There are literally hundreds of symptoms associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It’s not something that is made up, unexplained, minor, can be managed or cured with exercise, therapy, diet, supplements, yoga, etc. Anything that discounts or attempts to discredit this truth is gaslighting.
I’m sharing my event post from #MEAction in which I updated my suggestion from my Invisibly Ill post. I did forget ONE thing however.
*Be sure to check with local laws and ordinances to make sure that there aren’t any restrictions against protesting with covered faces IF you do choose to use a method in which your face wouldn’t be shown.
#MillionsMissing is a global campaign for ME Visibility and Advocacy. Help us create a vision on May 12th, 2018 by joining our InVISIBLE ME – Wherever You Are!
Those of us with Myalgic Encephalomyelitis (ME) can feel completely INVISIBLE, left for DEAD and as though we do NOt MATTER. We NEED help being seen, showing we do matter and making an impact.
May 12th is a day to give VISIBILITY to the many millions of people who are Invisible, who are akin to the Living Dead and to honor those who have lost their lives.
Please join us on May 12th in creating haunting visuals with the above capitalized terms in mind. The idea is to dress-up, face paint, adorn ourselves or in other ways bring attention to ourselves so that we can convey the specific concepts and/or feelings to the general public and also share the important message of where they can go to find additional information about what this specific visibility campaign is all about so that they can further hear our pleas and help.
Some specific ideas include:
• Dress up similar to The Invisible Man
Invisible persons could wrap themselves with bandages, cheesecloth or wear morphsuits to give the impression of their “invisible” skin materializing. Then accessorize with gloves, hat, dark sunglasses, clothing, etc.
• Paint faces similar to Sugar Skulls (Calavera de Azúcar) for Day of the Dead (Día de Muertos)
• Dress up to outwardly show, emphasize, and accentuate the way we (people with ME) feel on the inside. This could be done both literally and figuratively.
Examples may include:
– Draw poison ivy vines as tendrils wrapping all around one’s arms, legs, neck and face to symbolize the feeling of being poisoned from within.
– Use fake blood to symbolize serious and ongoing trauma.
– The use of make-up to apply bruises, scars, and other physical wounds can show the way it feels physically as well as mentally.
– Make-up and costume can be applied for a zombie appearance.
Be sure to pay attention to SIGNAGE and sharing your MESSAGE! This does not mean that you need to carry a sign in your arms or necessarily tape/pin a sign to your front/back.
You can write your message across your forehead, down your arms and/or legs. However, it is important that you include a clearly identifiable message.
“Can you see ME now?”
#CanYouSeeMeNow
#MillionsMissing
#MEAwareness
Visibility and Impact are key! PLEASE ask your friends and family members to join the protest!
Regardless of where they are, what they are doing, they can share the message, our message, that we NEED VISIBILITY for our voices to be heard. They can increase the amount of exposure for this campaign.
It does not matter where you are, what you are doing, if you are in a group or all by yourself, only that you find a way to be seen.
For those who are unable to venture out in public, we can still join in from our homes. We can share Inviselfies, Invisideos, post on Social Media, create a media storm to spread awareness.
Afterwards we will post pictures of this Visibility Action campaign on social media along with others from around the world to inundate social media to help make us VISIBLE!
We are the #MillionsMissing, and we will take a stand together and be seen!
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Alright, technically, I forgot MANY things, got several things reversed, mixed up the date the first time I posted and all sorts of things which are relatively common when dealing with a neurological illness, as opposed to what some people seem to believe about this awful illness being psychosomatic.
I have an impactful & memorable idea for use in conjunction with #MillionsMissing.
I think it can and should be done in addition to the already planned #MillionsMissing shoe campaign.
I have an alternative idea,
To be used in addition to the shoe campaign,
For anyone who may be interested.
I understand that this is very short notice
I’ve been dragging my feet a little mentioning anything
Because I was afraid of affecting anybody negatively.
But, while it can be very scary to speak up,
especially with the thought that it can hurt or be interpreted incorrectly,
Silence can hurt as much or more
as the emptiness precludes the voices, muscles
and strength we desperately need to deliver us from invisibility.
HOW TO MAKE AN IMPACT
Some of the factors which contribute towards making an impact are,
A strong visual,
Relatability,
Emotional factor,
Inspiration and memorability.
I thought that anyone who wanted could dress themselves as|
The Invisible Man/Woman,
And carry a sign with the message,
“Can you see ME now?”
and hashtags,
#MEAwareness, #MillionsMissing
This is a relatively easy visual to create
by wrapping oneself with either sports (ACE) bandages or cheesecloth, gloves, sunglasses and a hat
REASONING
Reasons I believe this will stand out and make an impression include:
It is easy to pull together quickly,
People could raise awareness with this visual literally anywhere.
