A Little Public Service Announcement

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.


25 thoughts on “A Little Public Service Announcement

  1. Melanie

    Oh Melody, I had read that you suffered from MCS but I had no idea it was as bad as it was. And to watch your children suffer must be agony. My heart is weeping for you and I hope so very much that you find a safe haven.

    I know what you mean about people's well intentions, and how hurtful they can be- I had a cesarean, and then a failed VBAC. People thought that if they said: "at least you have a healthy baby" it would make me feel better. Indeed not.

    I'm sure thinking of you and sending positive energy your way and prayers for a safe home.

  2. Pampered Mom

    Even in absent of MCS…losing one's house – the place they identify as home, the place that they put so much time, energy, and love into is a very difficult thing. It's so much more than a house or a thing, it's home.

    It's like what Melanie said with "at least you have a healthy baby" or the person I saw who didn't understand the farmer's devastation over the loss of all of their tomato plants due to late blight. Sometimes it's more than just a thing.

  3. Kim

    Considering all you have been through, is there no possible way for you to keep your healthy house? Won't any other home make you ill again? You can't do that, there must be a way.

  4. Michelle

    Oh how awful. I can't even imagine. Perhaps all of the things you have done to restore your immune systems thus far will give your bodies a fighting chance. Bodies are remarkable at healing themselves. Still, I can appreciate your apprehension. Thanks for explaining this to us all.

  5. 2WeeMonsters

    Kimberly, MCS is Multiple Chemical Sensitivity http://www.multiplechemicalsensitivity.org

    Melody, my heart breaks for you all. As PamperedMom said, it's always devastating to lose your home. I cannot imagine the fear and anxiety that your health situation creates in looking for another home; in leaving a safe place behind. Your family has been and continues to be in my prayers & thoughts.

  6. Melody

    Kimberley- I will try my best. Multiple Chemical Sensitivity-MCS is called by many different names and you might know it by another. There are also a number of other diagnosis's that are kind of used interchangeably; Sick Building Syndrome, Environmental Illness, in veterans it's often called Gulf War Syndrome, etc. Usually either due to a sudden large exposure to a chemical or other toxin (mold for example)OR from chronic lower level exposure, a persons body starts responding to everyday kinds of things. Chemicals that most people tolerate without even thinking about it can cause serious reactions in people with MCS. Things like dryer sheets, scented shampoo, plastics, ink on a newspaper, carpets… Many people develop a lot of allergies as well.

    this is a good site with more info: http://www.multiplechemicalsensitivity.org/

  7. sarah haliwell

    I have been so sad to read that you are losing your home and I do appreciate all that this means to you. It's absolutely devestating and of course you are frightened. I wish so much there was a magical solution that meant after all the hard work you have done you can keep your sanctuary. I can only hope that all that positive energy you put in will reflect back to you with a positive outcome one way or another.

    Thank goodness you and your children are getting your health back. I hope you continue to improve. I can only imagine how awful and terrifying it must have been.

    Sometimes it seems like good people just can't get a break. I sure hope one comes for you.

  8. Russ & Kelly

    No need explaining MCS to me or my family unfortunately as we were in a similiar situation as your family back in 1996. I had never heard of MCS before that (and I am a nurse).

    We had been living in a home that had a fuel oil leak under the home in the crawlspace. So it was kinda like we were living in a diesel tank for a home. We had most of your symptoms you mentioned and then some. Husband was in Duke University for nine days because he couldn't think or stand straight (he was in his 30s). Never did get a diagnosis because apparently the doctors there didn't know much about hydrocarbon poisoning (but that's another story).

    Anyway, to make a long story short, we are better after moving out of our home. Had a hard time finding a safe home as we found we had to immediately walk out of some homes that were off-gassing (new modulars). Finally found an older home and gradually got better (it took many years).

    Apparently this disease is "controversial" to some doctors. But I have found more are learning about it and finally believing patients. I used up all my energy years ago trying to get people to learn from what happened to my family. Some have open minds and some still don't understand. But with people learning about living green more in the last few years I feel like we are making progress FINALLY.

    I'm really sorry about your situation and pray you find a safe house. The bank will never be able to sell your toxic home anyway so I wish you could make a deal on the house you are living in. You have my empathy for sure. You have such a beautiful family, a beautiful way of articulating your thoughts both with words and pictures. Thanks for educating your followers on MCS…it might help them with members of their own family or co-workers to know what MCS is.

  9. Kimberley Lynch

    Oh my goodness. Thank you for your explanation. I did check out that website. How terrible for you and your family. What caused it in your situation?

    Glad you are on the road to recovery…and wish you luck, health & happiness in a new home soon.

  10. Jenn

    Thank you for the extra explanation Melody. I knew it was a health thing, but not much beyond.
    Reading what you wrote is hitting home hard here since my husband and I are having more and more respiratory issues and so is a close friend and supposedly we are in 'clean' houses.
    Know you are in my thoughts.

  11. Kathryn

    We are in a similar situation so I really felt this post. We also have had our finances ruined trying to "deal" with everything a sick house includes. Add to that a job that has continued to pay less and less…things are very scary for us right now. I'm sure there are no words I can share to tell you how sad I am for you. I feel your pain even if my own isn't quite as harsh as yours healthwise!

  12. Suzanne

    My dearest friend and her three children suffer from this, amongst other things so I do understand. I will be praying a miracle will happen where you can stay in your current home where you are all well. Keep sharing your heart!

  13. Melody

    Melanie- this is kind of my "happy place" if you will. Which is why I've shied away from talking about being sick in anything more then a vague kind of way in the past. It's most certainly not happy.

