Sunday, April 15, 2012

When we are having fun

     So the past week has been, well for lack of a better word, interesting.  I don't know about you but I try to maintain as much normalcy as possible.  Those of us with multiple chemical sensitivities (MCS) already know that when we get somewhere we will more than likely have to leave.  Truly, all those wonderful people out there really think it is necessary to wear aftershave, perfume, hairspray, deodorant, oh, and the worst, lotions.  Plus the fact that whether we go to a meeting, event or friends there has been some sort of cleaning up with caustic chemicals.  Especially the bathrooms.  Really people, we would like to go to the bathroom too.  I guess I have to consider myself lucky that I am not a really severe germaphobe on top of everything else.
     So this past week I decided to go and attend all my meetings and functions.  Monday I went to an art meeting and hadn't even gotten five feet in the door. It was at one of our town hall rooms and right by the door they had 'antibacterial' crap. Now, I understand how people don't like bacteria, but that stuff is so caustic to my lungs that when my friend who walked in the door in front of me squirted some on her hand, I wanted to scream, "NO, damn it all to hell!"  "What the 'beep' are you doing?"  Instead I thought OK, you know she did that, so try and sit on the other side of the room.  See, I do still have somewhat of a brain.  Well as you all may be able to guess, especially those who suffer as I do, all those chemical molecules spread around the room and invade the air.  How long did I last you ask?  Well perhaps you really don't care, but this is cathartic for me too.  Five minutes. Yup five minutes, after a twenty minute drive to get there, oh and a twenty minute ride home.  But as the logical side of my brain was trying to get thru, "Jean, you knew this was going to happen" "you know that you are going to cough up your lungs for 6 or 8 hours now"  the social side of my brain was firmly stuck to the thought that I was going to persevere and try and live a normal life.  Who wants to be stuck at home, in a bubble, with no one to talk to or visit you?  Well not me.
     After a brief respite of coughing up my lungs, trying to get rid of my headache, and since I don't allow myself to stay anywhere that is bothering me to long, I found that the dreaded blackouts aren't occurring.  Which for everyone concerned is a good thing.  I went on my solitary computer, in my solitary house; Yes, I was having a solitary pity party for myself, by myself and with myself, yet again.  This was a really short lived party tho, cause it takes to much energy to throw a really good pity party.  Anyway, I digress, back to the computer.  I found an email, from my cousin, one of the millions that read this blog....No don't laugh, she has millions of cells in her brain that she needs to utilize to read and process this blog thingy, plus you don't feel so bad when you think of it that way.  Who wants to admit that only 2 or 3 people read you rants and raves.  It is kind of like going to a restaurant and saying their are three of you, "Yes, their are three of us today; me, myself and I"
     My wonderful cousin, Marie, did some research for me. She is retired now and I so appreciate her efforts. Mainly because the research I had done so far kept telling me that it was all in my head and I was psychotic.  So when you suffer from MCS not only do your friends and family think your crazy, your doctor thinks your crazy and soon, you too, think you might be crazy. Remember tho, with MCS it is your respiratory and immune system that is crazy, not your brain.    So one of these research papers she found actually gave me a lot of insight into our world. Such as this one quote, "Our cultural response to MCS has been almost entirely negative. People with this primarily invisible disability have been ignored, de-legitimized, dropped as friends, discriminated against in the workplace, fired from their jobs, and excluded from housing and medical care."  So if you are reading this and you are feeling crazy...you're not.  MCS currently is not a true recognized disability.  We must educate, so we too can be people.  If you are reading this, I want to reassure you that, YOU ARE NOT ALONE.  If you have trouble hearing when you read, say it out loud, YOU ARE NOT ALONE or I AM NOT ALONE.  As soon as I figure out how, I will add a link to this paper. http://www.ilru.org/html/publications/bookshelf/MCS.html I think I actually did it!
     Back to Monday.  Monday night is chorus rehearsal.  It is in our rules that we aren't supposed to wear perfumes and such stuff.  Mind you, people always wear stuff, you just have to hope it is from the morning and has just about worn off.  During the course of the last three months and with the understanding of the director, I have begged and pleaded for everyone to come in scent free.  I  have probably left after a few minutes more often than stayed, but I keep going. I absolutely love music and I know that I am not alone.  I may have the most severe case in the chorus, but, I am not alone.  So Monday night I go to chorus and since I am still all congested from the other meeting I sit in the back of the room.  Guess what?  I MADE IT!!
      Tuesday? Five minutes - had to leave, Wednesday? did OK at lunch, except why does the wait staff wear stuff?  It seems it would take away from a persons sense of taste. But after lunch I was going to the grocery store. Walked up to the door and yes, the dreaded lilies are still there so I turned around and went home.   Thursday? I went to the painting group I'm in, started painting and laughing and dare I say, "Acted like a normal person" until someone walked in with an overload of aftershave. Brain once again yelling at me "See I told you so" "Why don't you ever listen to me?"  Well brain, I don't listen to you because I am not going to give in. So there.  As I was packing up my brushes and paints I could feel a really big solitary pity party coming on, now I do know that there are many people worse off than me, it is just at the time the emotions flood over me and I really would like to get hysterical and yell, "Why me?" Plus I had pissed so many people off by asking them to not wear stuff I just didn't have it in my heart to do it yet again.  So I walked up to my friend, bless her heart and said, "Bye"  We talked about the upcoming painting classes and my concerns over paying for a class that I have to leave.  She said she would mention the smell issue for me.  I wonder if she really understands how appreciative I am for that.  It is so hard to have to mention it again, and again.  Perhaps that is where the 'crazy' part comes in.  Another quote: "When persons are unable to work, further their education, or enter public buildings, serious quality of life issues are raised. For the MCS population, merely performing errands or participating in environments that others take for granted endangers health. Lack of access to public spaces means that these places are not really public. Although paid for with public funds, they exist for those tolerant enough of toxics and mobile enough in body to make use of them. At this point in time, people with MCS are essentially an invisible population due to the lack of a paradigm for chemically induced illness."  Invisible? I am not sure invisible is the word I would use.  Ignored is perhaps a better word.  After all....we are just crazy.
     So I will end on a positive note.  Thursday afternoon my friend called.  "Jean,  you won't believe it. When I mentioned your sensitivities and your request for a smell free zone, eight people stood up and applauded."  So you see, when we are feeling our worse and dwelling on the negative, the good Lord will give us a ray of hope and sunshine.
     Please, if you know someone who suffers from chemical sensitivities or any severe airborne allergies try to be understanding of their needs. While you may feel put out and irritated by the request to not wear perfumes, aftershave or any of the above, while your brain is going, "crap, I like it and I have used it for 30 years" "I think they are crazy" and "who do they think they are?"  Remember, that it could happen to you too and is it really that big of deal for you to not wear it?  It is darn near impossible to understand the visceral reaction those of us with MCS have to this stuff and while we try to conform to your world, it is time for us to stand up and be recognized. Recognized for the wonderfully different people we are.  People that would just like to go places, hang out with our friends, hold a job and even go to the grocery store. We want to be productive members of society and we deserve it. 
    

