Just want to advocate for all of my fellow Dysautonomics who know all too well how J-tube (jejunostomy tube) feeding/testing feels. I have had a few tests via j-tube, while I was fully awake. I also have many Dysautonomia friends who receive all of their nutrition via J-tube. And even more, I have young friends who know how to put in and take out their own tubes (not that difficult really).
What does this have to do with Mos Def and the Guantanamo Bay video? The procedure in and of itself is not painful. On the other hand, if you are an inmate who's been refusing oral eating, and you're chained to a chair--possibly thrashing about--this procedure/torture could be the hell you never dreamed of.
Now, what is MissNikkiAnn's overall objective (since it's no disrespect to the art that went into that compelling video), I want my curious readers to know that J-tubes are a regular thing for us Dysautonomics--just like accessing our own ports and administering our own infusions at home. So take that information and imagine all of the other things that you don't about our lives with Dysautonomia. If you see me in a store with my walker, that in no way means that I am okay. The things that I have to do at home and at hospitals and doctor appointments will go unseen. The best thing to do is to assume that you can never grasp it until you (or someone close to you) is going through it.
Last year I was informed that I will probably eventually need J-tube feeding. And having had the J-tube procedure done many times for testing reasons, when my time comes, I will learn how to place and remove my J-tube, as I learned how to access my own port.
Funny how art can be interpreted--when I saw the video, I thought nothing of the inmates. My thoughts were on how strong and amazing my J-tube friends are. They shed no tears when showing us by video how they insert and remove their tubing. That J-tube is saving their lives, as they are no longer able to take in nutrition by mouth.
That last thought reminds me of something God said to Neale Donald Walsch in Neale's Conversation with God book. God told Neale to live. God did not mean for him to go out there and live life to its fullest, he REALLY and literally meant for humankind to stop thinking that it takes death in order to live.
Sounds confusing, right? It is so much easier to die than it is to live through human suffering, suffering that is a big and necessary component of the human existence. We did not come here to live simple and uncomplicated lives (at least, not this time around). We are here NOW in order to experience exactly what we are experiencing NOW.
Live. Choose to breath and live. Choose to endure all of the horrors until you find your way out of them. And if you never find your way out of them, choose to allow that to be your wisdom, the kind of wisdom that most people will never experience. Live. Live through needles and infusions. Live through feeding tubes and catheters and electronic implants that keep your heart and bladder and colon functioning until they no longer can. Live to see artists like Mos Def utilize their talents for the cause of others. Live to have empathy for war prisoners and the family that cares about them.
Live. Live. Live. Even if you have to live from a bed, as my dysautonomic friends and I have to. Because no matter what, the end WILL come. You don't have to force it. The reaper will pay us all a visit. And just because I am ill, it does not mean that you will outlive me. So live. Live. And live.
For those who are curious about the Mos Def and Guantanamo Bay references, here's the Mos Def video (and my thoughts are with all men--worldwide--who find themselves in prisons, enduring and trying to live):
Showing posts with label Support. Show all posts
Showing posts with label Support. Show all posts
Friday, July 12, 2013
Friday, July 06, 2012
Wednesday, June 27, 2012
Wednesday, May 02, 2012
MissNikkiAnn Supports: CT Seven Sisters (@womenwill)
Interdependence Day Is On Its Way
Readers:
The following email was recently sent to our supporters. If you are interested in our Interdependence Day, please contact Cassie at ct7sisters@gmail.com for more information.
~Seven Sisters
To kick off a season of resistance to the oligarchy, the seven sisters are gathering together all those throughout the state of Connecticut and beyond who sympathize with the international Occupy movements, all those who experience hardship at the hands of the oligarchy.
We declare Saturday, June 16th, 1-5pm @ Bushnell Park, “Interdependence Day,” a day for families, friends and citizens to gather together in recognition of their resistance to the oligarchy for a potluck in the park, featuring music, speakers, and information tables. When the uber-rich are threatened, they show police force, so when the people are threatened, it’s time to show people force. Let’s show the powers that be that we have numbers. Let’s demonstrate to ourselves that we have power.
For the past three months we have organized within Hartford, Bridgeport and Waterbury. Now that we have a permit, it’s time to push our organizing into overdrive, and for that, we need YOU!
