To the Person who Thinks This Illness is in my Head

From the prospective of someone with a strong constitution, it can seem like people with chronic illnesses are whiners. I’d like to address some of the myths you might have about people like me.

But first, I would like to extend myself to imagine why you have the perspective you have.

I imagine that your body has endured all sorts of illnesses and breaks and bruises and you overcame them all. I imagine that you feel confident in your body’s ability to heal, confident enough that if you feel ill, you are sure that an aspirin, a glass of water and a good night’s sleep will have you feeling good again in the morning. You rely on that, even perhaps take it for granted. I’m guessing that you have even gone through something really hard, like a shattered bone or overcoming breast cancer. In that case, doctors helped you. They knew what to do and they fixed it. And it feels very clear to you that they deserve your trust and they deserve to have that confidence they have.

 

Further, I imagine that you perhaps have a beloved pet that can sleep right in your bed with you and you feel fine. I imagine that you can put any type of cream or sunscreen on your skin and it doesn’t burn. I imagine that your disposable income can be set aside for things like vacations, eating out, alcohol, your childrens’ education and your 401K instead of on medical attention and supplements. 

 

I imagine that you get up every morning and work hard, even if you don’t feel good. I imagine that you provide for your family and that it is not easy to do that in today’s economy. I can understand that you would like every one to pull their own weight so that your wages don’t feel garnished in order to benefit people who aren’t working.

 

So let’s start with that one.

 

Myth #1–We are malingerers or are lazy. Let me assure you, most people who have chronic illnesses work our asses off. When I first got ill, it was a challenge to just get to the bathroom. In the early months, before my diagnosis, it was impossible for me to prepare a meal, eat it and then clean up without having to lie down once or twice. The unpaid work of daily survival– laundry, shopping, paying bills– was more than I could handle. But I pushed myself everyday to the absolute limit of what I could handle, and found time to research what the hell was wrong with me.

 

This is the point I want to get across. In addition to the normal daily tasks of living, people with chronic illnesses must find extra time– the time that you are relaxing with your family– to research and implement solutions to the predicament we are in. There is never a day off.

 

In my case, the diagnosis was mold illness. People with mold illness work more than you can ever possibly imagine. As it became clear to me what the problem was, the solution is to wash everything every day. As you do this, you get more and more sensitive to smaller and smaller amounts of mold and mycotoxins until your system has a chance to rebound. This process can take a year or two.

 

Have you ever had to hand wash your laundry? I had to stop using washing machines months ago because they make my system go haywire. When I am able to wear clothes or pajamas more than once, I am thrilled. Less laundry to do by hand. Everytime I go into town, I not only have to wash my clothes, I have to deep clean my car. Every. Time. Town is 90 minutes away, so I try to go only once a week. Once I got my checkbook out to pay a bill and got spores all over me. I had to change clothes and wash them by hand. It’s winter, so that includes several layers. I have to wash bedding once or twice a week. It’s a workout every time.

 

My point is, you can’t even wrap your mind around the physical labor I have to do to simply stay out of physical pain. I am a hard worker, but I have never worked so hard while feeling so awful as I have this past year. That is saying something because right before I got sick, I was working my ass off getting my masters in Social Work as a single mom. I finished with a 3.94 GPA, got my degree, got my license, got a job with benefits and less than a month later, I got really sick. The reason I have made progress on my health is that I am tenacious as hell and I work my ass off. But not for money.

 

Myth #2 We are hoping to benefit financially from a disability.  Unfortunately, the rule for people with long term illness, especially mold illness, is total financial devastation. It’s not hard to imagine why. When daily survival is more than you can manage, taking on the responsibilty of a job is out of the question. Inevitably, the meager benefit that Social Security Disability Income (SSDI) provides may keep people from starving to death, but it is far from being enough to create or restore health.

 

In my case, I have not yet availed myself of that benefit. It’s really hard to get and I frankly have just not even had the time to apply. I am living off rental income from a house I renovated before I went back to grad school. Plus my parents and friends have helped me as much as they can. Plus I am living cheaply.

 

How cheaply? Since my illness is environmental in nature, the “cure” is environmental too. I am living outside in a wilderness area. No cell service, no flush toilets, no internet, no electricity, no radio waves. I am camping. That’s how cheaply I am living. I am still not making ends meet because I need medications and tests. I already bottomed out my home equity and cashed in my 401K. Do I think you owe me? No, I don’t. But if society kicks in for buying me food, I will take the help, because I fucking need the help.

 

Like a lot of people with this illness, for a long time, I was too sick to get myself anywhere. I couldn’t travel. As soon as I could, I used my bootstraps to get my ass to the wilderness. It’s working. I absolutely have to stay here if I want to have any hope of recovering. I hope I don’t lose my house because I got sick, but that happens everyday in America. Should it?

