My Brain Stretches

Sundance Film Festival Trip

alo12 — Wed, 07 Jan 2009 06:54:00 GMT

Greetings,

Time to get out my Cuddle Duds! I'm gettin' ready to rub elbows with the stars!!! I've been lucky enough to get invited to the 2009 Sundance Film Festival in Park City, Utah. From January 20 thru the 26th, I will be hanging out with a class of college students studying documentary film-making and serving as a "special consultant" on their group project. In theory, the students will be making a 60 min. film on some aspect of disability and culture.

While I'm excited to have this important opportunity to help mold young minds, I'm perhaps a little more excited to be working on my own project while I'm there. I'm planning to do some video blogging for my Monday Morning News & this blog.

In preparation, I've been doing a little research. I thought you might enjoy some of these interesting facts.

1. avg. temp in Park City for January- 18F (...what?)
2. avg. snow in Park City for January- 73 in. (huh?!?)
3. base depth "snow already on the mountain..."- 53'in.

(oh no no no...)

4. "Each year more than 50,000 people attend screenings...in addition to discovering filmmaking's newest talent...Festivalgoers experience..."

(frostbite? maaaan that's cold)

5. the Sundance Film Guide can be found at

http://festival.sundance.org/2009/

it is frustrating to me that of the over 200 films offered i could only find 1 that seems to include a character or protagonist with a physical disability...

Amanda

p.s. ...Walking Times Egyptian Theater to Eccles Theater. 2.5 miles 50min...

BRRRRRRRRrrrrrrrrrrrrrr

Life as Usual

alo12 — Fri, 19 Dec 2008 10:07:00 GMT

I haven’t heard too much from my dad lately…It’s funny what love can do to a person...Monday night dance lessons…“Is it Friday yet?" Wednesdays... It's Friday night Date Nights!!!

...weekends once filled with those lonely cold drives to the boys high school basketball games are now spent zooming the chariot between cities to woo his fair haired lady!!!

But as in every life once the craziness ends one must find balance. Every once in awhile Dad returns to our routine Sunday night phone call and drops anchor.

Last weekend I learned...

At least in some of our nation’s banks, it’s pretty much life as usual.

Dad needed to use up his vacation days before the end of the year. With every holiday ribbon already strewn through the table settings, each little jingle bell already adding that "extra little touch" to the windowsills...He had decided to take the week off to do a little x-mas shopping.

If you can recall from "Dad's Who Date," (an early writing) my dad...loves Christmas! but i think he just really likes decorating for it.

As our Sunday evening phone conversation dwindled to pauses and repeat topics (Brother would you please call Dad?), I could see the worry crease in his forehead deepen. The first step to this chore began with...getting a list.

Dad needed the "30 seconds to Talk Me Down" Rachel Maddow segment.

"Dad,” I said, “x-mas gifts are not that hard. just think of something you like about the person or their interests and support them."

i gave the encouraging "...and it doesn't have to be big."

"well, you know, maybe you could just jot down a couple items. i promise i won't get you any clothes...you know just a couple items as you think of them..."

I've noticed even the experts can't talk Rachel down so i didn't feel too bad about may failure to reassure.

i simply promised to call with a "Dad Do-able" x-mas list ASAP!

As some of you may know, I am recently CPR certified (thank you to the two people who will accept my assistance)...

I’ve learned that in order to tell if your loved one is having a stroke you can use this simple check list FAST!

F- face- face droopage
A- arms- weakness or numbness in one arm
S- speech- slurred or difficulty getting words out (caution: also seen in other conditions such as sloppy drunkeness)
T- Time to call 9-1-1 if you see any of these signs!

or if you're like me i say...

If you would like earlier signs, check the status of their answering machine message. I believe a sure sign an aging parent is slipping a little is when they can no longer figure out their electronic equipment.

So...back to my story

For a full 10 minutes i sat pen in hand and brainstormed ENJOYABLE DAD SHOPPING ITEMS...

I dialed home early during peek alertness hours on Monday morning.

