Have You Seen This Person?

Friends–This post isn’t about youth ministry. It isn’t about God. It’s not even about Christianity–at least, not directly. It’s about people–me and you–and it’s about life. I wrote it about two weeks ago. It’s longer than usual, because it’s more story than blog post. Thanks for experiencing it with me …

The rain is beating against the top of the tent as I write this. I’m sitting on a blue, nylon cot, my back aching for lack of a normal chair. Caleb, on the green cot a few feet away, is peeking out at me from inside his sleeping bag. Hopefully soon sleep will overtake him for his mid-afternoon nap. Occasionally I reach up with a black Maglight flashlight and push the puddle off the roof of the tent, so it doesn’t begin to drip through. It’s been dumping rain like this for the better part of two days.

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All told, I’ve spent more than 2 years of my life camping in tents. I’ve endured Idaho rainstorms so powerful that the wind rolled tents down the beach–with people still in them. But this is the first one I’ve sat through on the back patio of a house. Why? Because Caleb and I simply can’t go inside.

It started about 5 years ago, when one winter I realized that I had depression, and I had it bad. Like, severe-clinical-depression bad. Like, curl-up-in-a-fetal-position-and-bang-your-head-repeatedly-against-the-couch bad. (Yes, that happened.) Like, say-all-sorts-of-words-you-should-never-say bad and I’m-so-mad-I’m-afraid-of-myself bad and I-feel-like-a-coiled-spring-ready-to-explode bad. It was beyond painful. Painful for me. Painful for Liz. Painful for ministry.

I sought help. I took antidepressants. I tried to rest more. I used light therapy. I worked for balance in my life. I read books. And it all helped some. But life was still absolutely miserable. For three winters I lived with the shadow of death in the passenger seat. Even though life went on, and–by God’s grace–ministry thrived, at times it felt like too much to handle.

Living in the Pacific Northwest, the doctor diagnosed Seasonal Affective Disorder (S.A.D.) and told to take more vitamin D. I went to counseling. Exercise and sleep were supposed to help. But nothing did. I gained 20 pounds. I had frequent headaches. I had bruises all over my body because I struggled with balance and coordination. I felt tired all the time. In the summers, breathing the clean air of central Idaho at rafting camp, I could work with seeming endless energy; in the winters, I’d come home after a day of work and collapse on the couch for the evening. My brain would fade in and out–sometimes I could think absolutely clearly, and other times I could hardly put thoughts together.

And the emotions–oh, those were the worse. I remember describing it like ‘emotional sunglasses.’ Everything was darker. If something was bad, in my heart it was really bad. If something was good, in my heart it was merely ok. Nothing was as it seemed. I lived in fear that one day my angry outburst or emotional meltdown would happen in front of a group of students, and I would do irreparable damage. (Thankfully, that didn’t happen.) I begged God to protect me from myself. I pleaded with him to take my anger and sin away, but nothing changed. My prayers seemed to bounce off the ceiling above me. In those moments, I felt absolutely alone.

Interestingly, all of this began at the same time that we made a couple of significant moves in our life. For starters, Liz and I bought our first home. We moved from an apartment complex with electric heat to a home heated by natural gas. At work, I moved into a new office in a building that had just been remodeled–new carpet, new paint, and new Pergo flooring. Around the same time, I took a very strong medication for a skin infection–one that required consistent blood testing to make sure it didn’t damage my liver. These toxins were dumped into a system already stressed by years of asthma medications. In hindsight, it was a molotov cocktail of toxic chemicals that would completely change my life.

It wasn’t until three years after those events that someone first mentioned Multiple Chemical Sensitivities (MCS) to me. My fight with depression was still ongoing, and my sister, Kelly, had been recently diagnosed with MCS. Multiple Chemical Sensitivities is a genetic disorder in which your body doesn’t properly process and dispose of toxins, specifically toxins that come from chemicals. Of course, we’re all exposed to toxic chemicals everyday–in our air, our food, our cleaning supplies, our soaps and shampoos, our deodorants, our electronics, our cars … the list goes on and on. Although not helpful to any of us, for many people the response to these toxic chemicals is mild or largely unnoticed. For the person who struggles with MCS, the outcome is life-altering.

Our first step was to turn off our natural gas furnace. At the same time, I was no longer working in the recently remodeled office. The immediate changes were clear and astounding. I lost 25 pounds in 10 weeks. More importantly, I lived through an entire Pacific Northwest rainy season without any depression. My thinking was clear again. My emotions were normal. I had energy to work a full day, and then engage at home. The anger was gone. It was incredible! It felt like we were well on our way to health again.