    Pampered Mom- so true.

    Kim- Every day my husband and I try to think of ways to make it work. We don't have the money to finish and we won't ever really. So long as we stay here we have to continue to pay the mortgage on our old house, which means that we can't get a construction loan, even once we can get credit again (we can't currently because of having just declared bankruptcy). Meanwhile we are still spending money trying to maintain that house to some degree so that we can still have access to the running water down there (buying oil to heat it every winter so that the pipes won't freeze, etc). And we are bringing mold spores up here constantly with going back and forth. This year when it was so damp, we started having mold problems up here too. It's not bad yet and if this house could exist on it's own we could solve the problem easily, but as long as we are here we are dependent on the old house and as long as we are dependent on the old house, we are going to have trouble.

  14. Melody

    Kelly and Kathryn- I'm very sorry to hear about your similar situations. You and your families will be in my thoughts and prayers.

    Jenn- It couldn't hurt to have an air quality expert come out and run some tests. I wish I had done that sooner, before we got really, really sick and our options became so limited. If we had gotten out early on, we would have had more options.

    Kimberley- I feel like there were several contributing factors. Iain and I (and Elijah in utero through me) both had pesticide poisoning when our neighbors decided to have the trees outside our open windows sprayed. We had symptoms after that that didn't exist prior. We decided to move to the country to get away from that kind of thing. Only problem was that we unknowingly moved into an extremely moldy house (the air quality guy who tested it told me that of over 500 houses that he had tested he had seen 12 with levels higher then ours, and all of them had been condemned) that just demolished us.

  15. Melody

    Thank you everyone for your kind words.

  16. taimarie

    Melody- I read your post yesterday but wasn't able to respond and was thinking about you lots today. I propose that we have a mass visualization- all your readers imagine a beautiful, healthy, safe home without financial stresses for you and your family, and imagine you and your family all rosy cheeked and healthy. I know visualization maybe can't solve everything, but it can't hurt right? And at the least you will feel our warm thoughts coming your way.
    Please know you are in my thoughts and prayers.

  17. Lizz

    I can offer you kindness and understanding of tough situatons. I can offer you support. And I'd like to ask if there is anything I can do for you and your family?

    The love has come our way during the health crisis my partner has been experiencing and I would like to extend that same thing to you.

    Your are not alone and you are being prayed for by many.



  18. Pia

    Melody, the only thing that is going through my mind is how can we help??? It is so hard reading your blog and being so far away and not being able to do anything!!!

    You are a true inspiration to us. reading what you wrote I am so grateful for what we have (and I wasn't before). It gave a completly new perspective, seeing pictures, what you do with children …

    Thank you for the big gift you gave us. Tine is sooooo excited while making things for exchange and your life story touched us so much, that it is changing our lives.

    I am sending you blessing and in a day or so package from Tine will follow :)

  19. taimarie

    Yes, please tell us- is there anything we can do? Anything specific you need right now that we might be able to help with? I've got this package here I have not yet got to the mail…

  20. Melody

    Honestly, I can't think of any way that people could help (apart from prayers of course, which are always welcome), though I do appreciate the offers. What we need is either for our current house to be quickly and easily finished or to have another safe house available for us. Everything else we can take care of no problem.

  21. Heather

    Our family has dealt with MCS for several years due to mold and chemical exposures. We also had to leave our home, and we continue to pay the mortgage even though it is unlivable. We have been fortunate to move to the western U.S. (the dry climate has helped tremendously), but it has been so hard on us. I just wanted to tell you how much comfort and encouragement I have found reading your blog. Seeing a mom who still finds the beauty and positivity in life, and seeing the joy in your posts and pictures has helped me through many dark times. It has truly been a beacon to me. I cried when I read your post about having to leave your home. We had to move 4 times before getting to a (rental) home that we can tolerate, but it did finally happen for us. I have 3 sons, and we are Waldorf-inspired home schoolers too. I can relate to so much of what you've said about your experiences with MCS as well as life in general. I can't thank you enough for writing about this!
    Please accept my gratitude and wishes for a peaceful transition to a new healthy home environment for your family. I hope that the blessings you put forth will be returned to you many times over.

  22. Melody

    Heather- your comment made me so glad that I decided to post this. I hope that your family continues on in good health, moving beyond surviving (the highest of aspirations at these times, I know) to thriving. I'm really, really glad that you took the time to comment here. And I'm glad to know that you are out there and I hope you won't be a stranger around here in the future. Steve and I were both touched by your story and are wishing you all the best.

  23. Anonymous

    Hey Melody. I have been reading your blog for a little while now, but I don't think I have ever commented on it. I have been thinking of you and praying for you since I have read this post.
    I can only imagine how awful it must feel to be dealing with all you guys have to deal with right now.
    This morning I was actually looking into nominating your family for the Extreme Makeover: Home Edition. I realized, since I don't know you in RL and have no idea where you live, I couldn't do it myself, but you could actually nominate yourself. I know it's a long shot, but who knows…it might be answer to all of your problems.
    I just want to wish you good luck and I will keep praying for you and your family.

  24. Grace

    Oh, Melody. I've known you long enough to know that it's NOT "just a house", and when I read the other post (just tonight! so sorry!), I was shocked to learn that you were considering leaving it. But in reading your comments, I see that you are stuck between a rock and a hard place and I am so very, very sorry.

    Maybe you could move out west where it's dry. (Wink, wink.) We don't have the mold problems here to the extent that you all do in more humid areas. Sigh.


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