They could ask their friends to dress Invisibly for them,
It can be fun and exciting for people to dress up and play a part,
especially around and with children.
It can be done singly or in groups,
Regardless of how few or how many people there are,
It will still generate attention.
Pretty much anybody can do it anywhere
Many people are familiar with the visual of The Invisible Man.
Many people are familiar with Invisible Illness,
Also many people identify with Invisible Illness.
I’d even like for the visual to be able to help promote Invisible Illness overall, eventually,
But to begin with, I believe that we can claim this,
Just as the majority of the writings and descriptions of living with pain and chronic illness were initially written about and by people living with ME
So many more people have been able to identify with these poignant messages.
The reason I believe that it is important to do this alternative idea,
In addition to the shoe campaign is because
I have concerns that of those who will see Millions Missing campaigns
All across the globe with shoes lined up,
Many will NOT look closer or close enough
Most importantly, they cannot erase images already in their minds
Our campaigns will be competing with visuals and memories of
500 – 600 pairs of shoes of annual Suicide Victims
1400 pairs of shoes representing victims on Australian roadways annually
3,000 pairs of shoes from citizens protesting for their human rights in Mongolia
7,000 pairs of shoes representing children affected by gun violence in America
11,000 pair of shoes of protestors for climate change
Granted, there are only 60 pairs of shoes on the Danube,
The original source of inspiration for the shoe campaigns.
I understand it’s not necessarily about the numbers.
But it is about impact.
Looking the other way has become an epidemic. People don’t always necessarily intend to not care or have cruel intentions when they tune out others in need. More often than not the case is that people just don’t know what to do, how to help and they turn off the sound, change the channel rather than pay attention and do anything at all to figure out a resolution. Many people would rather be able to solve a problem than do nothing at all. When faced with a challenge and no ideas for how to figure out what to do come to mind, most people back down and disengage instead of facing the challenge if it’s not specifically theirs to handle.
The old adage, “Out of sight, out of mind” rings true in this case. Once someone has passed over anyone with a problem that is not their own to solve, they typically will dismiss it from their mind with very little reason for it to resurface again. It’s truly not their problem and the one suffering is on their own, like a being in need of rescue floating further and further out to sea without a paddle and perhaps even without a life raft. The truth is that most people don’t need someone to solve their problems. They need someone to listen, to show support, to care, to be genuine and to do their best to understand or admit that they don’t understand but can see that whatever the issue is that it affects the person tremendously.
There have been so many trends in cruelty towards fellow human beings which I have been seeing throughout society and which have seemed so much more prevalent over the past few years. I’m not sure if it’s a matter of my own personal circumstances and where I am in my own journey of self, whether I’ve stumbled into a bizarre other world, whether people have decayed and allowed themselves to be angrier, harsher, more judgmental, crueler, and as a result uglier or if there’s some other explanation for all of the indecent behavior I see all around me more regularly than there should ever be an excuse for. And what’s even sadder is that people seem to have no shame or qualms about it either and quite the opposite take pleasure in their lack of humanity. I am completely befuddled. It takes no imagination, no strength, no courage, no determination, no willpower or any redeeming trait at all to be a cesspool of a human being. You don’t stand out nor do you shrink into the background. You are complete mediocrity.
So many people are afraid to think for themselves and are afraid to be themselves. So many people get offended because they don’t even understand what has been said and their first response is to assume the worst, be offended, hurt and then angry if something included one of their hot buttons and didn’t include a fuzzy warm package or reassurance. If you aren’t going to be yourself, you may as well be a zombie.
In public we preach tolerance, acceptance, equality and understanding. Yet a large number of our laws are created out of a response to anger and fear while many more are a direct result of greed in power. People are more likely to jump to one another’s aid in a zombie apocalypse than in supporting somebody who has been mulled over by a (self)righteous movement lest they be persecuted themselves. I guess that stands to reason that people have emptied their minds and personalities to be zombified lemmings. I can only hope that there is some way in which people are able to recover their brains and hence their hearts and their compassion so perhaps the salvation of the planet will be possible. You won’t see me holding my breath, but you also won’t see me acting like an uncompassionate wretch ever.
Maybe, just maybe, we will see a return of the 70’s era of “Make Love Not War” as marijuana receives more widespread acceptance. And I feel that we should do something else like Hands Across America and have it end with a hug to each person with whom ones hands are being held to help combat depression, homelessness, and all things which might be summed up as the difficulties we face in life. (And yes, sometimes I start rambling like an old shack in the middle of the Appalachian Mountains! Love it or leave it, but it does exist.)
