Brass and Ivory

The National MS Society is looking for your input.

"We are in the process of gathering information that will help us understand what needs to happen - and change - to help people affected by MS keep moving their lives forward. This data will help guide the Society’s direction for the next five years."

As the NMSS is working to expand their outreach online, here is your opportunity to have your voice heard. Please consider letting them know what you envision.

www.nationalMSsociety.org/srsurvey

The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.

The Nap Taker

No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.

And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.

"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.

"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."

"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,

"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.

"Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again."

With the intent to improve my diet in recent months, I’ve been spending more time in the kitchen. Trust me, I’m no chef, but I can follow a recipe. I even own a Better Homes and Gardens Cookbook.

Even before my rheumatoid arthritis was diagnosed, I had started purchasing things for the kitchen which would prove to be quite useful. These items help when the hands are sore, swollen, and weak, since they require much less effort to hold and use. Even when the hands are feeling strong, they just make things easier to accomplish.

Read this post in its entirety:

Five Kitchen Tools to Make Cooking Easier

In my last MS HealthCentral post, I provided a list of places that may be able to help you with financial assistance for your MS medications. But these are not the only costs associated with MS. In addition to pharmaceutical assistance, there are programs available to address other needs as well. The primary organizations which offer assistance specific for MS-related needs include the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America.

Read this post in its entirety:

Financial Assistance for Other MS-Related Needs

A Swing and A Hit for Violinist
Musician Plays Instrument Crafted From Baseball Bat

By Anne Midgette
Washington Post Staff Writer
Saturday, July 4, 2009

"I just decided, 'Well, let's see if I can make one,' " says Glenn Donnellan, a violinist with the National Symphony Orchestra. "I thought it would be cool to say to the kids, 'Hey, you can make your own.' "

The object in question is an electric violin made out of a baseball bat. And the answer is, Yes, he could.

Just in time for the Fourth of July, Donnellan posted to YouTube a video of himself playing the national anthem on his electric baseball-bat-violin. He didn't necessarily mean the clip for wide circulation. He put it up because a friend with contacts in the Washington Nationals front office wanted to show it to his bosses and ask about having Donnellan play the national anthem for a game. But there are no secrets on YouTube. By Friday, the video had racked up a respectable 1,600-plus views, and some enthusiastic comments. "Totally bat-ass!" one viewer wrote.

Donnellan made his bat-violin when the orchestra was preparing to go to Arkansas this spring for the 19th of its annual American residencies, which offer concerts and outreach programs in areas of the country that may not be well served with classical music. He was looking for an instrument to use in a children's concert; he had done the same program in D.C. with more standard electric fiddles, but he had only borrowed those instruments and couldn't take them on tour.

Not everyone might have come up with his solution, which required hours backstage at the Kennedy Center, using the stagehands' drill press to make holes in a baseball bat. "It's tricky to drill a hole in the handle," he observes. "If you use a small enough bit, it wants to drift." He adds, "You'll see how [the bat-violin] is kind of crude at the bottom."

On the contrary, the video is downright elegant -- both for the instrument, narrow and compact, and for the playing, executed with cool aplomb. It's certainly not your typical classical-music approach to the national anthem. There are overtones of Jimi Hendrix in the reverberant electronic sound, though the arrangement is actually Donnellan's own. (The video appears on YouTube as a "video response" to Hendrix, but Donnellan says that was an accident; new to the site, he randomly clicked a lot of different links when his post first went up.)

Donnellan has been with the NSO since 1997; his violinist wife, Jan Chung, frequently plays with the orchestra, too. (They have two children: Adrian, 8, and Katherine, 6.) On his own time, Donnellan tries his hand at fiddling and experimenting with jazz. "Jamming with a guitarist on 'Hotel California' at the California Congressional offices on the Hill, and with kids playing the Blues in Mississippi were some of the most fun and memorable musical experiences I've had," he writes in a follow-up e-mail. "In terms of playing outside the classical box, I think that if you can feel it, you can play it."

The instrument had immediate resonance in Arkansas. Iván Fischer, the NSO's principal conductor, happened to see Donnellan playing it backstage and immediately had to try it out. Now, Fischer wants one of his own. "I just haven't had time to make one," says Donnellan.

Chris: My Journey with MS by Christina
For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.

DA's MS Mumblings by Dabble
I'm a nurse, writer, painter, vaguely creative soul, former pet owner and optimist. I'm also a person with MS. There are a lot of us out there. Coping with Multiple Sclerosis is never easy - this is my cheery account of how MS has given me a wonderful gift....or alternatively, how MS has #%@^!%%!'d up my life.

The Danielle English Mix by Danielle
In 2002, I was diagnosed with MS at the age of 17. The disease and I finished high school together, earned a Bachelor's degree and we're working toward a master's. I have multiple sclerosis. But what does that mean in the age of Web 2.0? That's what I'm trying to figure out. Welcome to the Danielle English Mix.

Healing Through Multiple Sclerosis by Cathy
The most power is held at the edge of things; as day moves into evening, the seemingly instantaneous arrival of an idea, the moment of conception or the delivery of a diagnosis of Multiple Sclerosis. What was before can never be reclaimed and the road ahead is a mystery. There is the scent of dread as well as adventure. The territory is far from static and infused with the specter of grief and the anticipation of a miracle. How can one not be interested in this landscape?

