Monthly Archives: May 2014

Let it Go, Dr. Koh: The Truth Never Bothered You Anyway

Jeannette’s pure satire is poking a little fun at the government’s expense.  You certainly are a many-talented woman, Jeannette!  I like the idea of trying to get an M.E. patient or singing advocate to sing this song with your words.  Perfect!

Read the original post, in order to view and listen to the video.  Follow the words of Jeannette’s blog as the song is sung.

Thoughts About M.E.

After watching “Frozen” for the umpteenth time with our daughter, this line would not leave my head:

Let it Go, Dr. Koh: The Truth Never Bothered You Anyway

Of course, this is pure satire having a little fun at the government’s expense. So, here we go:

The cover-up’s on your desk tonight

No patient care to be seen

A kingdom of obfuscation

And it looks like you’re the king

IOM is howling like this swirling storm inside

Couldn’t keep it in, heaven knows you tried

Don’t let them in, don’t let them see

Hide the truth with your buddy Nancy Lee

Conceal, don’t feel, don’t let them know

Well, now we know

Let it go, Dr. Koh

Don’t hold it back anymore

Let it go, Dr. Koh

Turn away and slam the door

You don’t care

What the experts say

Let IOM rage on

The truth never bothered you anyway

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“When I am writing, I am trying to find out who I am.”

Maya Angelou was a remarkable human being, and this blog by Michelle on “The Daily Post,” is a fitting tribute.

The Daily Post

Maya Angelou by Spanglej, CC BY-SA 2.0.Maya Angelou by Spanglej, CC BY-SA 2.0.

Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning.

Find a beautiful piece of art. If you fall in love with Van Gogh or Matisse or John Oliver Killens, or if you fall love with the music of Coltrane, the music of Aretha Franklin, or the music of Chopin — find some beautiful art and admire it, and realize that it was created by human beings just like you, no more human, no less.

There is no greater agony than bearing an untold story inside you.

The idea is to write it so that people hear it and it slides through the brain and goes straight to the heart.

When I am writing, I am trying to find out who I am, who we are, what we’re capable of, how…

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Surprise!

This is a brave person who has “come out” about her PTSD. It’s not an easy thing to do, but it is a strong and courageous thing to do. Reality, I’m pulling for you. Keep strong!

What is M.E.?

I suppose people wonder about M.E. – what is it, and why am I, and so many others, advocating for this invisible illness?  My daughter is afflicted.  It robs sufferers of the lives they knew before M.E., and instead, they know pain and extreme, debilitating fatigue, from which there is no relief for so many.

There is a video on Youtube that can explain it very simply; however, this video was uploaded August 31, 2013, and the numbers have grown since then, for sure.  This video is dedicated to all those who have M.E., who had it (and died), and to those who will become afflicted in the future.  M.E. has no discriminatory problem with age, gender, socioeconomic status, race or any other poll-worthy category.

Please take the time (only 5 minutes) to watch.

Thank you.

Carol

My 6th Letter to President Barak Obama

Today, I mailed my sixth letter to President Obama, regarding advocacy for M.E. (myalgic encephalomyelitis).  In this letter, I quoted an excerpt from an M.E. sufferer who lives in the UK.  Her name is: Hayley-Eszti and by clicking on her name, you will be taken to her blog.

Here is the latest letter to the President:

Dear Mr. President;
Yesterday, I celebrated another birthday, and gratefully, have enjoyed a healthy life: however, there are too many people in this United States of America and in the world who, through no fault of their own, suffer pain and weakness.

My focus and advocacy is M.E. (myalgic encephalomyelitis). My daughter is one who suffers from the “invisible” disease that shows no outward signs of illness in sufferers; however, their lives are so affected as to have them cut short. Yes, some die, but the majority of the more than 1 million patients in the US and between 17 and 20 million globally, are relegated to house or bed, or have their quality of life diminished so that, in order to perform a daily task that would be “normal” and taken for granted by most people, performing simple tasks will force them to bed to “recover” from increased bodily pain and great abnormal fatigue.

Below are quotes from a blog, written in honor of International M.E. Week (May 12th), by a lovely 22-year-old UK patient who describes herself as a “bargain hunter/professional sleeper/lover of patterned trousers”:

“M.E. dominates every part of my life and I blog about my journey towards (hopeful) recovery and how I am trying to live a normal(ish) life whilst being a full time ill person. M.E is an illness that leaves a lot of people needing wheelchairs, but they aren’t permanently disabled which can leave a lot of sufferers being accused of faking their disability. Not all disabled people are permanent wheelchair users, and not all disabled people necessarily even use wheelchairs. The sooner that misconception is demolished the better.