Capture a smile, a good deed, an act of selflessness or anything which you feel is the epitome of good on camera. This organization/project doesn’t take place until May however, what’s to stop you from finding examples of good and immortalizing them on film all year round? This is yet another example of things I think people should be doing to perpetuate positivity and inspire the betterment of society.
Is inspiration and reasons to smile. With the holiday season here and barreling down our throats, I was reminded even more so of my resolve that I wish that we all made more of an effort to spread positive influences and joy all around us. I enjoy that people post reasons they are thankful leading up to Thanksgiving, however I wish that the trend would continue year round. I have often expressed dissatisfaction with periodicals and television news in that the focus is more on shock and awe than it is on feel good stories. I would like to encourage the sharing of all things inspirational and good in an effort to perpetuate influential growth.
So, with that in mind, here is a site which continually produces projects which promote excitement and joy for all those who are involved. This includes those who are key players, those who are first hand observers, as well as anybody else who comes in contact with the media such as you and I from seeing, reading and hearing about it here on the internet. I encourage you to spread the joy and share with me any other examples of stories or projects which highlight the decency in the human race or which can help others to feel good.
How many people work “under the table”? Some are trying to avoid taxes, but some are trying to avoid losing their only source of income, Social Security Disability or another form of disability income. If they are found out to be earning for themselves, they will lose any other assistance. Social Security believes we can survive on $12,000 a year. If a person on disability earns more than $1,000 more than three months, then that person is assumed to be able to support oneself. If we try to supplement that income we are seen as completely able bodied and told that we don’t need ANY assistance and to go do it ourselves. Yet if we sit back and don’t do anything and become so unfortunate, we qualify for MORE assistance. Is that what the government wants? For us to be so dependent on assistance, and not to try to help ourselves? Who are they to decide how much we need to survive? They don’t even look at what our expenses are such as medical, savings for retirement, travel, and consideration for expenses associated with income, such as business related expenditures. The weak get rewarded and those who try get punished. I don’t agree with this system and I have never been somebody who sits back and lets things go when they are simply wrong.
If a person is unable to earn a living due to a disability, and that person is unable to afford basic living expenses including food, shelter, clothing, heating, cooling, electricity, water, medical, transportation, phone (internet is considered a luxury, however I would argue it is a necessary tool in today’s society for communication and research for a disabled person who is immobile/non-ambulatory and unable to reach local facilities such as a library), and that person is unable to save for retirement, then what alternatives are available for survival? Crime, begging or stealing appear to be the only viable options if the person doesn’t qualify for any assistance elsewhere. It makes sense to me that a person should be allowed to help himself and not be penalized by the government for doing so. A tax-break for those who are already proven to be unable to work, but who are still straining themselves in a difficult situation rather than sitting back and looking for a government handout.
The guidelines for disability are not lenient and they are reviewed. Despite what some people might say, it’s not easy to fake a disability and it is very difficult to win an award of disability even for those who are very obviously disabled. It is easy to criticize for people who are not disabled, and they like to imagine that just because a person is able to do something some of the time that they must be perfectly capable of doing the same things able-bodied people do all of the time with no repercussions physically, mentally or emotionally. Nobody wants to be disabled.
It’s hard enough having a disability in the first place. Then, facing ridicule and skepticism from ones peers and even loved ones on a regular basis is overwhelming. Nobody understands exactly what it is like to be just like you. And when it comes to a disability, insurance companies will spend an exorbitant amount of money trying to prove that a disabled person is lying so that they won’t have to pay insurance premiums. Why would anybody want to leave their job to take a pay cut ,then have to try to figure out how to survive on a diminished income and pay for the same expenses they had when they were bringing in more money? It’s not logical.
I’d like to create a non-profit organization which allows disabled persons to work for themselves and provide their own benefits and reimbursable expenses such as medical, business supplies and travel expenses. And be able to use their earnings to pay for necessary expenses and put aside a portion into a retirement savings tax-free. Otherwise, so many people might not even have a future. And we deserve the right to not only dream of a future but to be able to work to provide for it.
Inspiration Domination – Turning dreams into reality through networking and cross-promoting people, products, services, locations and ideas in a positive way. Showing the world that beauty is everywhere and that the only limitation is imagination.
I want to create a symbiotic learning and teaching environment in which each of the artists who collaborate to create the final product take an active role in sharing strengths and skills while learning others from one another in a positive environment and have fun while doing so. We are all at different stages in the learning process, and there is always something to learn; we just might not know what the lesson is until we have learned it. I feel our only limits are our imaginations.