We are asking of you the following:
1. Organize your community/neighborhood,
2. Identify the immediate needs and concerns of your community,
3. Locate speakers that can speak to those needs,
4. Suggest bands for the event,
5. Arrange carpools and/or buses, and
6. Be at Bushnell Park on Saturday afternoon, June 16, 2012.
Please respond to this email in the affirmative if you are able to organize your community and attend.
If you decide to participate, and in preparation for the big day, we will convene conference-call “town halls” for the day of May 16th in every place where we are organized to see how each of us can contribute to making this event a success. You will be receiving more information on the town halls in future emails.
Also, depending on your social media needs and preferences, feel free to:
- · Friend “Spring Forward” on Facebook athttp://www.facebook.com/people/Spring-Forward/100003568309330 to declare your attendance for the event.
- · Follow us on Twitter at https://twitter.com/WomenWill for in the moment updates and resources.
- · Visit our blog at http://www.ctsevensisters.blogspot.com/ where official up-to-date information can be found.
- · Email Cassie at ct7sisters@gmail.com with any specific questions or concerns.
Various groups and Occupies are planning direct actions throughout the state for the spring and summer. By gathering together for one day, in numbers, we can fuel our momentum for the season.
“Let’s show the oligarchy that we have power in numbers.” ~Seven Sisters
Sunday, April 01, 2012
Shit the Chronically Ill Say
This is my dear YouTube friend @debradebbiedeb.
Published with Blogger-droid v2.0.4
Saturday, March 24, 2012
What Dysautonomia Looks Like
I know this wonderful woman. And guess what? She is a medical DOCTOR. And guess what? Despite that fact, she received the same bad medical and psychological treatment that most dysautonomics face on their journey. Sad that a documented illness is unknown by the majority of those in the healthcare field. Help us to end the ignorance. Many of us are dying while doctors sit around scratching their heads, or more commonly, throwing in the towel. Guess what Elvis died of? He had dysautonomia and died from a typical complication that goes with it. You can also add Tammy Wynette to that list and most recently Brittney Murphy. And then there are my internet friends: gone. Help us.
Published with Blogger-droid v2.0.4
Thursday, March 22, 2012
Chronic Illness: The Truth Behind The Smiles
This is my story, too. And the story of my friends.
Published with Blogger-droid v2.0.4
Tuesday, March 20, 2012
Sex After Kids: a possible movie in the making...
I like the idea behind this film. And if I had money (I don't), I'd use it to back this film. But maybe you have money (I don't). And if you do have money (I don't), I think it would be a worthwhile investment for you, since you have money (I don't). Cool.
View the trailer...
Monday, March 19, 2012
"MNA: The Voices of Dysautonomia" newsletter, 3rd issue...
Is available...
Feel free to subscribe...
"Be good.
Be patient.
Be in the moment.
Be subscribed?"
~MissNikkiAnn (MNA), writer...dysautonomia patient...listening ear
Feel free to subscribe...
"Be good.
Be patient.
Be in the moment.
Be subscribed?"
~MissNikkiAnn (MNA), writer...dysautonomia patient...listening ear
Thursday, February 23, 2012
Dysautonomia Book... "No More Tears" Reading I: Author Note & Author's Thanksgiving (book by @DysautonomiaMD)
A book written for fellow dysautonomics, by a doctor living with dysautonomia.
Thursday, October 13, 2011
Area Colleges Announce support of Occupy Hartford (@OccupyHartford)
Area Colleges Announce support of Occupy Hartford
Great News: We have received a letter of solidarity from the faculty and staff of Trinity College, Central Connecticut State University, University of Connecticut and Wesleyan University:
“We faculty and staff members of Trinity College, Central Connecticut State University, University of Connecticut and Wesleyan University are in complete solidarity with the Occupy Wall Street and the Occupy Hartford protest. We support its demand for for social justice and real democracy. We recognize, too, the effects of the economic crisis on the conditions of life for millions of people in this country and around the world. We agree that actions to end this crisis cannot be based on the reduction of public spending and cuts to public services. Such discriminatory measures will further harm those who are suffering the most and prolong the economic crisis.”
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