 

Myth #3 Sick people like attention.  I’m not going to say that’s not true for some people. But if you think that the 13 months of hell I have just been through feels worthwhile so that I can whine about it in this blog post, you are mistaken. You will find an inverse correlation between when shit went south in my life and when I posted on Facebook, for example.

 

Over the last year, I didn’t tweet about it when I sprained my ankle, broke my tooth or fell down the stairs and messed up my shoulder. I didn’t even mention those to my doctor. I didn’t post it on Facebook the day I experienced neurological immobilization from my contaminated car followed by a panic attack in front of a complete stranger, then a second one in front of my dad, my son and my foster son. I didn’t broadcast it when my remediation didn’t work or when I realized I needed to leave Maine because I woke up covered in frost. Or, once I reached “sunny” New Mexico, when I tried to sleep in my hammock in horizontal 30 mph wind and sleet because my car got contaminated. Or when my bedding got so contaminated, washing it 4 times (by hand) didn’t work and I had to throw it out. There are a hundred more stories that I never mentioned to anyone.

I want to make a distinction between the “Poor me! Take care of me!” kind of attention I imagine you detest (so do I) and the “staying connected to life” kind of attention I really do need more of.

 

I am lucky. So lucky. I have dozens of people who love me and are pulling for me. Not everybody has that. But despite all that love, I have been deeply alone. This is an isolating illness. Being around people can make you sick. I lost my home, my job, my relationship, my community and time with my 12 year old son. I missed half of his 5th grade and am in the middle of missing his entire 6th grade. And incidentally, the single most compelling thought that has cemented my commitment to staying alive is that he might have to endure this genetically-informed illness someday. He will not have to endure this level of psychic solitude if, God forbid, he ever has a similar experience.

 

I have felt tethered to my former self only by the thinnest, most diaphanous thread. A single corn silk. I have felt trapped inside a body that flares up at the most minute toxin. I have felt gratitude at being able to connect online with the thousands of other people who are experiencing a similar hell, but that is tempered by the scary desperation they also feel. I have had to limit my participation on the forums to safeguard my own mental health.

 

So maybe this myth is partially true. I do need attention from people who love me. I need people to check in and reach out and take a minute to remind me that I am still important to them in their lives that have continued just fine after the death of my former identity.

Myth #4– Chronic Illnesses aren’t “measurable.”

While it can be difficult to find which biometric markers correspond with a person’s unique symptoms and it can be REALLY hard to find a medical practitioner who knows what to measure, this illness is clearly medically determinable. That means that once you know which lab tests to order, you can clearly measure progress and follow clear treatment steps to improve inflammatory markers. The treatment works!

When you descend down the rabbit hole of this kind of illness, you get acquainted with lots of people who have it worse than you do. There is a constant reminder of the possibility of losing the struggle. People become “locked in” inside their bodies, unable to do anything other than lie in a dark room 23.5 hours a day. And if that room is toxic to them, too bad. Happens all the time.

What is really going on. I would like to remind you that there is a long history of the medical establishment concluding that anything they can’t explain is “in your head.” This is especially true when the patient is female. You might be interested in this excellent TED talk by Jen Brea on this very topic.

 

In the case of mold illness, the diagnosis— and the treatment— are relatively new (30 years old). That’s because the illness itself is new. It is just beyond the horizon to most medical practitioners. Luckily, I was able to get connected to one of the handful of practitioners who knew how to treat it, and I am getting better.

 

Let me restate that. It’s not in my head because there is solid medical science that understands what happened to me and the proof is that the treatment is working for me and for thousands of others. The first doctor I saw, however, thought it was in my head because he didn’t know about this illness yet. He was a generalist PCP. It was beyond his horizon. Of course it was.

 

You know why this illness was just beyond the conventional horizon? Besides being new, it is insanely complex and parts of it are beyond what current science allows for. One brilliant doctor has determined which five indoor molds are the most dangerous and that about 24% of the population is genetically vulnerable to them.

 

They are also aware that each these molds can create several different chemical byproducts, mycotoxins, depending on what other molds they are competing with in the same colony. Some of these mycotoxins are sticky, some are easy to remove. Some are benign, some will make you pass out. The variety of internal reactions that people have is also dizzying. People can have different reactions to the same toxin. The handful of symptoms that I have experienced in the last 24 hours? Headache, sore lungs, sore throat, kidney pain (both sharp and dull,) neurological tremors, eye floaters, itching, insomnia. They all go away (except for the floaters) when I get away from mold. So I’m constantly trying to get away from mold. 

How can it be real when you haven’t heard about it before?

Because when people get sick in this particular way, they disappear. Every last scrap of energy and money for the survivor (and often their families) is reserved for survival. But there have been efforts to remember the Millions who are Missing. Here’s a documentary about how sensitive people disappear from society. 