4 comments:

  1. I especially love it when guys, who need a shower, use cologne, instead. ;-P Gawd hep us!

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  2. you know, it is always helpful to know if there is somewhere there is supposed to be a smell free zone. I do think more attention needs to be brought to Multiple Chemical Sensitivity because many of us know very little about it. We all need to know more about it. I know I would much rather talk with a friend (or cousin :)) than wear my scented lotion or a deodorant that I know would cause a problem.

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  3. All you can do is request people to be scent-free, hope for the best and be ready to leave. Requesting accommodation is educational for others. Eventually if more people become more vocal, more will understand. It's that squeaky wheel theory. But don't expect people to comply. If there is more than one person in a room, at least one will stink and there isn't anything you can do about it. Anytime I've requested accommodation there are always a group of people who say, "Hooray! The stink bothers me, too." If no one says anything we all fall silent and nothing gets changed. Be vocal, but don't let it make you crazy with anger when no one complies. And don't beat yourself up knowing you shouldn't attend any meetings. Eventually and slowly you'll come to terms with what you can and can't do.

    Am I babbling? I think I talk too much! That's why I started a blog so I could babble non-stop and not feel guilty about it!

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  4. I will never understand the need to sterilize with antibacterial sprays, lotions, and soaps! And I agree, I think those chemicals are more deadly than bacteria! I read somewhere kid's immune systems are being compromised because they are too sanitary with all the chemical washings. It's so unnatural! Anytime I see anyone wiping something on their hands I am out the door! Once I watched a friend start to do it in front of me and I started screaming, "SMELLY LOTION!" She frantically tried to calm me, "NO it's olive oil!" I'm sure she thought I was a bit insane....chemicals do make me insane! hahaha

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