advocates for herself.

“Yes, I do! You’re the only supportive doctor I have. I can’t trust others to understand my issues.

“People around me don’t get it either. Last year at a wedding, some presumed to be experts on my life. They pointed to my coping mechanisms like laughter and determination to live normally. Then they said my MCS is all in my head.”

“It hurts to be misunderstood, Marie. Especially in relationships from which you hope for care and understanding.”

“It’s an empty ache. But, I stopped giving energy to people who don’t even try to empathize. I relate with people who care.”

“That’s good Marie, self-care through boundaries.”

“And focusing on helping others. I empathize with others who are misunderstood.”

“Using your pain to empathize with others is encouraging.”

“Who do you count on, Marie?”

“My mom. She listens and encourages. I feel understood and less lonely.”

“Your mom is a gift.”

“She is. So are you, doctor. Our relationship keeps me sane.”

As the Montana sun sets, Marie stops to sleep at a Flying J truck stop.

Most people appreciate the smell of recently cleaned washrooms. But Marie feels abdominal pain as she enters. The more she breathes in chemicals, the less clear her thinking.

Marie almost runs out of the building.

Minutes later, she prepares the bed in her van. She’s grateful for her fragrance-free home on wheels.

As she awaits sleep, Marie remembers back to past transportation problems.

Six years ago, Marie arrives late to her psychiatrist appointment.

“It happened again, doc. Perfumes and chemicals overwhelm me on the bus. I can’t figure out where I am, so I get off. Fresh air clears my mind, so I hop on another bus. Before breathing the bus’ air, I tell the driver where to let me off. Thank God I’m finally here.”

“I’m sorry you go through that, Marie. How are you deal with life’s frustrations?”

“I take life as it happens and try not to get mad.  Otherwise, I’d be angry all the time.”

Minutes later, the psychiatrist has an idea. “You can apply for government help with rides to appointments. Your depression helps you qualify.”

“Even though my depression is emotional swings caused by exposures?”

“Yes, exposure-caused depression will certify your need. Then, you can take taxis instead of being confused on buses.”

“Not getting lost would be a relief. Let’s do it.”

Like Marie’s hopeful excitement makes sleep elusive in this foreign country. She’s thankful anticipation keeps her awake instead of pain.

Memories continue taking her back to the change from buses to taxis. Back then Marie applies and receives fare assistance. 

Usually, Marie instructs taxi drivers to go to the pain clinic.

Marie loves avoiding confusion and arriving on time for appointments. Yet some taxi air fresheners still make her sick.

Pain clinic doctors have her try Gavapentin, Methadone, Codeine, Demerol, and then Fentanyl. They keep increasing medications to combat her debilitating pain.

But Marie reacts terribly to these meds. Body pain, bladder issues, blurred vision, cognitive impairment, and other reactions plague her.

After three years, Marie finally reaches her limit and takes charge.

“Doctor, I can’t live with my reactions to these pain meds. I’m done taking them.”

“But Marie, how will you endure the pain?”

“I’ll find a way to overcome. Like I’ve done my whole life.”

“If we do this, Marie, we’ll have to wean you off.”

“Good, this Fentanyl causes me to feel full with one bite of food. While it cuts the pain, I’m dying of malnutrition.”

Her Fentanyl patch dosage is incrementally cut over the next two years. Concerned about her pain, doctors suggest new meds and injections.

But Marie trusts her intuition and stops going to the pain clinic.

Fortunately, her life improves. A year later she’ll be kicked off transportation assistance due to overuse.

Marie begins her mind-shift toward trusting herself.

Close to the Wyoming border, Marie drives by signs for Yellowstone National Park.

She wonders if sulfur fumes from geysers and bubbling pools would aggravate her illness. Probably. She’ll stop to see these amazing wonders on her spring trip back to Canada.

For now, cold temperatures and this illness necessitate flying fast south to the desert.

As she turns west toward Idaho, Marie thinks back eight years to the life-changing discovery illuminating her condition.

After 20 surgeries—including half an organ removal—she hopes her physical issues are solved.

But they’re not.

In her mid-40’s, Marie again searches for answers.

After a Fibromyalgia board of directors meeting at the Society for Manitoban’s with Disabilities, she stops in the building’s library.

Symptoms in a medical book catch her attention. Some stick in her mind:

Adverse reactions to mold, fragrances, medications, foods, and/or electrical fields.

Reactions may include memory issues, impaired nutrition intake, and emotional swings. Pain in the head, kidneys, bladder, or intestines may cause one to be bed-ridden. 

“This is what I have!” she silently shouts.

A few days later, Marie sits in a quiet sterile room.

“I found my symptoms in a book. Doctor, I have multiple chemical sensitivity.

“It talks about brain fog, pain in various organs, and reactions to fragrances. Right now, I’m reacting to cleaning fluids and chemicals I could taste upon entering your office.

“I have to wash new clothes four times to get rid of chemical smells. If I don’t, I’m a well-dressed confused zombie.”

“Marie, remember your occupational therapist five years ago? She mentioned multiple chemical sensitivity.”

“Well, thank you very much,” Marie nervously laughs. “I didn’t know what she was talking about.

“The book also describes electromagnetic hypersensitivity. That must be my childhood problem with my dad. Sitting by him after his telecommunications job messed with my neurological system.”

“Well, Marie, multiple chemical sensitivity may best explain your symptoms. Let’s get you properly diagnosed.”

They work on insurance approval for Marie to fly to Nova Scotia.

But the medical hearing rejects Marie’s case. She obtains an advocate and six months later this life-saving trip is finally approved.

Her sister flies to Nova Scotia to assist. Marie is thankful for this understanding, encouraging relationship.

The patient endures blood draws, and tests for reactions to fragrances and chemicals. Marie is advised to receive magnesium IVs to combat very low levels of this essential mineral. She hopes she can afford them.

Finally, it’s confirmed. Marie has multiple chemical sensitivity, also known as MCS.

She’s relieved to finally know her medical condition. From now on, she can conquer the reoccurring pain, troubling illness, and periodic confusion.

Or can she?

In the coming years, Marie’s life will spiral downward until she tries to find health in homelessness.

This ends Part 1 of Marie’s story. Go ahead, stretch, get popcorn, and pull up a seat by the fire for Part 2: With MCS She’s Better Off Homeless.

Witness Marie struggle in unhealthy apartments, then reject them for a van. Join her depressing descent to rock bottom, then rise as her heart breaks for multiple chemical sensitivity sufferers. See her discover writing and photography, then become an MCS advocate.

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