marlaina's musings

This is a hard one. I think for me, the most challenging part of the holidays is when I don't feel peaceful, and am having a lot of pain. My health is always impacted this time of year. I can't go shopping for long periods, and because of where I live and my multiple issues, transportation is difficult. It usually takes several trips to get things for people, or if I get my act together, I can sometimes buy things online.

It's hard to take care of myself right now and not feel guilty about it. As a kid, guilt was never part of Christmas, but as an adult, it definitely is. I honestly worry that I don't give enough to others, both materially and emotionally.

On the other hand, there are a lot of changes in my life recently and I am experiencing life more fully. There are tons of blessings, like new hobbies, new and closer friendship relationships and a feeling of grattitude for life. Even when I eat, I experience flavors more fully. So in many ways, I actually enjoy the season more, if not for the guilt factor.

It hung in the air like a silvery thread, like the vibration of a bell that had been struck. The next followed, then the next.

I turned my head at the first touch of the silvery sound on my ear and began to move toward it, drawn as a moth to a flame. From that first silvery sound, I had known what the instrument was: The celtic harp. I didn't much care that Mom was asking me what I was doing: The spell of the instrument had caught me, and I *had* to find out who played so beautifully now. It was all I could do to keep from singing when I got to the player: She was performing a song I recognized.

***

I had been waiting for the bus on a Friday at FGCU and walked into the student union, and stopped to rest for a bit: My suitcase was not the lightest thing to carry. Even if it did have wheels.

Then I heard it: The thrum thrum thrumming, and began to walk in ttime with the beat of it, barely aware of my own movements until I was nearly upon the player of the drum itself. My thought on my way there was how very good he was, and I would one day like to play like him.

***

These are two examples of friendships that have beecaune because of the touch of music. Perhaps I shouldcall one an acquaintence: I have never again met the drummer.

The harp player however: I now see her once a year, every year, at a Ren Faire down here.

From that one touch of the harp she held, came the warm glow of a friendship, one that, though we don't see each other much, I consider very dear to me. She and I will sing, sing together every year, and it is just amazing, and is one of the high lights of my year.

This entry has been written for therealljidol Thank you for reading.

Another book? Maybe! If you want it. If you're interested, or even if you're not, please take my
iPod Touch book survey

This is a hard question to answer. There are times when I wish I could freeze my body and not experience the pain of RSD and just wake up when RSD doesn't exist or has been figured out. I get so frustrated with being ill and in pain, and all the baggage that comes with it. But it also brings great opportunities with it! I've learned so much from the way my life is. So, yeah, I do fear I'd miss out on something good that might come out of it.

I guess it depends on the day. When my pain is bad and my body is uncooperative, I wish I could just sleep until they can fix me. But then there's the part of me which knows that my blindness, something many consider to be a terrible affliction has brought me great opportunities. I'm just starting to see some of those blessings in my RSD life, and I do try to focus on that instead of the pain but it's hard to do.

I also fear I'd miss the chance to help others. When I self-published
my book
I found out that many people did like my writing and some even say it helped them. And even though I haven't been blogging as much, I used to get comments on entries that helped others. If I can be used by God to help otherss, who am I to stand in the way of that by escaping a situation I don't like? It's not easy, and I don't walk around smiling all of the time, but there are so many good things I'd miss out on, I guess I'm not sure what I'd do. Given the choice, not considering anything else, I'd get rid of my pain, and if I find a treatment that works, I'll use it, but for me to just take myself out of the equation might mean fewer blessings for me and just maybe for others.

Iwould like to send outa thank you to regeneration for theveirtual gift. :) I was not expectingit, and it was awesome, so thank you.

Also happy birthday to thos I've missed; I sincerely appologixe for that. I hope you all had awesome days.

Phoenix

Recently, CNN ran an article entitled
Dance Class a Gift for Special Students, Instructor
this caught my attention because from the age of seven to the age of sixteen, I was a dancer. Every two weeks, one of my parents and I went to a dance class specifically designed for students with many types of disabilities. I think that wheelchair dancing was on a separate day, but each student had her/his own unique needs. I remember that at first, I couldn't understand many of the concepts, but as I got older, I came to look forward to the movement, the music, the social interaction.

I once attended a ballroom dancing class specifically designed for people with visual impairments and would've continued to do that, if I hadn't gotten RSD. Even so, dancing was a huge gift for me.

Oh, the pain!

I'm not actually the only one who got RSD as a dancer.
Cynthia Toussaint experienced this too
her story is both heartbreaking and life affirming. While dance brought both of us pain, I can only speak for myself when I say that I wouldn't go back and not have danced.

Dancing for Healing

But dance can bring healing and transformation., too. In fact, there's actually a therapy known as Dance Movement Therapy. I was blessed to participate in one class of this, and I found it beneficial.
Dance Therapy

The great thing about dance is it doesn't have to mean fancy footwork, performing or even getting all of the moves right. Dance can be an expression of emotion, and even a stabilizer of emotions. The one rule I follow is to listen not only to the music, but also to my body. Do I need to dance from my bed or a chair? That's fine. Do I need to modify a movement because it hurts? Okay. Do I need to just imagine myself dancing because the thought of moving makes me ill? Then that's what I do.