"This Power Star user is not available...beep."

I hung up unsure what to say to Dad's automaton.

Then I remembered the significant windstorm and that my dad no longer attempts to personalize or reset the answering machine message after a power outage.

(Had I more time with that greeting I think I would have left a rousing rendition of “I’ll Be Home for X-mas.” the voice of the automatron just fills you with the spirit...I'll be home for Chriiistmaaaas yooou can count...click...goodbye).

Determined I called back. I had just under two seconds to blurt out.

“a nice piece of luggage!” (click)

There was no reassuring telephone number to check with. I just had to take that leap of faith that it's the person you are calling and not some stranger who will hear you say...

"and maybe some bath towels?..."

I took a breather and tried again at a different time of day.

Beep…

“Dad I would like bath towels…(click) a GPS system, night vision goggles and a robot!”

and again...

"Dad, I would like a piece of luggage, bath towels and (click) curlers for my hair damnit!"

beeeeeep

“Dad, it’s me please check your e-mail!”

There are many things I am glad did not get recorded when leaving my harried two second Christmas list.

I've just learned during the course of the week, my dad has done his shopping. No list. So, this x-mas I am looking forward to opening my new puffy yet tasteful dressy-casual vest…urrg! Life as usual.

if i do not post again sooner Happy Holidays!

amanda

*please do not misread. i appreciate any and all Dad shopping efforts. It's just the confounding of the x-mas spirit that troubles me here.

because the world needs more chair dancing...

alo12 — Thu, 20 Nov 2008 19:17:00 GMT

So, with all the troubles going on in the world these days Mitty (the kitty) and I decided to do out part to raise happiness awareness. We held a "Saturday Night Dance Party!"...with two attendees. : )

If you follow this link, you will experience some meeeean chair-dancing : ).

http://www.youtube.com/watch?v=sj1IFyQ0P64

feel free to cop my moves : ).

Keep on Keepin' on.

Amanda "A-lo" & Mitty "Mix-a-lot"

p.s. *warning FloRida's lyrics are EXPLICIT. you may need to cover your ears.

Walking into Walls

alo12 — Fri, 14 Nov 2008 08:07:00 GMT

Good Evening. (...or morning...late afternoon, wide-eyed can't sleep 4am?)

I had another disability experience this week I thought I'd share. Recently, I had a filling fall out of one of my teeth. Being one of the many dentally uninsured Americans (luckily without pain) I did not seek immediate care. Instead, I estimated about how long a steady diet of Froot Loops can last without an exposed tooth requiring a root canal...

after determining that 9 months was probably a bit too long to wait for an appointment with the OSU dental students (if you agree to "guinea pig" it you get a cheaper fee), i relied on a friend for a referral to a local dentist.

when i arrived for my first appointment this Tuesday. there were two orange barrels strewn with yellow CAUTION tape blocking the door. maybe i should have taken this as some sort of guardian angel's effort but i didn't. instead i simply approached the closet man in a hardhat and asked for a safe or alternative entrance into the building...

once inside the building, i found the floors had been stripped of the tile and provided a paved path of industrial glue residue anywhere carpet might have been.

after some wandering, I found my way to the dentist's door. i am not sure of all the other services offered in this building (accounting, real estate, law???) but i assure you there were many.

my stay in the waiting room area was no Comfort Inn but it served. after checking in at the desk, i sat down in a fabric covered waiting chair and slept... i am embarrassed about this but also realize there's not much you can do to fight sleep in the 'bewitching" hours. Those late afternoon hours between 3-5pm, that our neighbors to the South have so wisely called "siesta!"

the dental assistant opened the waiting room door, called my name off the clipboard and i jumped!!!!! awake!!!!

i am not steady on my feet after any kind of nap and especially start off in all directions when my legs have tightened from sitting (and sleeping) too long in a chair. i tried to follow the assistant through the maze of hallways and side offices...but instead ended up banging into almost every door frame and available wall space. Finally, i entered one of the offices and landed it safely in the dental chair...

