I am TILTed but my children are not. They certainly have the possibility to become so, thanks to their genetic makeup. We already see their immune systems troubles, especially in my daughter. But they do not currently have MCS. So, do I treat them like they have this illness, like they might develop this illness, or like one of the uninformed? Any attitude or philosophy, even if I canonized it in words, would be better revealed in the myriad decisions I make every day as a parent.
My daughter eats more like I do because she has inherited my GI problems but my husband and son still enjoy their delivered pizza once a week. My children are allowed to go some places I cannot, but our home remains sacrosanct. Everyone lives by my standards of body care and cleaning products. A lot of these decisions are passive, in that there are things we just don’t do, but some are more active. I have indeed made my daughter’s friend wash her hair when she first walked into my house, “There’s the bathroom, the shampoo, and the exhaust vent. Come out when you don’t smell.” Ditto to my son’s friend who was so proud of his “I am 12 now and can wear cologne” cologne. That one involved borrowing a set of my son’s clothes too. Fun memories for all of us but I had to act on those issues. The untested and undisclosed ingredients in scented products are dangerous and cannot be in my home. Because my home needs to remain a safe space so that I can occasionally go into un-safe spaces.
On the other hand, thanks to living with me, I think my kids are a step ahead of their peers in terms of total load – or a step behind, I should say. Their detox systems have less to deal with on a daily basis than most of their peers and certainly less that I did when I was their age. So in some circumstances they are allowed more exposure than I can handle. One of my worst triggers is rubber, the kind usually found on gym mats and weights; it was part of my original sensitizing. I am aware that the outgassing from those materials make me very ill and that they are also a challenge to anyone’s detoxification system. However, I have allowed my son to attend summer camp in our community center despite the presence of the smelly exercise room, the one that keeps me out of the building completely. Not every day and not in the smelly room, but still, he was there. Because we do not live in fear of what might happen.
The other end of that spectrum is the environments I do consider too dangerous for me, my kids, or any kids. We had that issue arise recently when the small gym where my daughter takes tumbling classes re-did their concrete floors with an epoxy and polyurethane combo. That air quality was awful afterwards; isocyanates are particularly nasty stuff. Then I had to take action. I expressed my concerns to the instructor and the staff and encouraged them to use cross ventilation as much as possible. I used myself a few times to gauge the air quality improvement or lack thereof (can we make that a verb, I canaried myself?). I also dragged my Austin Air Healthmate Jr over to the gym and installed it in the tumbling room (whose hardwood floors had not been touched) and asked them to keep those doors closed and the filter running all the time. My daughter skipped a few weeks of class while the worst of the outgassing occurred. I believe that for the most part people do not mean harm and given the chance want others to be healthy and safe. My beliefs were confirmed in this instance; everyone has been working to make the situation better. Because when we can advocate by informing and acting together rather than blaming and antagonizing, we get better results.
Written here, with time for reflection and retrospectively applied motivation, I might sound strategic or even wise. But the truth is, these few examples probably do not offset all the many times that we don’t do something because I can’t go there or because I am sick from something I did the day before or because I am afraid or I am tired or I am scared for my children. So when the actions may not speak as clearly as I’d like them to, then the words themselves need to be clear.
Over the years we’ve had many talks about MCS and why I developed it, but lately thanks to my daughter’s food intolerances and my son’s maturity, we’ve had conversations about what it MEANS. I’m trying to get these conversations right, but it is difficult because my spoken beliefs are much more pessimistic than my daily attitude would suggest. I do believe people with environmentally triggered chronic illnesses are canaries. I believe that we are the warning sign of what is coming down the road for everyone in a few generations if the road stays the same. I believe that we see the same effects in human health that we see in the environment’s health. The staggering amount of chemicals in our air, food, water, home and body products, that we have introduced in the last fifty years is bound to have repercussions. Global warming is real. So is environmental illness.
Despite the practical tone of these talks, I can see in my kids’ eyes, “Really? You think that? That’s terrifying – that’s the world you’re sending me into?” Now a lot of this is a normal part of growing up: learning that he world is not safe, that parents can’t actually protect you. But it is all less theoretical for my kids. The world damaged me in a specific, debilitating, permanent way. And while I think they see me as a capable adult who has fixed a lot of their problems, I cannot fix myself. That’s a lot to swallow even if you’ve kinda known it all along. “Yes” I think, “the world is a shitty place with huge, awful problems and we the adults don’t have any answers and it’s probably too late to solve most of them anyways. Good luck with that.”
I soften it to, “It’s a very complicated problem but with enough creative and determined problem solvers on the job, people will figure out how to do it all better. Hopefully in time to get us and the environment back on a better track. It will take scientists and political leaders and journalists and every individual making informed caring choices. We are some of those people already.” That’s what my TILT really means for my family. Since we have a preview of what’s coming, we also have a responsibility to make that knowledge inform everything we do. I think there is hope in that. On a good day, I even believe it myself.