Or so we thought. Our next big battle with chemicals came soon after our move to Europe. We moved into a temporary apartment in Romania while we discerned our next steps–an apartment with natural gas. Caleb, suddenly, was a wreck. And so was I. We could be playing happily in the living room, walk by the kitchen–where the gas hot water heat was–and be in a full-scale fight by the time we got to his bedroom. It was like turning on clinical depression with the flip of a light switch.

We started to notice it in other ways, too, with Caleb. When exposed to chemicals, disciplining him was a lost cause. Normally, Caleb responds well to discipline–a loss of privileges, or a well-timed spanking, and he turns his attitude and is responsive. But when he is ‘toxed’ by chemicals, it is a totally different story. Like a druggie on a ‘fix’, he is no longer in control of his own emotions. Any attempt to discipline simply escalates an already painful situation. I know this, because it is the same for me when I’m toxed. Like someone on drugs, I’m out of control–literally.

When facing toxic chemicals, Caleb exhibits the classic symptoms of ADHD. He becomes hyperactive and impulsive. He can’t sit still. He’s combative and argumentative. And not just a little, like any three-year-old might be. At its worst, it’s as if he becomes a totally different kid.

Interestingly, chemical sensitivities and food allergies often go together. When we brought Caleb home from the hospital, he cried 16 hours a day for the first 8 weeks of his life. At one point, he went 13 days without a bowel movement. When Liz removed dairy and soy from her diet, and then eventually wheat, chocolate, and nuts, we suddenly had an entirely different child on our hands. But it wasn’t until we drastically reduced his exposure to chemicals that we saw his skin rashes go away and his bowel movements become normal. Our bodies are remarkably connected.

Which brings us back to why Caleb and I are sitting in a dome tent outside a house waiting out a rain storm. It’s because this particular house–like most others–simply isn’t ‘safe’ enough for us to go inside. In this case, it’s probably because of newer carpets and paint. In other places, it’s because of natural gas. Hotels are out because of the strong detergents and cleaning products. Car rides are hard because of the foam in the car seat, or the sealant spray on the upholstery, or the gas or diesel from the engine. At this house, when I’m inside, I can’t even read. My brain won’t hold thoughts together long enough for the book to make sense. I’m constantly mad at Liz and I don’t know why. Sometimes I find her sitting against the side of the bed sobbing because of what I’ve said to her, and I don’t even really know I’ve said it. I can’t work or write–not even an email–because I don’t trust my own thinking. In fact, at it’s worst, I’m reduced to relying on Liz to simply survive. I can only access about half–half!–of my normal mental abilities. In fact, sometimes it’s so bad I can hardly stand without losing my balance.

So, why do I share this with you? It’s not for pity. In part, it’s explanation for why I haven’t written much in recent weeks. My MCS has been much worse as we’ve traveled, and I simply don’t have the brainpower to write. For those of you who are personal friends, it’s so you can better understand our journey. But most importantly, it’s because most people don’t know about MCS. Although it is highly documented, it’s not widely known, and I’d imagine that there are many people who unknowingly suffer. An estimated 1 in 10 U.S. adults report depression. Millions of children struggle with ADHD, autism, etc. And while I’m sure that MCS isn’t the reason for all of them, I’m also confident it is the cause for some. It saddens me to think that people suffer and don’t know the cause.

I’m glad that since my son has it, I do too. Imagine how differently I’d parent him if I didn’t understand. If you or someone you know might suffer from MCS, I’d be happy to dialogue with you, and point you toward some helpful resources.

An update: Since writing this, Liz, Caleb and I are back in Europe. Although it is still a constant battle, we feel better here. There are less pesticides, less chemicals, and–where we live–less factories. At the same time, we notice that my MCS continues to get worse. Over these next months, we’ll be entering a new phase of treatment, including specialized shots and even greater care in managing our environment. Amidst it all, we are thankful for opportunities to love young people, and tell them more about Jesus. I plan to be back to blogging . . . I hope you’ll join me as we think together about youth ministry.

  • Connie Patty

    This was such a good post Rob. Really helpful to all of us in understanding what you, Caleb and Liz are living with. Prayed for you this morning, for your continued pursuit of answers and help, and that God would be merciful to not only give you daily mercies for living, but lead you to answers that will bring substantial help and healing to your bodies. Thank you for serving Him in the midst of pain and suffering.