okay all this was NOT the problem that has prompted me to write this tonight. the problem was what happened next. as i reclined and watched CNN on the TV monitor hanging above...i did not fall asleep...go figure...the dental hygienist entered the room. i was smiling and taking in a fine head of silver hair and a great floral smock when she looked at me. squinted through dark rimmed glasses and said "so, what is it? i see you had a problem getting in here today."

she looked at me expectantly there was not a hint of awkward apology in her voice.

i inherently lost mine because i knew what she meant. she was not referring to the many physical or man-made barriers i had just overcome but was rather just seeing me--A BIG FAT DISABILITY!

i blinked back tears or you know, just the dust in my eye from all the construction and gave her the obvious. "Yes" i said, "i have trouble walking..." the rest she was going to have to pry out of me with her little pointy scraper hook!

in the end we both ended up smiling and having a nice conversation between rinse and spit. i left with this realization a hard lesson to learn for someone who strives to give so much...

realization: just because i have a SCI this does not mean i have to explain myself to anyone who asks or feels entitled to a good story.

okay, hope you all have a great night, morning, or finally heavy eyelids so you can get some sleep.

amanda

a hospital feels like home

alo12 — Fri, 07 Nov 2008 08:06:00 GMT

Tonight was a difficult night for me. I just returned from visiting a friend who is very sick and in the hospital. My friend Bill (aka my "Fishing Buddy" Bill) has stage four prostate cancer that has metastasized to different parts of his body. There is cancer in his stomach, his skull and the swelling of lymph nodes suggest "the cancer cells are coming!" to more precious organs. The wearied doctor might say it's only a matter of time now there's nothing more we can do...

i watched tonight as the well patienced nurse went about her nightly duties- drawing another vile of blood, checking Bill's menses?...can a 61 year old man ovulate? what ever the term, i asked and it meant basic life signs and mental clarity.

as sometimes happens in hospitals i began to relax and feel at home. an ICU unit is a place my body has been. it is a place through my work my mind knows.

as the nurse straightened Bill's arm to keep the IV machine from beeping and labeled each tube with the surgical tape my own skin began to crawl and itch with each desperate attempt at a scratch...

i was relieved when the nurse offered lotion to sooth away the burn. i knew the aloe isn't the medicinal cure promised. it's simply the attention to the need that cures.

later, as bill struggled to free himself from bondage...i remembered that too...what it feels like to have a will to freedom but no boat to carry it (sorry for the bad metaphor).

my spiritual strength was called upon and thankfully i could rest here. sorry this is so jumpy but watching bill's physical struggle my mind came to one conclusion. there is no bill here. is he the body i see before me? no. is he the mind of wandering thoughts i can no longer follow? no. where is Bill in these moments? he's simply in me.

I do not have a child but I am in a way a parent...

alo12 — Wed, 29 Oct 2008 08:59:00 GMT

Good Morning,

Nothing too witty or profound this morning (or perhaps at all SCI related...) BUT F.Y.I. I think I’ve uncovered the childless parent’s equivalent of nose-picking!

That is, I do not have a child but I am in a way a parent…to my cat. Mitty.

This weekend I believe I've discovered the nose-picking equivalent. I will let those of you who are parents be the judge…

"Mitty's Happy Feet Adventure"

Enter one Miss Mitty the Kitty into a room of lounging adults.

Mitty seeks out her person (i.e., me). Hops up into my lap to get her purr on and get a little lovin... There's that unmistakable feeling of pride-- "MY KITTY LIKES ME!" you turn to announce to the room with a smile...

This is when mitty like all good cats knows it's time to concentrate her efforts on more important things--finding the LARGEST belly in the room and workin’it with the unwavering resolve of a 4yr. old booger lover.

knead, knead, knead, KNEAD, KNEAD, KNEAD, KNEAD knead, knead...

there is laughter...which makes it worse. the large bellied lounger has now created the inflatable backyard balloon tent. Mitty gets all four limbs involved and marches around her new favorite toy…

I will never forget how Mitty looked over at me with the joy of a toddler who has just discovered trampoline legs…

"Whoa mom, did you know about this? This is sooo cool watch me! watch me. watch me do this!…and this..."

