Maybe I shouldn’t. Maybe it will seem silly. Maybe people will feel defensive or hurt. Maybe these are things better left unsaid. These are the thought I was having as I sat down to type this. And were it just for my own sake, I wouldn’t be typing at all. I know that it’s just that people don’t understand. Or, and this part is harder, don’t believe. I accept that and take the well-meaning intentions behind people’s statements, full well knowing that they are truly doing their best to be a comfort. I also accept being considered a narcissistic twit at times by people who don’t recognize my very real and very valid concerns. But as I thought about things, I couldn’t help thinking, how will people ever understand if no one explains? So, full well knowing that is might be my own children, someday putting themselves out into the world and looking for support, I’m going to try to explain.
Telling a person with MCS that the loss of a safe home is “sad, but it’s only a house”, “easily replaceable”, “all you need is love”, and whatnot, is the equivalent of telling an insulin dependent diabetic that the loss of his source of insulin is sad, but not a big deal and everything will be just fine in time.
I’m sure you all know that I’m as sentimental as the next person, especially about my family and my home. And this situation does greatly pain me. We have shared many hopes and dreams here that we now need to abruptly set aside. And I want to speak to that experience and I want others to speak of it as well. I suspect that in the coming weeks I’ll be talking about that aspect a lot. But right now, I feel it’s important to clarify the potential health ramifications of this decision.
When we moved into this house, I was on oxygen regularly. It wasn’t odd for me to collapse of pass out after an exposure. Speaking was often difficult and would frequently send me into severe coughing fits that made it difficult for me to get enough air. There were times when I was too weak to hold a glass to my lips. I cut off all of my hair because it took too much strength to lift my arms above my head to brush it. I was bed ridden sometimes for weeks on end. I lived in a constant state of brain fog. There were times while I couldn’t remember basic words like ‘water’ or how to spell my own child’s name. Really it was more a matter of not being able to get my brain to communicate with my lips or my hand. There were times when simple tasks like doing up a zipper, seemed like insurmountable obstacles. I suffered from regular migraines and was exhausted and in pain at all times.
My children all developed food allergies to every single food that they have ever been tested for (or all but a few), which is a sure fire sign of immune systems on overload. Two children developed serious yeast infections which left the folds of their skin raw and oozing pus and blood. One child spent hours every night rocking back and forth banging his head on the wall. The same child started randomly vomiting for no know reason and baffled the doctors with his symptoms. One child could never get warm and was always fatigued. One child developed learning disabilities that there was no sign of before and became so violent and unpredictable that he was diagnosed as being bi-polar. The baby started spitting up blood through his nose. All of them developed ‘allergic shiners’. This was life for us before this house.
A healthy home is the number one most effective treatment for an Environmentally Ill person and without that, any degree of recovery or regaining of health is very limited, if it’s even a possibility at all. The health that we have managed to reclaim is entirely due to this house. Without it I’m not even sure that we would be alive right now. I know that sounds drastic but when we moved in here we were in a state of fear for our children’s lives. Surely the sacrifices that we have made show just how serious the situation was and without care, could be again.
We know that we can safely live here. We don’t know if that is true for any other house. The only way to know is by trying. But the kicker is this…once we leave, we can’t ever come back. We’ll be voluntarily foreclosing on these two houses. And once the bank takes them, they are gone. There is no turning back.
So when people say to me what a relief it must be to have made this decision, how comforting it must be to know that our ‘hard life” is nearly at an end, I feel my body tense a bit because I am absolutely terrified and there is no comfort in it at all. I know that we have to do this right now and I hope that it will mean a brighter future for us all, but the risk that we’ve been cornered into taking is not a small one. And this turn of events is not minor in any way; what we are loosing right now is not ‘just a house’.
I want to say this now, not because I want people to feel badly about belittling our situation. I know that everyone means well and wants to be a comfort. I hope people will always feel comfortable talking to me in this space and in life. I don’t want anyone to feel like they have to choose their words carefully or risk offending me, because you won’t offend me if your intentions are good. As I said before I welcome the sentiment of your words, even if you don’t really understand where I’m coming from. The reason I’m taking the time to share this now is the only way that life will become easier for people like me and families and children like my own, is if there is more awareness in the world.
In the spirit of raising awareness, if anyone has any questions about healthy homes or living with MCS, please feel free to post them in the comments at any time. I will try my best to answer them. At the moment I’m not very quick with replies, but I do try to get to them all eventually.
