Guest post by Kelly N.
It’s the most heartbreaking thing when you realize that you have no one…. zilch zero that will help you! All you are is a stranger in a strange land with no one hearing your plea. All the faces look around and stare at you like you have no face, no meaning.
You scream as loud as you can for your life…no one listens…no one cares. You’re surrounded by wolves on the attack. You know your final minutes are at hand. No one is available or coming to your rescue. Your pleads to God fall on deaf ears just like all the countless days of suffering have before. That little voice that echos in all us has realized that the hope it once held onto is long dead and gone. Such a dark, helpless and hopeless place. The sound of silence is the most frightening thing of all.
The most painful, knowing you suffered right underneath people’s noses and told plenty of them what you needed but they chose to turn their backs and give excuses instead of doing a thing to help. Very inhumane to not be valued enough to be helped. Too blah blah this or that to stop for 2 seconds and help your fellow human being. I’m not animal, I didn’t get myself in the position I’m trapped by a world that does not care to make room for persons who have intolerances for inhabitating it.
~ Kelly N.
So many human “canaries” relate to Kelly’s cries, so many cries go unheard.
People with MCS, ES, EHS, Lyme Disease, Fibromyalgia, ME/CFS, mold toxicity, and other disabling, invisible, environmentally linked illnesses are far too often ignored, neglected, abandoned, and maligned instead of helped. The suffering is immense, and so much harm could be prevented, if only people trusted each other instead of the Merchants of Doubt.
Please be kind. Extend a helping hand to someone who needs you. Because you can.
It’s sad how many people are too focused on something else: cell phone, laptop, music to notice if someone else is in need. It gets tougher when those of us with MCS are isolated so no one else even has a chance to see that we need help.
They don’t see us when we are down, they only see us the rare times when we can be a bit functional… and if we look or sound kind of ok, then we must not be making enough of an effort… In which case that tv show is more important…
I think there has been a large shift in humanity where many have adopted the “it’s not my problem” or “my problem is bigger than your problem” attitudes. Unless the problem effects them directly they truly don’t see it.
I think the “reality tv” and “me generation” “entertainment” and marketing had SO much to do with that… Creating divisions in society, encouraging selfishness and consumption instead of community building is great for the toxic economy, not so great for humanity…
It would be great if we go back to thinking for ourselves. How ever did we survive without advertising to tell us what makes us a great spouse, friend, person?
Something I have noticed, and don’t have a solution for, is that the times I personally need the most help, and have a lot of brain fog and inflammation, I am not able to put it into words in any way that anyone will respond positively to, (am I not positive enough then?) but the times I am in better shape and able to do more for myself, it’s easier to put into words what I need and need help with, and the solutions are easier too.
Another problem I have is that because I can do some things so well (sometimes), like write or find links, people think I am in way better shape than I really am in, even though there’s almost nothing else I CAN do…
Even with my writing and link finding skills, I haven’t been able to find the help I need.
There’s something so backwards about that.
And what about the people who have less ability to find words?
Or have more to lose by going public like I have?
This is my experience too… when I am really well I look good can think well at times… and then I can’t. One thing I have not seen a lot of other people with is a movement disorder. Once exposed to something heavy I can’t walk just jerk all over even when I try to sleep it affects my breathing as well… I have video of myself sleeping jerking and what looks to me like breathing problems woke me up. Of course it is all in my head… that is what is being affected by chemicals. pun intended.
I have been so very careful to eat the right foods wear a mask even in my own home cause I cannot control people I live with… another long story… and it was summer.. lots of open windows to blow crap out. Winter is here again and I am slipping already with many months of closed windows ahead of me. I am curious if others have movement problems it started with small jerks when I was still undiagnosed and snowballed into out of control nonsense… getting a mask was a game changer but many other things were put into actions complete change of diet ect. Still when i get too much bounce or gain or you name it many other things I lose my ability to think and control my body.
Independence is a top priority of mine walking is deemed necessary by me to maintain as much independence as possible. What drive me crazy is the foot dragging… of the powers that be… lack of information and lack of understanding oh and no validation… many things it seems I have a long list I will spare you.
I couldn’t lift my feet or do stairs when I was at my worst in a toxic environment. I needed a cane to walk on flat surfaces (grass was out). I’ve been wobbly, not able to lift myself up from a squat or fall, and lose co-ordination, etc…
I’m pretty sure I’ve heard other people discuss jerkiness and it definitely affects breathing. Lots of people need CPAP (?) machines.
This really resonates with me. You totally captured the experience. I went over to my neighbors (we share a wall) and said some chemical she was using was making me so sick I could hardly move. She was totally impassive. I could see she thought it was just my problem due to my physical defects or craziness.
The commercials are powerful… as are the beliefs that products have to be safe before they are sold…
They don’t know that it’s really the chemicals in products can make many people’s brain processes go crazy… or just stop functioning as intended…
Also the belief that “this is my property /body/life… and I can do whatever I want, you don’t have a right to tell me what to do/use, not do/not use…
Even when what they do/use is harmful to life and crosses their property line and onto ours and gets into our bodies…
I know how you feel Brenda. My friend of 60 years was visiting and I asked her to come in un fragranced clothes but she was adamant that she could not possibly not use conditioner in Don’t these people realize how it is with us canaries. Would she offer a child with a peanut allergy just a little nut or a little wheat to a coeliac sufferer or a fag to her asthmatic child. No just because you cannot it does not mean it is not there. Just like the wind no one questions Hay \Fever ? Lesley
I think product marketing can manipulate people into believing they are not complete without the brand name or some facsimile of it. And if there isn’t a tv show verifying the “reality” of something, then it can’t be real… More people spend their free time in front of a tv than they do out in the community with their neighbors and others. If we had sit-coms and dramas of people with severe chronic, disabling, invisible disabling conditions, then maybe we’d be taken more seriously?
This is so true. I felt this way, too. I realized that if i didn’t do something I was going to die. Nobody cared or realized how bad it was. I was able to get out of my sick house and since then I’ve gotten better and better. Can almost pass for normal now.
Getting out of sick houses can be such a challenge!
Energy, cost, lack of alternatives being a few…
I’m so glad you were able to get out and have most of your health back!
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I realize this article is five years old, but I felt reality hit harder than ever this past year, and then some, with so many folks vehemently “preaching” about what we must do to save everyone from an invisible virus that may or may not directly effect us.
But those same folks were never willing to do something very clearly within their immediate ability (stop using fragranced products and other chemicals) in order to make surroundings safer for their deeply suffering loved ones/clients/patients/etc.
Even after seeing and having been told in great detail how severely it diminished our overall well-being (and theirs, too, along with their children and pets) – and having been offered cost-free simple solutions.
I’ve been advocating for almost a decade now and only had 3 practitioners take me seriously and hang signage requesting their clients not wear fragranced products – but if they arrive doing so, they never turn them away or ask them to reschedule, so it’s still a crap shoot. However, I was grateful to have been taken seriously at all. Others act as if it’s trampling on the rights of those who choose fragranced products to be asked not to wear them. Sighs.