If you haven’t been personally touched by this, it can sound unfathomable. Here’s more media that can help you fathom it, if you care to.  Unfortunately, because it’s a predictable outcome of environmental damage, you will hear about it more and more in the coming decades.

Science is helpful. Except when it becomes too convinced of its own efficacy.

 

Since World War 2, there have been tens of thousands of different chemicals released into our environment. Some of them are tested for safety. Think, however, of the permutations of chemical interactions between each of them. Is anyone tracking that? No. It’s quite a Pandora’s Box.

 

Species extinction, autism, Alzheimer’s, autoimmune disorders, cancer, colony collapse disorder. It will become clear in the coming decades what all these issues, and others, have in common with the illness that has afflicted me. It was over a decade ago that the New England Journal of Medicine declared that this current generation of American children is likely to live shorter, sicker lives that their parents.

 

We, the sensitive ones, are the canaries in our collective coal mine. Science has yet not figured out how to measure all the ways that humans have fouled our nest. We canaries may be able to feel it before scientists have figured out how to measure it. We are valuable to society because of this very fact. If a scientist has not figured out how to measure a problem, it most certainly does not mean it is in our heads.

For the 76% of people who seem to be largely unaffected by mold, congratulations. I am sincerely happy for you and hope to join your ranks someday. But just as I was able to extend myself to try to understand your perspective at the beginning of this essay, I hope you will make an effort not to conflate your experience with “Reality” (with a big R.)

 

Progress will only be made with acknowledging the multiplicity of human experience. Thanks for listening.

 

A Dear John Letter to Civilization

Dear Modern Civilization,

I know you have felt this coming on, but it is clear to me that we need to spend some time apart. It’s not you, it’s me. Well, no, it’s almost totally you. It’s just that I can finally see you clearly.

I have developed the most wretched superpower: I can feel all your toxicity. It’s like becoming an X-man.  Legions of micro-organisms have mutated to adapt to the polluted environment. There are about 24% of humans who, like me, are genetically susceptible to biotoxins (lyme and its co-infections, mold, ciguatera and pfiesteria.) The biotoxins produced by micro-organisms are becoming more toxic in response to burgeoning chemicals in our environment. Anyone can get sick from them, it’s just that one in four of us struggle to heal. The biotoxin burden is in addition to the toxic burden from the chemicals themselves. One study found and average of 232 chemicals in the umbilical cord blood of newborn babies in the US.

So I’m so grateful that scientists have finally found a treatment that works for people like me who get really sick from biotoxins, but unfortunately a side effect of the treatment is an extreme sensitivity to chemicals that renders just about everywhere unsafe. I need to find somewhere that doesn’t have chemicals or mold, now that I am so hypersensitive. That’s why I need to leave you.

I have really always known something wasn’t right. But you are so cozy. Truth be told, I’m scared to death to leave you. I haven’t ever been on my own without hot showers and electricity for very long. I’m pretty rugged, as girls go. I have hiked the Himalayas, kayaked in fjords and camped by myself in super-remote locations. But I always got warm and clean afterwards. I always had a credit card and a plane ticket to somewhere.

I really love flush toilets. And the internet! OMG, I can’t even imagine going without that for very long. I have loved having my own private transportation vehicle that I can use day or night in all kinds of weather and the limitless ribbons of asphalt laid out for my travelling pleasure. I know it is only the tiniest sliver of evolutionary time that a single female human would be able to own one of these and hit the road.

I am aware that I am incredibly fortunate to have been born during this era and in this country, with all the luxuries that are considered normal. I really did enjoy it…even though I have always known there was something wrong with it. I have never really bought my own rationalizations and have despaired at my inability to live with integrity of what I knew to be true: living this way is unsustainable.

I have tried, really tried, to be more mainstream so that I could be happier with you. But I can’t rejoice in an expanding economy. I am horrified that humans are causing the sixth mass species extinction and that we are currently breezing right past the climate change tipping point. My meager attempts to mitigate the damage I cause just by being a modern American are inadequate. This I have always known. Recycling? CSA? Efficiency appliances? Come on now.

Yet I am still a human animal. I am fiercely and irrationally interested in the preservation of my son’s life, no matter what the cost. I am concerned with social justice because my fellow humans deserve dignity and safety and a fighting chance. But there are so many of us. I know. The non-humans deserve a shot too.

I have always known that indigenous people who live within an ecosystem without dominating it have a lot to teach us. What we are doing is clearly not going to continue for much longer. One hundred years, maybe? A blip. When I live my rural little life in coastal Maine, far away from malls and highways, I can almost forget that our clothing swaps and organic potlucks are not the norm.

When I come out into the mainstream, onto the interstate corridors lined with strip malls and franchises, I feel sick. Not only because I really am physically sick, but because the conventional opinion continues to be that this is ….progress. This is the progress of lemmings.

