What is beauty?

Good Morning,

Throughout the month of July, the BBC is broadcasting a new reality show-Britain's Missing Top Model. The synopsis reads: 8 young women with disabilities (ranging from missing limbs to hearing impaired) strut or roll their stuff down the catwalk/runway for the chance to win a photo shoot with one of Britain's top fashion magazines.

Maybe it's because I've seen one too many commercials where even the patriotic woman in the wheelchair makes it to the voters station on election day (shame on you lazy citizen!) but i like to think the British are perhaps a little more cultured or advanced than us...

somehow whatever they suggest sounds good to me

I receive an on-line newsletter from a disability podcast called the BBC Ouch! Podcast.

(podcast-think radio program you can download and take with you to listen to wherever, whenever you want)

Anyway, as one of the newsletter items there was a call out for disabled people to send in video clips of themselves introducing a BBC TV “programme” (I think that means program). The British Broadcasting Company seems very forward in its thinking and is using this month to include disability awareness among its programming. The British public is being asked to tune into and accept a reality TV show that has 8 young women with disabilities competing to be Britian’s Missing Top Model...and various others.

The rules were simple the lead-in must be 15 sec. or less and you must pick from among the following 5 shows.

Family Guy- the cartoon; a typical American family…apart from the fact that the dog talks and the baby is an evil genius.

Two Pints of Lager and a Packet of Crisps- a sitcom which follows the sex-fuelled lives of five early twentysomethings in the northern town of Runcorn, Manchester...vulgar language is also used, except that the word 'fuck' is uttered only once in each series, always in the final episode. (interesting)

Ideal- Ideal stars Johnny Vegas as Moz, a small-time, hash only, drug dealer in Manchester. Each episode is set within the confines of the flat, which he rarely steps out of, he shares with his girlfriend Nicki. He is constantly visited by, and treats with contempt, his varyingly bizarre customers, his supplier (a bent cop only known as PC) and a silent man with a cartoon mask stuck to his head.

Scallywagga is a brand new, lightning-paced and gleefully immature comedy sketch show on BBC Three. It's streetwise, urban and a little bit schoolyard: meet the likes of hapless teen Adrian...[, whose parents want him out and will go to ANY length to evict him, and]

Sooo,

This I thought you might enjoy seeing my entry.

What do you win? the selected clips will be shown on BBC TV for a glorified 15 sec. of fame.

This clip also includes my response to "What are your thoughts on the whole idea of beauty?" (this was option #2- there was nooooo way I could do this one justice in 15 seconds…or less. I’m a little afraid of meeting the person who could).



(video text)

What is beauty?

According to magazines it's an athletic or thin body, height, defined muscles, flat stomach, a walk that is self-assured and confident.

Long hair, dazzling smile, flawless skin,

I think there's also Inner beauty being kind, compassionate, having grace under pressure

it's a subjective quality but often used as something external and placed upon a person…in comparison to others

Beauty is in the simplicity of a design

In a dance movement as the rhythms of music flow through the body and are felt in the heart of the observer

it's where you care to rest your eyes and linger

Moments of connection and intimacy

Beauty is the language of nature…the voice of warning when it’s gone. Look at body of water, an expanse of land, see dead fish or strip malls...they don’t say back beautiful you get the sense or feel that something’s wrong

Beauty is vast, expansive, timeless; seamlessly connected to something bigger

Perfection in the moment; it comes with the understanding that while the past provided this moment it is no longer here and future will not sustain it. all of life is change

...i'm still enjoying my book

"People with paralysis are generally not particularly interested in supporting pure, curiosity-driven research; scientists, on the other hand, don't like being told what to do..." (Luba Vikhanski,The Lost Cord)

true! and...
true!

I am still enjoying my book on spinal cord regeneration.

I feel I have a foot in both worlds and have had to look into the heart of this issue.

The issue: it's political. how should people in power fund sci research when there are only so many dollars to go around and competing interests at stake?

