Big Problems and Slow Solutions / Rants and Silver Linings

Creating a Balanced Life for the TILTed

My family, who keep me balanced,  balancing.

My family, who keep me balanced, balancing.

I got the most wonderful letter from a fellow canary which inspired me to some soul searching and a heartfelt conversation between us. She has graciously agreed to let me share her initial message to me and my response to her.

Hello and thank you for your wonderful website!

I am a 39 year old musician, teacher and “masked canary” trying to decide how to craft a beautiful life while dealing with MCS. At the moment, I am having to decide between a few different opportunities… I have a master’s in music offer at a school and have also been accepted into a premedical postbacc program which would be the beginning of a very long journey to becoming an environmental medicine doctor (ND, MD or DO). The third option I am considering is a 3-year Alexander Technique teacher training course (a mind-body approach for improving posture, poise and general well-being). The Alexander Technique would probably be the most health-promoting and happy path, but also one of the most expensive and I wonder if I can really make a living doing this post-graduation?

Over the past 10 years I have become increasingly sensitive to just about everything that was not created by nature and am now to the point where every decision I make is dictated by whether or not I will be able to survive in a given environment. Questions like these are at the forefront of my mind: “how many people will be in each classroom, are the rooms well-ventilated, what kind of cleaners are used, are the rooms carpeted, what kind of renovations have been done recently, how many of the students will be wearing fabric softeners, perfumes or have residue of scent from their home or car air freshers, etc.” I do not want MCS to be the #1 controlling factor in my life, but I also do NOT want to invite more chemical exposures that will cause further disruptions to my health.

I already have thyroid, adrenal and hormone imbalances that are not helped by the random chemical assaults of daily living. I recently had a 23andme test done and yes, am predisposed to chemical sensitivity (homozygous MTHFR C677T, COMT, MAO and other things affecting methylation capacity/ability to detox). I’ve known about the MTHFR bit for 2 years now and have been on pre-methylated B vitamins ever since which has helped, but not solved the problem entirely. I also have higher than normal levels of mercury, lead, thallium and a few other heavy metals. I have an upcoming appointment with my naturopathic doctor to interpret the results of the 23andme test and am looking forward to learning more about how I can further customize my diet/supplementation/lifestyle in order to best deal with these less than optimum genetic variations. Despite many efforts, my chemical sensitivities are getting worse over time and I realize that I must increase my toolkit if I am going to go back to school or do much of anything that requires me to be out and about in the world.

Do you have any advice about how to avoid limiting my life choices because of this chemical sensitivity issue? It would be nice not to have to be totally extreme and opt to buy a mini plot of land somewhere relatively pristine and build a tiny eco-home and live a monk-like life of eating wild greens and collecting spring water (seriously considering this option!). Though I may end up doing this eventually, it would be wonderful to continue my education before going this route. Surely, there must be a reason for all of this~ that I am meant to help others in some way through either becoming an environmental medicine doctor or eco-revolutionary of some sort, but I also do not want to compromise my health more than it already is by going back to school.

Any advice you have would be greatly appreciated!

All the best to you,
JM

Dear JM,
Though I was very moved by your message, I’ve been sitting on it for a few days because I just had no idea how to answer you. You’re essentially asking me what I ask myself every day and I desperately wish there was an expert we could both turn to. I also wish we could sit down over a cup of tea and have a long chat – seems like you have an interesting story to share and we seem to have many things in common. But I suppose today I will settle for an email response.

You say you don’t want MCS to be the controlling factor in your life, but here’s my truth – MCS is the controlling factor in my life. I manage to do a lot, enough that the casual observer might not even see how controlled I am. I do live in a normal neighborhood and can pull off some very normal seeming activities, but my home and my daily actions are not normal. That’s the trade off. I have managed to slowly increase my tolerance over the least 15 years, with the exception of some setbacks which all resulted from me overdoing some newfound tolerance and pushing myself too hard. Each health step forward has been a result of a different treatment or lifestyle change, confirming that this illness is a very layered thing. But the older I get the more I think that will never be able to truly recover, that I don’t have many more tricks to try. The recovery stories I know of all belong to younger individuals who were sick for a shorter amount of time or to a lesser degree.

