In need of a compass

Or perhaps "In need of the ability to read a compass". Or more aptly, "In need of the motivation to get off my duff and move in the direction the compass is pointing".

A friend once offered me the opportunity to paint his truck. Anything would go -- his truck was one beat up specimen of transportation. No doubt, paint would have helped it stay in one piece a little bit longer.

I thought and thought and thought. Which meant I delayed and delayed and delayed. At some point he confronted me.

"What, are you afraid you're going to do it wrong?"

That hit me pretty hard. Unfortunately, it also hit me a little too late. By the time I gathered up my equipment, my friend had taken off for a pretty extensive trip.

Is it possible to say you've learned a lesson if your actions since the moment of learning don't demonstrate your new knowledge? In theory I know that life isn't about getting it right the first time. When presented with choices, I don't believe only one of the options is the right one. I love this quote of F. Scott Fitzgerald

“Vitality shows in not only the ability to persist but the ability to start over.”

but feel I am often holding some part of myself back -- tethered to a safe base -- to avoid missing big or having to start over from scratch. It's not intentional. It's not intentional!

I'm beginning to realize I don't have enough imagination to plan my next big adventure. I think I need to just start and see where the road, when it rises to meet me, leads.

Liminality

Today is Christian's graduation ceremony. This calls to mind a speech he gave a couple of years ago about the stacked and recursive nature of liminality. "Stacked" due to the fact that waiting at the finish line of one set of preliminal, liminal, and postliminal phases is a completely new set. "Recursive" because any individual phase could also contain a preliminal, liminal, and postliminal phase.

He used college to explain:

• preliminal -- separating yourself from your every day, deciding to embark
  
• liminal -- taking classes, learning
  
• postliminal -- graduating, integrating back into the world as a changed person

The graduation ceremony, part of the of the postliminal phase of going to college can also be dissected into three phases:

• preliminal -- separating yourself from your every day, donning a gown
  
• liminal -- walking, receiving your diploma
  
• postliminal -- being introduced to the world as a graduate
  

Today was a great example.

Open mindedness

I proudly labeled myself open minded at an early age. As with many of my young peers, each passing year brought new knowledge and understanding. Inevitably, this new vantage would turn my definition of open minded on its head. I would smugly comment on my recently younger self, "Ha! Back then I only thought I was open minded" confidently adding, "But now ... now I actually am."

Rinse. Lather. And repeat.

Although I'm often not intelligent enough to avoid entering into patterns, I can sometimes recognize the patterns I fall into. It took some time for me to recognize this one, and now I know -- I like to think of myself as open minded, but I'm merely a work in progress.

I've come to believe that one's level of open mindedness can be measured by the nature and breadth of stories that cross one's path. As an adult, I find individuals sharing their life beliefs with what appears to be little reservation. However, I have no doubt that what people will be willing to share with me 10 years from now will help me look back and understand how much people are currently holding back.

Stranger to a stranger?

When I walk out into the world among strangers I forget I am an unknown quantity. Although I know how to wear my heart on my sleeve, I don't know how to wear my history or my story.

For one thing, something about the way I look elicits a story about me out of people -- but it's a story that has nothing to do with me. Instead, it has to do with some "exotic" culture that I have no knowledge of.

By looking at me, there's no way one could tell what my relationship with my parents is like. Nor could one tell that I am educated, have a fondness for double entendre, believe at the core people are good, or a number of other things about me.

Despite this, for some reason, I forget that I am just as much a stranger to a stranger as they are to me.

Thank you, Michelle!

Great news -- My mother once again has access to treatment!!

After many months of trying to traverse the confusing world of pharmaceuticals, health care, insurance, and patient advocacy I was able to connect with Nancy Falkman, a Program Director at AccessMed. She, in turn, connected me with Michelle Mainor, a CSL Behring Programs counselor who has worked diligently on my family's behalf. Since July of 2007, Michelle has tried approach after approach demonstrating a great sensitivity to my mother's situation and a determination to help.