So here it is. There is always a leading edge, where the wave just starts to tip over and break. Likewise, canaries feel the toxic breeze first. Those of us with CIRS have developed the canary superpower of perceiving toxins that others can’t feel. What will follow in the coming decades is an avalanche of data to show that all of our major epidemics– Alzheimer’s Disease, Autism, Diabetes, Cancer and chronic illnesses–are being caused by or correlated with the complex toxicity in our modern environment.

Anyway, I need a break from you. Believe me, I have tried every option that would allow me to stay with you and with my son. Now I’m going to drive my personal transport vehicle to the very edge of you and see what the air feels like to breathe there. I found a place to camp in the high desert that has a flush toilet, a hot shower and wifi, but no mold and almost no chemicals. I hope it works to allow my system to calm down and become less sensitive. If it doesn’t work, (note from the future: it didn’t work,) and going the edge of you isn’t going far enough, I will have to figure out how to go feral out into the wilderness.

Holly

 

 

 

Forced Exile with a Tailwind

Yesterday I found myself walking around a neighborhood north of Cincinnati, Ohio, tears rolling down my cheeks as my eyes passed over the 1970s ranches. Eight out of 10 of them has Trump signs in their front lawns. I was walking to warm up, since it was not quite 50F, and I am still living outside on November 8th, 2016. I was also walking just to ground myself in the rhythm of walking and breathing. The surreal news that Trump had just won the election had started to feel real as I turned onto a road that wasn’t there when I was a kid and was lined with Tudor style McMansions.

There were no weeds anywhere on the lush, green lawns framed by the same bland landscaping in front of each house. Each house is full of consumer goods, electronics and earnest, slightly overweight white mid-western humans who feel deeply that this “way of life” is their God-given right. One closed their automatic garage door, sealing in a solid-packed wall of bright plastic belongings next to their shiny SUV. Another pushed one of those machines along that spun Scotts fertilizer pellets out onto the lawn in an even pattern.

I do not belong here.

To be fair, I have felt like I don’t belong here for decades before this horrendous day. My parents moved here 40 years ago when I was 6. I have also had that sense of blanket resistance, that “this ain’t it” feeling, in many other locations and eras in my life. But never have I felt it more acutely than I do here now in Ohio. There are no health food stores, but  there are fifty different fast food options within a mile from home.

Never have I been this nauseous at the thought that a campaign of hatred, fear and misinformation could lead MOST of the people around me to somehow rejoice that an incompetent, narcissistic demagogue had “saved” the country last night.

But for this to happen while I am still sick, while I have been squeezed out of my own life like toothpaste out of a tube….it is simply more than I can process. I am crying for all the people, including children, who already feel less safe just walking through our society. I am crying for our country’s daughters who did NOT see a woman get elected (even though she won the popular vote,) but instead saw a man brag about grabbing women by the pussy and then, weeks later, ascend to the most powerful job in the world anyway.

I’m crying because all these perfect houses and lawns are poisoning the Earth and poisoning me. I have an “environmental illness.” That means, in a nutshell, that my body has become so allergic to modern human civilization that I must leave it. I am heading to a barren, secluded homestead in New Mexico that is surrounded by nothingness. It is dry, at 4000 feet altitude and 26 miles away from the nearest small town, which is in turn 150 miles away from the nearest city.

I have CIRS, Chronic Inflammatory Response Syndrome. Mold illness. Eleven months ago I had just moved into a moldy house and had just started a job in a moldy agency. It was a matter of weeks before I collapsed and spent months writhing in pain and unable to sleep. I was terrified when my doctors told me they had no idea what was wrong with me.

That’s when the structure of my life started to squeeze me out like a tube of toothpaste. I had to leave that house that my son and I shared with my boyfriend and leave most of our belongings behind. My boyfriend didn’t keep in touch. Then went what was left of my savings, then I lost my job. I tried to move back into my own house, but had to go through a grueling, expensive remediation before I gave up on it. (Thankfully, the boyfriend came back and helped.) After having spent all summer sleeping outside and making progress on my health, it got too cold in Maine. When I stay indoors, I get sicker. So I had to leave my state and leave my son behind. The final touch was that I needed to buy a different car and get all new clothing and bedding. My identity has shattered like a mirror dropped from the roof onto concrete.

Now when I look down at myself, I see someone else’s Walmart clothes as I walk though this mid-Western suburb full of Trump signs in a country that will soon be run by President Trump. I squint into the sun.

Who the hell am I now?

It’s true, I don’t belong here. But I’m also terrified to leave. I feel nurtured and cozy and safe here. These feelings are intertwined with all my judgment and malaise. At least the crappy I feel now is familiar.

Somehow, fleeing Trump’s America dissolves some of my ambivalence if I have to do it. But there is still terror. This illness requires people to jump off cliffs into the unknown while we are sick. Over and over.

Anyway, I have no choice.