So in the absence of a miracle cure, I spend most of my energy on those negotiations. If I worked outside the home, in an environment I didn’t control, I would have many more bad days when I couldn’t be the kind of parent I want to be. Or all my hard gained tolerance would be used up on work so that I couldn’t do weekend activities or occasional small travel with my family. Certainly, my overall health would spiral downward. I desperately miss working with people outside my home, focused on something other than my family. But the trade off would be too harsh – I’ve tried it and hate the crash that inevitably comes. So instead, I am trying to work from home with as much human interaction as I can manage and with some rewarding feeling of being useful. It is not the life I imagined. But the smaller, simple life I am building for myself lets me feel good enough to appreciate my life most of the time – instead of a full life that I can’t appreciate because I feel awful. No exaggerating, last time I tried to teach outside my house, I lost my voice and couldn’t teach. Last time I travelled too much, I went blind and couldn’t see the view. It’s self defeating.

That’s what works for me. My daily life is safe so that I can occasionally handle some exposure. Most exposures are a negotiated risk. And when it gets too much and I am sick, I have a safe life and home to retreat to. It’s what I do and where I do it for 90% of my time that lets me do the other 10%. If I risked it everyday, I …well, I tried that in my twenties and it really didn’t work out well. So now my goal is to have my everyday safe enough but still satisfying such that I am not constantly running into those MCS limits.

I do not want to ever advise someone to ignore their dream and all your choices sound like beautiful dreams to me – music, medicine, helping people. We shouldn’t have to make life decisions starting and ending with the question of chemical exposure but I do, and it sounds like you might be at a similar point. I am so very sorry. I really absolutely hate that fact and there are many days where I dwell on the issue and get very angry. But at my sickest, I made a list of what I wanted to do with my life if I survived and I am managing to do a version of those things, just on a very different scale. Can you enjoy music in your life without it being your career? Do you enjoy learning and teaching Alexander enough to try to make it your profession, even if it only pays part of the bills? Do you have the kind of resources (financial and family support) that you need to commence a long medical school training with the expectation that there will be some health setbacks? My counterbalance to all that “life is unfair anger” is the pleasure I get from doing a small version of my dream while still feeling healthy enough to do it again tomorrow. It’s sustainable and I will do almost anything to avoid the health crisis roller coaster again.

But that’s just me, and honestly, I am kind of worn down by fighting this thing. Maybe your passion for whatever you choose will see you through exposures and health problems. Maybe your new round of customized supps will take your body to the next level of healing and tolerance so that more choices are open to you. All opinion and supposition aside, here is what I do know…You are an articulate, resilient, caring woman. You are working hard to make thoughtful choices about your health and are still committed to helping your fellow humans. So I have absolute faith that you will find a way. Or find many different ways as your body’s needs change.

In more factual advice, make sure the things you can control you are doing right now. There are so many things you can’t control but you can control you. I can tell you are completely invested in making your own informed decisions so I am sorry if I am repeating obvious info, but make sure what you are putting on and in your body does not contribute to your body’s daily exposure load. We have no leeway, so the basics of good food, exercise, sleep and stress management are essential. Maybe you could use your current life as a testing ground to answer some of your what if questions. If you are going to be in the world a lot, then you have to develop some approaches to dealing with bad situations. Have you found the right words to ask your students to not wear fragrance around you? Can you get comfortable wearing a carbon filter mask when you travel? Do you have some recovery tricks to help with unplanned exposures? How many of the safe aspects of your current life can you transfer to another city?

It all sounds so …practical and even manageable when I write it down. But this is exactly what I struggle with the most, every damn day! How to live the most satisfying and useful life I can, on my terms rather than ones dictated by this illness? The price we pay for not finding the right balance is compromised health and eventually an inability to live any kind of real life. ARGH!