Playing the MS Card by Jenny
I don't feel good. I was driving home from work last night and this wave of exhaustion came over me where I could barely hold my head up. I'm not exaggerating. It took everything I had to make it home from work. This is the first time I have actually contemplated pulling over and calling my husband to come get me. I can't stand feeling like this. It puts me in such a funk. Has this ever happened to anybody else? Whenever I am this tired for any length of time I seem to get sad or depressed. I don't deal with it very well. I have to work on this. It's awful!

Standup4MS: a story of mobility rehabilitation by Laurence
This might not be glossy but I hope it will enrich some experiences... In January this year, I was pleased with what I had achieved even if I had been told that I would have to use a wheelchair for the rest of my life and that nothing could be done. I was also repeatedly advised not to try standing on my own. I had to try this to see if I was getting any stronger. Standing helped keep my spirits up! I had been given a list of exercises, which I modified to fit with the care assistance I received.

This is my life and all that goes with it by Mike
This is for when I have something to say but nobody to say it to. I suffer from MS and Diabetes as well as an insane addiction to coffee. I am who I am and nothing more. I hope you find something here that interests you and if not then let me know what does and I will see what I can do.

Thoughts from my Broken Brain by lunafemme
What I am experiencing is transitory, simply a moment in time. I do not accept this moment as permanent.

Utterly Bloggered by Grace
My thoughts on life, living with Multiple Sclerosis and everything else. Dive in, take what you like and ignore the rest.


Other links of interest:
A Voice for MS

Medicare vs. Medicaid Hell

MS Research Seeks Help

No Time For MS (which has moved from Blogger to Wordpress)

Vitamins, Minerals, Supplements, Diets - Oh My!!!

Here is one of my favorite orange shots. I took it in 2007. it was one of my first macro shots that captured what my eyes and brain were seeing.

I loved the powder laying there, the pollen, ready to perpetuate the species.

I have always been fond of bright colors. Orange is one of those colors that I can not wear – it makes me look jaundice, as do browns, and yellows.

Noticing the little things, the small details that many pass by, comes naturally to me. I miss being able to hike somewhere and find the little hidden gems. Colorful moss on a rock, rusty old nails along a shore where a town used to thrive, and birds resting after flight.

Sometimes it really pisses me off when other bloggers with MS write about all the cool things they are doing. I get jealous. Then again the MS Societies pamphlets, videos, etc. usually show young, good looking people that relay a positive outtake – good PR? Trying to keep us positive?

I am not so positive about my vision doing wonky things. I hope sometime this summer my eyes will be clear and my balance and legs muscles will allow me to get out and snap some shots. My camera has the fully automatic mode but it just kills me to dumb down and use it.

I had a dream the other night were the orange flowers were turning into the orange logo’s of MS. I woke up thinking how crappy that was. There I was hiking up a hill and every time my lens was focused on the poppies they turned into out of focus MS logos! How suck-o is that??

Finding the Muse by Nadja

I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--

I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.

It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine

Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.

I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes

Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.

I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--

What is perspective? It is more than just how we view everything. Perspective is how we choose to view everything.

Do we really have a choice about our perspective?

We make decisions all day long: what to eat, what to wear, what to do, etc. We are in complete control over those decisions. Yet somehow, we think or have decided that there is a distinction between those seemingly ‘practical’ decisions and the decisions we make about the feelings that we have.

The fact is each and every one of those practical decisions is based on feelings. We even use language that confirms that we have control over these feelings. “What do you feel like eating?” “What do you feel like wearing?” “What do you feel like doing?” At a minimum, we all have to agree that we have control over at least some of our feelings. That leaves us with only one question: why is it that we control some of our feelings and not all of them? The answer is simple. It is because we choose not to.

Aren’t some of our feelings beyond our control?

Choosing not to have control over some feelings, serves some people very well. If we do not have control over something, than how can we possibly be responsible for it? There is a certain logic there, albeit flawed logic. The reason it is flawed is because it is not true: if we agree that we can control at least some of our feelings, then logic says we must also have the ability to choose which feelings we control.

As adults we make decisions all day long that are based on our feelings. The next question is what distinguishes the feelings that we control from the feelings that we do not control? Is it the strength of the feeling? Is it rage? Depression? Euphoria? Whatever the reason is, who determines the controllable feeling from the uncontrollable one. The answer can only by us, ourselves. Yes, it is true and it does happen that sometimes decisions are made for us. But no one other than ourselves can decide how to feel. In other words, we may not be able to control all that happens in our lives, but we are always in control of how we respond. We get to choose our perspective.

Perspective is deciding how we feel.

Only we can make the decision about how we feel. Only we can know the reasons or reasoning behind our decision. It may be that we don’t know the reasons why we feel a particular way. But whether known or not, our perspective is our decision. It includes every moment of our history, every feeling that we have ever had, the sum of all the experiences that brought us to this time and place. Our perspective is our choice and no one else’s.

Do we always exercise control over our perspective? No, because we are still human and still fallible. But knowing that we do have a choice and that we can often do better, may help us in choosing a better perspective.


This concludes the 39th edition of the Carnival. Comments for this post.