Sufferers can (as long as they are well enough to get out of bed) hide those black eyes, put foundation on their pale grey skin, put clothes on, and smile as if nothing is wrong. Weeks prior to a trip out, are normally spent at home resting and preparing just for a few hours of normality, and weeks are spent in pain recovering from that one afternoon too. I think that is why a lot of people underestimate the severity of the illness – the real extent of it is almost never seen. M.E is alive inside of me, but the real me inside is just about surviving; she is definitely not living.”

Mr. Obama, please communicate with the HHS and Ms. Sebelius, letting her know that research to find a cure is important for these sufferers. First, the Canadian Consensus Criteria should be the US accepted diagnosis criteria. The illegal IOM contract to decide a diagnosis criteria is a waste of taxpayers’ money, when there is accepted criteria already. How can members of the panel, who are not experts on M.E., be chosen to decide such an important issue?

Did you know that there are the approximately same number of AIDS victims as there are M.E. patients in the US?  M.E. leaves the patients too weak, and they cannot advocate for themselves; hence, we, who are fortunately healthy and who care for our beautiful children, must do our best to raise our voices.

With Sincerest Wishes,

“Choose Kindness Over Judgement” by Dawn Helms

Kindness is as kindness does. It’s a good idea to not jump to judgment until we know all the facts. Let’s just be kind to our fellow human beings.

Kindness Blog

Choose Kindness Over Judgement

by Dawn Helms

Choose Kindness Over Judgement

We have all been there at one time or another: Sitting in a restaurant trying to have a nice dinner with your family, and sitting at the table next to you is a couple with two children. One of them is around two years old, and the other clearly around ten or eleven years old. You hear fussing and fumbling from their table that is getting progressively louder, and the disruption is coming from the older child. It is beginning to become annoying and you are uncomfortable watching this meltdown. You ask yourself, “Why are the parents not just leaving?”, or, “Why are they letting that child get away with that! I would never do that.” You scoff, judge and try to hurry through your dinner as quick as you can so that you can leave and not have to watch another minute…

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A Small Tribute

A small tribute to our fallen heroes, thanking them and remembering them for their service to make sure we are kept safe to enjoy the freedoms we have because of their sacrifices.

A small tribute, because there isn’t one great enough to honor them as they should be honored, in my opinion.

 

Volunteering Has Its Own Rewards

When I was in high school, I decided that I was going to be a nurse because I always wanted to “take care of people who needed help and to bring some happiness into their lives.”  At that time, I hadn’t realized what a noble calling that was.

One of my nursing instructors looked just like this!

One of my nursing instructors looked just like this!

But I thought that perhaps I should “test” myself and see how I would feel and react to a hospital setting and experiencing being with people who were ill and/or disabled.  I was totally lacking in that sort of experience.

So, during my Junior year, and during the summer, I volunteered in the “Jewish Hospital for Chronic Diseases,” in Brooklyn, NY, a hospital/nursing home for chronically-ill and disabled patients, with room for hundreds.  (I don’t think it exists anymore.)  The setup was in very large wards, containing approximately 20-30 beds.  No private rooms.  This was a hospital for indigent patients.

The hospital building looked somewhat like this - really old.

The hospital building looked somewhat like this – really old.

Those who were able, participated in a patient-controlled and staff-approved social club, and they managed to arrange for their own entertainment.  They were making the best of their situation – some would be there for the rest of their lives (many were young people).  In all the time I spent in that facility, I hardly ever saw visitors for the patients, but they seemed to have accepted their lot in life and they seemed happy and joyous and capable of, yes, excitement.  (Remember, I’m thinking back to the time I was a young teenager, and trying to experience again, my feelings and perceptions.)

There was an organizer/leader – his name was Manny, and he had his “secretary” and “treasurer.”  Manny was the most social person you could ever imagine.  He was wheel-chair bound and was one of the most intelligent, jovial, thoughtful people I think I had ever, and have ever, met in my life.  He was suffering from MS.

man in wheelchair

If the patients smiled and laughed any harder, I swear their faces would split apart.

Manny immediately put me at ease and welcomed me so warmly.  I told him I was there as a volunteer and had scheduled myself to give at least 10 hours during the week and some on the weekend as well.  I made his day and many more.  During the summer, I devoted more.  Visitors were a treasured commodity.

I found myself feeling that I found a second home.  The best thing for me was the feeling of great joy that I felt, in the giving.  Yes, volunteering had its own, unexpected, rewards.

Volunteering is more than it's cracked up to be.

Volunteering is much more than it’s cracked up to be.

[All images from bingdotcom]

What Will Matter? ~ by Michael Josephson

Life really comes down to the very basics. Beautiful thoughts.