Much of this I learned in the class I took, but I've also been fortunate to be a reader of the
Dancing with Pain Blog
I'll be honest, when I firsst became aware of this blog, I thought "I'll never be able to dance again", but I kept reading. The class I was a part of and the new iPod Touch have motivated me to start using dancing to help me heal. These are the benefits I've noticed so far:

• Less stiffness.


• Some pain relief


• Relief of feelings of anxiety, worthlessness and sadness


• An overall boost to my self-esteem

Dance isn't a cure all for me. I still have bad RSD, but it's one tool I can pull out to make myself feel better.

So how Does a Blind Person Dance?

I get this question a lot. I got it with Tai Chi too. I don't know what others prefer to do, but here's how I learned. Basically, learning dance as a blind person required a lot of trust. It required feeling others move and moving myself. Sometimes, it required letting someone else move my arm or even my leg (with additional physical support). But when I think about it, most of my knowledge of dancing says that that's true whether you have a disability or not.

How I dance now

The way I dance now is obviously very different. I have less trust when it comes to touch, and some movements aren't possible for me right now. I have to be much more aware of what my body is telling me. Is it a "hurts so good" moment or a "bad hurt" moment? Am I close to something painful? Does my body want to do this movement? How do I feel emotionally when I move this way?

All of these are factors, but the advantage is that these should transfer over to the rest of my life. That kind of check-in is important whether you're ill, well, dancing or living!

Guiding my Steps

Of course no discussion of dance would be complete without talking about dancing with a partner. Obviously, I started to learn this in ballroom dancing, but the times when I dance with a partner most are when I work with Julio. As we weave through tables at a restaurant, I must trust him and let him lead me. I must be responsive to his every move. This article
Dancing With Dogs
gives me goose bumps, especially now that I'm traveling with Julio again. I've been given the gift of a wonderful leader, and am
experiencing that joy more intensely than ever
it truly is like dancing.

A Few Motivating Videos

If this post hasn't inspired you to dance, and the other sites haven't, maybe these videos will:

• Everybody's Free to Wear Sunscreen


• The Dance (Garth Brooks)


• I Hope you Dance

One thing with which I've always struggled through as a writer is stories. I feel that many times, my skills are much better in the areas of "this is what I did", "These issues are important" or something which doesn't necessarily have a plot line. I love a good book or audio which has a good story, but for the life of me, I can't seem to write them. I believe I have a lot to write, whether it is fiction or non-fiction, but creating a plot and using other elements is harder for me. Recently, I became even more aware of this deficit in my writing when PBS aired a special about how
Bill Cosby won the Mark Twain Prize for American Humor
See, it all started with the dentist skit and went on from there. Now, I'm sitting around laughing histerically at some of his albums.

My favorite one is the Noah piece. If you watch it, it's available on the Best of Bill Cosby album or I've linked to it on Twitter before, you'll see that he can carry some theme from piece to piece. My thoughts are "How does he do that?" It's amazing. So three million cheers for Bill Cosby because he can get me out of a bad mood!

But back to the writing. I find that weaving together plots like that is incredibly difficult. If you write, do you have this problem? How do you manage it/ If you don't write, feel free to comment with your favorite Bill Cosby moment!

Yeah,, I've fallen victim to a few hoaxes in my life. Mainly as they relate to my pain and things I thought might work. My biggest purchase in that area was a home biofeedback unit (supposedly). Now, I always read reviews, reviews, reviews.

There have been other products which promised to do more than they did, but sometimes I'm not totally sure if they're a hoax, or just don't work for me.

If you've noticed that I haven't posted much, you'd be right. If you want something to blame, for once, you don't have to blame the pain. No, instead, I'm busy playing, learning and occasionally uttering a choice word or two. I've been making jewelry, dancing as my body allows and playing with my new toy. I decided to but the apple, er, I mean bullet and get an iPod Touch. I have to say that the experience I've had with the product and the service I received far surpasses other experiences with mainstream products.

First of all, it's important to know that the iPod Touch's third generation is accessible. It runs Voice Over and this can be enabled either by someone sighted (mine was enabled at the Apple Store), or by a blind user using iTunes. This is huge, because if you're smart enough to read this blog, I think you have enough computer knowledge to deal with enabling Voice Over. The advantage to going to the Apple Store is you can learn how to use the product and get help. I visited once before the time when we made the purchase. This is one case where i'm glad to have the Apple After Care Plan, which means that I have even more access to technical support.

What impresses me the most is that I can get the support I need from a mainstream company. I know that in the past, Apple hasn't been the most accessible, but now they've definitely made a huge leap forward, in my opinion.

I'm currently learning to work with this product and am hoping to be able to blog on the topic more. I'd also like to create an E-Book about my experience with the Touch. Next time, I'll talk about the resources which are helping me and thank those who have been there answering my many questions. For now, here's
Apple's Description of accessibility features on the iPod Touch