Again the very cool large belly person might save you with more laughter as you deflate…

(I’m not sure if it’s best to laugh or cry in these moments but…).

"Oh that’s okay!" the good-natured one might say.

KNEAD KNEAD KNEAD, KNEAD...KNEAD,KNEAD,KNEAD.

The laughter and intensity increases til you cannot get your little one, now clinging desperately, out of the tent. (MIIIIIIiitttty!!!)

My Buddha teacher Gil says at times like this your emotions are like competing wolves. Over the long run, the one that wins is going to be the wolf you feed. In moments like these, I experience frustration, at my perceived failure to control my cat, and joy/compassion for the similarities we all share. bodies are funny.

i usually try to go with the laugh and try to apologize.

bodies are funny, flesh wounds are not.

anyway,

Take Care,

Amanda
Mitty's handler

Team Reeve Marathon Recap

alo12 — Mon, 20 Oct 2008 19:54:00 GMT

Good Morning,

I am happy to report that I completed the Team Reeve All-Stars elliptithon in 4 hours! (which is exactly the amount of time I allotted for this event... : ). I feel good today just some lingering soreness in my posterior region and quads. : )

Below is the link to the video I made to give you a better idea of the day. It's also a kind of thank you to everyone for the support.

http://www.youtube.com/watch?v=TFdS-uvg2DU

Peace & Happy Monday,

A-lo/amanda

*the music is by Joan Armatrading. the runners are from the Columbus marathon which was also completed this weekend.

*mitty is still available for free consultation services : )

response to fear and overprotection

alo12 — Fri, 17 Oct 2008 21:25:00 GMT

Tomorrow, as I've mentioned, I'm running a marathon. For my "physically challenged" body this will be four hours on an elliptical machine. When I've shared this goal with others...I have gotten two general categories of responses. First, are those who are supportive and seem to fiercely jump behind my efforts. Second, and more often, I have received questioning looks. From family and friends I would describe the reaction as one of worry and concern..."Does she really need to be doing that? or "Isn't that a bit extreme?"

Athletically, I think I come across as a purposeful and confident sort. I have felt a little hurt by what can feel like that familiar shield of protection. I have lived with my SCI for 17yrs. I do not mean to sound like a petulant child but I'm quite confident that "I know my body!" I do not see my activity as extreme but as a way to express some remaining core part of my "physical self" that has always been there. Regardless of cause or purpose I would be running The Team Reeve All-Stars marathon tomorrow. It's just my choice or way to express my "self" with what I have left.

okay, I've said my peace for now. I will be back soon to update folks on the results.

A-lo

Running for 4 hrs. on an elliptical machine

alo12 — Mon, 13 Oct 2008 17:45:00 GMT

Good Morning,

This time next week I will be slathered in Icy Hot! Next Saturday, the 18th, I will be running my Team Reeve Marathon. I will be running for four hours* (hopefully straight) on an elliptical machine in support of SCI research.

I've got my iPod loaded, my magazines, and my six screens of football watching to do...

While I'm running,there will also be many other things I will be thinking about. Here are a few that I've chosen to focus on:

The CDRF (Christopher & Dana Reeve Foundation) estimates that 400,000 people are living with SCI. The major authority on SCI research estimates 250,000...hopefully, some of the money raised will help develop more reliable statistics.

(*regardless, this is at least 3 "Horseshoes" or "Big House" stadiums full of people)

"87.9% of all SCI patients are discharged from hospitals to private homes...5.6% are discharged to nursing homes." I will be thinking about those 5.6%.

The Estimated Life Costs of someone with my level of injury (but complete) is $1,729,754. The average yearly expenses is $56,905.

This is like having the stock market plummet and then neeeeeever recovering. No matter what Wall Street does.

77.8% of new SCI patients are male. I will especially be thinking of my newly injured sisters.