Kindness Blog

ways-to-love

What Will Matter?

by Michael Josephson


Ready or not, someday it will all come to an end.
There will be no more sunrises, no minutes, hours or days.
All things you collected, whether treasured or forgotten, will pass to someone else.

Your wealth, fame and temporal power will shrivel to irrelevance.
Your grudges, resentments, frustrations and jealousies will finally disappear.
So too your hopes, ambitions, plans, and to-do lists will expire.

The wins and losses that once seemed so important will fade away.
It won’t matter where you came from, or on what side of the tracks you lived, at the end.

It won’t matter whether you where beautiful or brilliant.
Even your gender and skin colour will be irrelevant.

So what will matter? How will the value of your days be measured?

What will matter is not what you bought, but what you built;
Not what you got, but…

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Memories of a Time Past: Part 2

It’s been a while since I wrote Part 1; many things have got in the way of starting Part 2, but here I am again.  I have to “stoke” the fires of my memory because this one goes back – way back.  Since it’s nearing Memorial Day, my thoughts have turned to wartime, and trying to remember some cloudy sights and sounds.  Bear with me.

It was during World War II.  My earliest recollections as a very young girl are of gathering around a piano.  My parents were very friendly with some couples:  Ruth & Marty and Evelyn & Paul.  I believe my mother’s youngest sister, was there too, since she was married to Ruth’s and Evelyn’s brother and he was away at war.  She was very close with her in-laws.

I remember the Brooklyn apartment that Ruth and Marty lived in.  It was above a “dry goods” store that was owned by Ruth’s and Evelyn’s mom and dad.  They sold “necessities” like underwear, socks, kitchenware, aprons, children’s clothing, shoes, etc.

A typical dry goods store.

A typical dry goods store.

There was a private area at the back of the store where my aunt lived with my uncle until they were able to find an apartment.  They brought their first-born (my cousin) there after he was born.  During and after the war, apartments were a very difficult commodity to find.  So, even though extremely tiny, it was just enough for the time-being.  During war, people “made do.”

Ruth and Marty’s apartment was also small, but they did have a separate bedroom, kitchen and living room.

I had good, happy feelings when we visited Ruth and Marty.  They were a very lively couple, especially Aunt Ruth (I was told to call her that, even though she wasn’t my aunt) – she was extremely outgoing and welcomed everyone with open arms all the time.  Singing was a way to try to put the thoughts of war and our family members fighting in Europe in harm’s way, aside.  I always had a jolly time there, with Ruth’s sing-a-longs.

Piano sing-a-long.

Piano sing-a-long.

The popular song that I remember most was, “Sentimental Journey.”  Aunt Ruth had the sheet music sitting at the piano, and we all gathered ’round and I read the words so I could sing, too.

I remember when there was sirens and a blackout, all the shades and curtains had to be tightly closed so no light would show through to the outside.

Double curtains made sure no light was seen from the outside.

Double curtains made sure no light was seen from the outside.

When those sirens sounded, we left the apartment and climbed a ladder in the hallway which led to the narrow opening onto the roof.  Fortunately, everyone at that time wasn’t overweight, and we all fit through!

There were specific things to do when the sirens sounded during wartime.

There were specific things to do when the sirens sounded during wartime.

The view from the roof was scary to me, I remember.  It was high for a little girl, and the spotlights moving around the sky were frightening.  The night was warm – we didn’t have to put on any coats, as I remember.  It was only a drill, but to me, it was real.  We were there for some time, and then we were able to go back down into the apartment.

Another thing I remember during wartime:  we had a “Victory” garden in our back yard.  Between my father’s and his father’s work, the vegetables were beautiful.

A Victory Garden - very popular during World War II

A Victory Garden – very popular during World War II

Grandfather would chase down after the horses on the main street with his pail and shovel, to scoop up their droppings to use as fertilizer for the veggies.

I also remember that, during the war, my father’s brother’s wife, my Aunt Millie, lived upstairs.  The small bedroom was converted to a kitchen.  My parents gave up their bedroom, and moved downstairs and the living room became their bedroom, and I was relegated to the front “porch” room where there was no radiators.  It was freezing in there during the winter and I remember shivering.  I was still in a crib because there was no room for a bed in there.

My last memory during that time was when the war was declared “OVER.”  I was allowed to stay up late.  Even if I weren’t, I never would have been able to sleep.  The whole neighborhood was whooping and hollering and I remember the banging and clanging of people running out of their houses and banging spoons, and all kinds of things on pots and pans, to show their joy at the war’s end.

World War II is over!

World War II is over!

All my uncles came home in one piece!