People with paralysis can be said to be strongly in favor of applied research (give me my freedom NOW) while the scientist, must listen to the muses of science and sacrifice the gains of a few to uncover the underlying principle that will save us all! (this is called basic research to some very boring research to many).

Funding applied research is popular and fun. What better way to entertain yourself than with promises of getting to watch people dangling from harnesses over treadmills and then thanking you.(the paralyzed are an emotional lot and rightly so...we loove to write letters of our stories and inspiration. see how loud we clap at the one-armed soldier at the next State of the Union!!!)I can see why the decision-makers would want to put their dollars here. The outcomes are based on real people living right NOW with cures and medications that will benefit people in this lifetime.

I can also see why we'd want to funnel the resources toward basic research. To me basic research is applied research that just hasn't happened yet. While it rankles my feathers a little bit to read "several research teams demonstrated that new neurons can be born in the brains of rodents, tree shrews, and marmosets"(...now how in the hell is that going to help me?), I know Science is a discipline that proceeds in baby steps. You need to provide the...the underbelly from which the breakthroughs will spring! As the mystery is revealed, the entire course of human history will change-like the DNA double helix! The benefits are in the experiences of our lives AND in the generations to come.

Upshot:

for the politician or board members sitting in a committee meeting with one vote i believe deciding which research gets the grant is not easy.

Vote:

Those in favor of applied research?

Now have to answer...

"Applied!? It's not that easy!" There are still the difficult questions of how to distribute a cure? to who? These treatments also hold promise for improvements in lives of the newly injured. There remains the question then-"why not equal funds for quality of life/psychological needs of the chronically injured (read self)?"

Those in favor of basic research?

Perhaps still have the most intellectual freedom. I believe they have the opportunity to provide us with the "think outside the box" solutions.

For this I cannot rely on my science but on my uh Buddhism?

I say the days of lone renegades and rangers are gone. Reasoning "i don't like to be told what to do!" (in my lab!!!) is maybe smart but not wise. What those folks/research scientists need to do is cultivate wisdom (instead of publications) and understand that there are people and places where they can thrive (see book The Lost Cord for participating labs). Watson & Crick (??) are characters in a movie you do NOT need to walk underneath the Hollywood lights...just pool your resources, communicate, and get er done!

Go Team Rah Rah Ending:

i believe there is probably just this one life. so as the buddhist saying goes practice NOW practice because uh, your lab is on fire! ...no, no, no, practice like your hair's on fire!

okay still working on that ending...

amanda











*this is a marmoset. i still don't see the connection.

an apology

Dear Spinal Cord,

I feel I owe you an apology. That was incredibly ungrateful of me to call you dumb. Thank you for the ability to breathe, wash my face, brush my teeth, shower, feed myself...to take each step, to open my car door, to scratch my eye, wave at a neighbor, push down the accelerator, to sit in a chair, type on a keyboard, to fix a bad hair day, use a telephone, to lift both hands above my head and scream HURRAY, to fasten my seat belt, play a CD, wipe away a tear, pump gas, read a book, pet Mitty...

and of course DANCE! : )



p.s. i think we're all in trouble if we're needing Madonna to change the world : )

my spinal cord was flat out dumb this morning...

motor neurons take messages out to the muscles...sensory neurons take messages up to the brain.

none of this goes well when sleeping.

last night i must have been completely zonked. it was one of those rare occurrences where i slept the entire night and unfortunately did not move a single muscle. not once. not ever...when i woke up the muscle in my right hip (my butt) had that deep down pressure point type pain in it. and it HURT to move it.

here's the problem: i had to make a pee run. i do mean RUN!

second problem: when my hip hurts like this. i can't stand. when the hip muscle gets stretched sensory pain messages go to the spinal cord which in turn tells the hip to CONTRACT!!! every attempt at straightening ends in a spastic jerk punctuated by a punch of PAIN!

my solution: i guess someone needs to crawl to the restroom. on hands and knees..scooting along will keep the leg bent and hip nicely flexed.

...Mitty enjoyed watching all this. she escorted me. curiously involving herself in each "step."

sadness: I alllllmost made it!

triumph: at least i made it onto linoleum!?!...