Thank you to everyone who has donated so far. It humbles me to see your generosity. If you would like to make a donation, you can do so at:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=59078&supid=222859771

Amanda

*why 4 hrs.? I checked out the Average Finish Time for all participants in last year's Columbus Marathon-4:19:24. I have never liked to think of myself as "average" (rrrrg) so I rounded down to 4:00:00.

we sing. we dance. or we make videos...

alo12 — Mon, 06 Oct 2008 20:31:00 GMT

Good Morning,

This past weekend I attended a family wedding. Unfortunately, I was tired and grumpy. I do not think people with mobility impairments should EVER have to wear fancy shoes...my loving but very "fashion friendly" family would argue otherwise so i conformed and perhaps deformed my feet. That is, I slipped on a pair of black flats. Shoes so lightly worn they have none of the dips and form hugging grooves so nobly gained in my Nikes. To anyone who would listen to me at the church and reception I freely announced "I cannot walk in these!" and "my feet hurt!" It all became very ugly when the DJ cued up the father-daughter dance. As my dance loving fathered landed at my side, I looked at him with all the love of a sour grape and informed him "I've developed a blister. I cannot dance."

BUT, I decided what I can still do is appoint myself head videographer! Here's some footage of the event I hope folks will enjoy.

Even when we can't dance there's a spirit that moves inside.

http://homepage.mac.com/amv12/iMovieTheater50.html

deflopping my creative muscle

alo12 — Mon, 29 Sep 2008 04:02:00 GMT

I was having dinner with my friend Martine, last week. Martine is a spirited, middle-aged woman from Belgium. As the conversation turned to the larger social sphere, I learned a new word. Martine shared with me how she had nursed her ailing mother back to health this summer and that things were okay because in Europe the (social) system is more "deflopped."

"deflopped" sounded bad but the context suggested that it was good.

"Martine? Did you just say deflopped?"

She turned, delighted but confused by my question. "Deflopped? No, eh..." she laughed, "developed (de ve lop pay). In French, we say developee..."

So let me just say this evening, the word is still deflopped.

1. deflopped- (adj. de flopped) the meaning is negative. It means miserable, without hope.

e.g. In America, the economic system is deflopped. The social system is pretty deflopped too.

i guess this leaves the positive alternative...flopped.

2. flopped- (adj. flopped) full of promise, great optimism and hope.

e.g., I like Barack Obama because he's flopped. or...when i turned 21 my muscles flopped (okay, it does not work in all situations).

my point, uh, maybe?

I like new words. I've been deflopping my creative muscle lately and would like to offer up some neologisms (yes, i had to look that word up).

According to the on-line American Dictionary, neologisms are:

1. A new word, expression, or usage.
2. The creation or use of new words or senses.

What I've come up with are

Neurological neologisms- words from my recent airport travel

McSquishy- (Mick Squishy) the taxi driver who quickly manages to get the wheelchair into the trunk (he has to squishy something to get the tires in)

Stuffication- the feeling you get when trapped next to a very chatty Danish woman on a business trip

Colostophobia- what you experience when she shares a little too much after her second glass of wine

Tipping- what you are NOT supposed to do in your sporty wheelchair but rather the money you give to the transport people

Todlerizing- when security refers to all of your travel companions or friends as your mother...

Dope Pushers- usually young African American men (i'm just saying...these are the guys who get these jobs. the Biffs and Bradley's of the world are carrying bags at the Club). they are strong and full of too much energy. it comes out in ways such as...giving you, in the wheelchair, one GIIIIIANT PUSH...standing back, and then running after you to catch up before you stop and/or hit something...you know like a person, or a wall

okay, and a few more from the grocery store parking lot

Ass halted- when you get your "ass halted" by a stranger usually well-meaning who unapologetically grabs, pats, pulls or pokes you in the name of God

BooBooism- closely related to toddlerizing this is when you ask someone with a SCI when is it going to get better? (hint: it's probably not)

Gohomeopathetic medicine- a phrase i would like to coin for anyone who wants to stick mudpacks on me

Hoprah- actually her name was Cathy but she had Hope and the self-assured vision of Oprah

Shamens- to me the equivalent of the biblical lepers. someone to be stayed away from but loved...people who view a disability or SCI as a shame and then promise you healing through prayer...and amens!

noseyology- the branch of human interest that seeks to define and understand disabled people in public.