I am now tempted to delete everything I wrote and instead just respond with “I got nothing. Tell me what you figure out because I could use some inspiration myself.” Thanks for reaching out and please do keep me posted.
Virtual hug here,
-Amy

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4 thoughts on “Creating a Balanced Life for the TILTed

  1. Thank you for sharing this with us. Many of us have been pondering similar questions recently.

    Until the toxic economy has a make-over, and the toxic chemicals are banned from everyday products and materials, our lives will not, indeed they/we can not, be “normal” and free from doing a cost benefit analysis for pretty well every move we make from morning to night, and even while we sleep (what we sleep on and what we allow into our bedrooms).

    I take inspiration from the title of the book “The More Beautiful World Our Hearts Know Is Possible” (I’ll read the whole book when my brain has recovered enough to do so).

    What else has given me hope recently are a few breakthroughs in chemical research.

    A large group of cancer scientists discovered that mixtures of (toxic) chemicals thought not to be carcinogenic on their own, triggered cancer when in a cocktail with other EVERYDAY chemicals, that they said were currently impossible to avoid (and don’t we know it).

    I suspect we “canaries” are actually feeling these carcinogenic and mutagenic (etc) effects long before they become cancers.

    Some major media around the world picked up the research, others ignored it.

    With more and more people, especially “mommy” groups becoming aware of these things, and with so many children having health problems, I suspect the outrage is growing, and perhaps we will live to see the toxic products removed from stores and production and replaced with healthy products and materials… and lives…

  2. Thank you both for sharing – I am feeling “angry at the unfairness of the world” for you both and for me. I wish that MCS was something that we could rebel against and win the battle somehow, but fighting and resisting just makes it worse. All we can do is avoid our triggers and manage our health.
    And that sucks.

  3. The letters share the MCS challenge and “solution”.

    Managing my sensitivities has become second nature and it is just my life. I can’t imagine not processing in my mind what I may encounter in an environment when I make a decision to go or stay home. It would be liberating to be able to go places without wondering what the environments will be like and how many people will be there.

  4. Very good post. I agree with others that most of us are faced with these decisions daily. Taking on a life choice with a career change is admirable, yet poses all kinds of challenges. My warning to JM is you must realistically assess with each career choice – how will the educational environment kill you and in the end WHO will you be serving and will they poison you? As a former teacher, I know for a fact you can’t control the general student population nor keep them from using any number of products that will destroy your health. I’d stay away from any teaching career. The Alexander Technique training – again, who will be your customers and how much business will you lose if you try to restrict their behaviors? The environmental medicine doctor – that one sounds the most plausible in terms of eventually being able to control your environment so you can have optimum health, but you need to check out the schools you will be expect to attend. Naturopathic students love their essential oils and because they are convinced they are healthy, they will bath in them. Other educational facilities will need to be researched to see how safe they will be or if you can do any kind of conference classes or extension classes from home. Once you spend the money on tuition, HOW can they accommodate you so you can be successful in the program. Once you are qualified, then you can control your environment as an environmental specialist because all of your patients will totally understand your own health needs and will respect your personal experience with chemical sensitivity. That’s my vote IF you can figure out how to survive school.

    This is just the way it is. It’s a new life for us and our priorities revolve around making choices so we stay healthy. Most of us know if you fail at protecting yourself, your health gets worse and can leave you unable to function. Denial and making unrealistic choices can be not only life threatening, but very expensive. Dreams are wonderful to have, but they need to be revised and be realistic in order to compensate for our sensitivities. Understanding our limitations is just the way it is and accepting our new lives as they are is just part of life. I hate to be the bearer of bad news, but there is no cure. Don’t make plans around that kind of dream or you’ll be very disappointed. Dream within your restrictions. The mini-plot of land on a mountain far away from chemicals is my dream…

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