    • Connie, thanks so much for reading it, and for your prayers. We so greatly appreciate the prayers both for daily mercies, and for long-term help. Those are exactly the prayers that we need! We think of you and your family often in these days, knowing that you, too, have walked very difficult roads. Thanks for walking with us!

  • Thanks for sharing this Rob. My sister-in-law in Vancouver sent it my way. Within the last 8 months I found out I am gluten, dairy, egg, and yeast intolerant/sensitive. I can’t relate to everything you have described, but I can certainly relate to the tremendous affect it has on my mood. Before discovering the problem, my wife was fed up with my anger. Now it is dramatically improved, and I can absolutely notice when I’m being irritated from something I ate – I get this mysterious anger about the smallest things. My son is gluten, dairy, and egg sensitive as well – so I can relate to the issues with behavior, etc.

    We have landed on the Bulletproof Diet. It’s not designed specifically for food intolerances, just for everyone – but it is working very well and has a lot of tremendous info about food – even things you won’t find at most sites aware of food problems. He has done a very good job of tracing down sources of mycotoxins in food (and elsewhere) that may cause problems for you as well. I would highly recommend checking it out:
    http://www.bulletproofexec.com/how-your-house-can-make-you-weak/

    “28% of people have a genetically influenced innate immune response that gets turned on by environmental mold, but it doesn’t turn off. That data comes from Dr. Shoemaker, one of the most innovative experts in treating all forms of biotoxin illness. If you’re one of these people, you get exposed, you get sick, and you stay sick. Sometimes they call it Lyme (and it may indeed be lyme brought on by the innate immune response allowing the lyme to proliferate), sometimes they call it chronic fatigue or fibromyalgia or multiple chemical sensitivity. It’s not. It’s one form of mycotoxin illness. It causes subtle changes in your vision.”
    (Here is Dr. Shoemaker that he is referring to http://www.survivingmold.com)

    Definitely watch his video that he links to in that post. It is very, very informative.

    Also, http://www.bulletproofexec.com/the-top-three-mistakes-youre-making-on-the-bulletproof-diet-and-how-to-fix-them/#comment-542633249
    http://www.betterbabybook.com/liver/

    All that being said, the Lord grants us these hardships to keep us from growing content with this world and make us yearn for the new heavens and the new earth, so set your eyes upon Him!

    • linda

      MCS can be caused by a number of different things.

      It can be solely from chemical exposures, or occurring with Lyme Disease or mold injury or pharmaceutical injury too.

      Also, all the wireless radiation (which is known to affect the blood brain barrier) is making people hypersensitive to EMF and EMR and also causing chemical injury in the brain.

      There are over 200 neuro-toxic chemicals in wide use, some are found in our laundry and personal care products, and this isn’t helping any of us.

      Not all people with MCS have mycotoxin illness or Lyme Disease.

      There can be significant overlap, but they can exist independently too…

      I am seeing a lot to suggest that CFS/ME and mold /mycotoxins are very much connected, but again, it doesn’t appear to be so for everyone.

      GMOs in our diets are causing big problems in people’s health too. They were widely rolled out in the mid 90s, and are found in almost all processed non-organic foods.

      Molds and mycotoxins weren’t such a big problem either until so many materials were made from toxic chemicals.

      It’s not easy, but avoiding toxic petro/chemicals, molds, wireless and GMOs is a good strategy for everyone’s health and well-being.

    • Brandon, thanks so much for sending this my way. This is very, very interesting. I’ll spend some time looking at what he is saying, and seeing if it fits my situation. Thanks for taking the time to comment–I really appreciate it.

  • linda

    I’m sorry you and your son have to deal with MCS. It’s not easy when we live in a world where toxic chemicals and GMOs are allowed into so many things we have in our daily lives.

    I hope you are able to make your home environment as chem-free as is humanly possible, and can find good organic foods to eat.
    Our home is our “cast” and we are what we eat…

    Also, Dr Martin Pall (who wrote a chapter about MCS in the main toxicology textbook) has good info and a supplement protocol on his tenthparadigm website, which helps regulate some of the things that go screwy in our bodies when we’ve been chemically injured (MCS, fibromyalgia, CFS/ME, and a number of other modern health conditions are also included).

    My own blog has a lot of resources on environmental health and MCS as well.
    http://lindasepp.wordpress.com/

    • Linda, thank you for the recommendations. We’ve been doing a lot of reading about MCS (as you can imagine), and I’m always interested in more recommendations. I agree, it’s a hard road to walk in this world! How long have you dealt with MCS?

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