I find it okay when someone's doing noseyological reasearch one-on-one or at a in-private level but in the parking lot at Krogers it's off-putting.

When someone starts a conversation with

"How are you? What is it that you have…MS? Do you have CP?"

I know they are doing noseyological research.

I'd like to end with an example story to sum up. to see if you can identify or apply some of these terms BUT...I think this is probably enough "entercation" (entertainment and education)

Take care all.

amanda

17 Good Things About SCI

alo12 — Wed, 24 Sep 2008 18:05:00 GMT

I sent this as an e-mail to family and friends some time ago. As yet a further introduction to who I am, I thought I'd post it here. I'd love to hear if you have anything you'd add to the list : )

Good Morning,

Last week I had a Thoughtful Thursday...

That date (Jan. 3) marked 17 yrs. since SCI (spinal cord injury)…

With my undying love for the physical…running, jumping, climbing, sliding, diving, log rolling etc. I can honestly say if I had my choice I would still like to give it back.

…but God stamped NO RETURNS or yelled NO TAP-BACKS after this one.

(I’m even willing to stand in the customer service line after x- mas!!!...indefinitely)

BUT today I can also see there is much good. I've come up with a list.

17 Good Things About SCI

1. I get to meet interesting people

2. I get to use jargon or “lingo”

3. I have interesting scars that suggest character

4. I always wear tennis shoes

5. I get to watch TV drama and laugh. Soap opera paralysis..."after Ben operated on his own spinal cord. He faked his paralysis to keep Caroline..."

6. I get to judge all actors' performances for accurate limps (Martin on Frasier…not very good)

7. In general, The Salvation Army ringers ding at me less

8. I have options when it comes to chairs—most people like for disabled people to sit

9. I can honk my horn for service at the gas station...although I've never done this

10. I leave interesting tracks in the snow

11. I have an “in” with Gloria Estefan! Come on shake that body baby do the Conga! (...tour bus accident)

12. I would be a good parent. I have no problems talking poop.

13. At the grocery, I can push my cart through the wrong set of automatic doors (because they’re closer)…and not raise a fuss

14. I get a big sense of accomplishment out of smaller things; e.g., I have been on "Arctic expeditions" cleaning off my car with crampons and ice pick! (cheap plastic ice scrapper and tennis shoes)

15. Clear vision-I can spot an a-hole a mile away!

16. Perfect way to hang out a little longer with people you like; SCI brings some really good people into your life…e.g., people who don’t mind waiting with you and being the last to leave a crowded movie theater.

17. I fall asleep fast and dream big

okay, Happy Monday.

--Amanda C5-C6, incomplete quad

Home Tour...

alo12 — Thu, 18 Sep 2008 18:21:00 GMT

http://homepage.mac.com/amv12/iMovieTheater49.html

p.s. for those really into video quality. you might enjoy this too. 10min. of your life you will not get back but there's a good face-plant into the blinds in there...

power up!

alo12 — Thu, 18 Sep 2008 18:19:00 GMT

The power returned late last night! Funny, you could hear people hooting and hollering in applause throughout the entire apartment complex...

If I get my act together this evening, I should have a fun video for folks to check out.

Take Care,

Amanda

experiencing technical difficulties

alo12 — Tue, 16 Sep 2008 20:45:00 GMT

Hi there.

If you are starting to check my blog with any regularity, I'd just like to ask for your patience. Columbus, OH, where I live, was hit with a very big windstorm this weekend. Many places have been without power for several days and at my apartment it looks like this will be the case for the rest of the week. My ability to make and check for posts and comments is a bit compromised but I'll do my best.

Take care,

Amanda

*we do have power here at the office