PSSSSSSsssssssssssssss

poor Mitty. she hadn't a clue what to do. we both agreed this was completely uncalled for in the God department.

Good news. it is now 1:12 in the afternoon and the pain (after a morning of rest and STRETCHES) has subsided. i can now go on with my day. i will run, bike, elliptical as far as my legs will take me.

my spinal cord is not that smart

I just finished reading a chapter in my book (In Search of the Lost Cord) that I would title..."Hey your spinal cord is smart, but not that smart."

I have always been curious about those 20/20 or other news journalism shows that do investigative reporting on new treatments for SCI. One of the treatments that has always puzzled me is what I would call the "dangling puppet" treatment. This is where they suspend the poor person from a harness and dangle them over a treadmill while researcher/therapist types gather round and make the persons legs move in a disjointed steplike fashion as the belt picks up speed. I now think I know why they are doing this...

In these cases, the brain is no longer getting its messages through the cord. It can not tell the muscles down below how or when to step. However, our spinal cords are "smart." Within the spinal cord itself scientists have demonstarted there are "pattern generators." Pattern generators are circuits of information that nature has provided us as kind of a back-up for life's most important functions--like walking, pinching, grasping. Movements that allow for our survival. When the SCI injured patient is placed on the treadmill what they are trying to do is reactivate or activate these pattern generators. Without the brain's involvement they are teaching the spinal cord how to perform a basic albeit crude walk.

Here's how the spinal cord is not so smart...it does not come with a great memory system. It's not like the brain with its limitless capacity to store and generate information. The most we can hope for from this advanced "puppet training" physical therapy are a few simple steps. NOT the miracle of walking again as smooth and effortlessly coordinated steps.

okay, maybe what i'm really trying to say is that i'm a little disappointed to know where science is at with its "advanced" therpay.

It disappoints me that after all this effort the most we can hope for are a few simple steps.

This could mean advancement in the quality of life for some but I don't think it lives up to the expectations of many. For the well-adjusted few, taking a step and landing on the toilet will feel like taking that first step on the moon. Then they will be satisfied. For the rest of us, I'm afraid the question will still remain okay but when do I/we get to run?

it's science Sunday

I'm currently reading (...while training on the stationary bike so pleeease do not look for too much scholarly content here) the book "In Search of the Lost Cord" by Luba Vikhanski. It was published in 2001 and basically gives the history and the most up to date efforts Science has made to repair the damaged spinal cord. Most of the news I have heard before but I did find this one line of research particularly interesting. Have you heard of this thing called the stem cell? No really, anyone even remotely aware of politics probably would recognize this as a ripe are of SCI Research. The idea being, in the most scientifically perhaps not politically ideal situation, cultivating multipotent cells from human embryos that can then be induced to potentiate into healthy viable cells and transplanted to affect new growth into damaged areas. My reservation has always been that while this all seems good and possible musn't man then have to obtain some sort of god-like blueprint and mechanical abilities to redo the wiring? I can only imagine some confused little genie in there telling my right arm to flap when something smooth then sharp touches my left leg. What I was able to get out of at least one chapter of this book Ch. 12 "Mighty Cells" is that science doesn't need to know EVERYTHING before functional healing can begin. The idea researchers are working with is that they only have to do the "leg work" (i.e., cultivating and transplanting). Once the new tissue has been introduced it is nature itself that holds the key to unlocking the connections mystery.

Second Entry

okay, it's late but i just want to keep true to posting my entries

let's see...today was interesting because after i worked out, i had a phone message from the AB (i.e. able-bodied) person i've been helping to train. she's interested in losing weight and getting in shape for her Fall wedding. she was very happy and wanted to share her success in finding a new Jazzercise class...3 days a week! some days i wish i had the opportunity to find such structure and routine. i guess that's kind of a backwards way of saying there aren't really any disabled fitness classes for the DP (disabled person???) to attend. so what can you do when your body won't let you attend aerobics classes (e.g Jazzercise)? i run.