Many, many thanks to Michelle for her patience and dedication.

Economics 101

Christian and I went for a bike ride today. Along the way, we stopped at a nearby park where I overheard a father talking to his little boy. When the boy ignored his father's request to not play (stop playing) with a little plastic wagon another little boy had parked behind me, his father responded with:

"Hmm... You want to touch everyone else's things, but you don't want anyone to touch yours. That's quite an economy, son."

Zazzle-icious

I recently created an account on Zazzle.com. Similar to cafe press, this site enables you to upload images and create products out of them. Different than cafe press, this site allows you to tweak modify image size, change image placement, and add text.

I'm really enjoying myself. Here are a few examples of products I've created so far:




zazzle currently has a few glitches with its interface, but I get the impression they will be around long enough to correct these. We'll see. In the meantime, visit my "gallery" :)!

My mom and IVIG

My mother
My mother's name is Angelica Ramirez Zuniga. To quote my father, "She doesn't have a bad bone in her body." I completely agree.

Her Illness
Her symptoms began to appear toward the end of my senior year of high school (May of 1992) and grew progressively worse through the summer. My first visit home from college (for Christmas) consisted of a three hour drive to a hospital in San Antonio with my mother in the back seat. I can't find the words to describe the experience-- I imagine it might be akin to sitting in a car with a woman who is giving birth. Only in this case, we did not know why my mother was in so much pain nor did we know if there would ever be an end to it. We were helpless as we watched her convulse from the torture of her muscle spasms, beads of sweat soaking through her clothes.

Doctors had no idea what was wrong with her. Specialists of all sorts worked to treat her symptoms-- muscles cramping so strongly that her knee had fractured, an inability to bend her limbs on demand, pain...

Although the treatment her doctors were able to fashion together reduced the pain she experienced, it was not able to restore any independence. My mother could not bathe herself, take herself to the restroom, or even turn herself in bed.

After my Freshman finals (June 1993), I got a call from my father. "Mija-- You have to come home quick." My mother was in the hospital and had been given only a 10-12% chance of recovery. He related what the doctors had said-- One of the medications that had been prescribed to handle her symptoms required liver function monitoring; Unfortunately, my parents had not been told and my mother's liver had begun to deteriorate and was dangerously close to failing.
With a removal of the medication, great hospital care, and liver transplant teams at the ready, my mother's own liver stopped deteriorating and fully recovered. But this meant that treating the symptoms as completely separate entities was no longer an option.

In 1997, a local clinic began hosting a neurologist who would visit our small home town a few days out of the week. Although this condition is very rare and he had never seen it before, he was able to diagnose my mother and we finally had a name to work with-- Stiff Man Syndrome.

Her diagnosis, Stiff Man Syndrome
To quote the National Institute of Neurological Disorders and Stroke,

Stiff Man Syndrome (Stiff Person Syndrome) is a rare neurological disorder ... that is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress which can set off muscle spasms.

Newly armed with a correct diagnosis, we were able to find a neurologist who had experience with her illness. Although the doctor we found lives and works 7 hours away from my parents' home town, the visits made to her office have been worth the long trek.

Her Treatment, IVIg
The treatment my mother receives is called Immunotherapy. According to NINDS,

An immunologic therapy, intravenous immunoglobulin (IVIg), administered to patients suffering from stiff person syndrome (SPS), provides dramatic relief from disabling symptoms, according to a study appearing in the December 27, 2001, issue of The New England Journal of Medicine .

Over time, the treatments administered have given my mother a new lease on life; The improvements brought about have been substantial. Her balance has improved and her stiffness has waned more and more each year. Now she has the ability to participate in many regular daily activities that many of us take for granted. I'm sure you can imagine how grateful she is to again have the ability to dress without assistance, to use the ladies facilities in complete privacy, to bend her legs on demand, .... Can you imagine the joy she experienced recently, when for the first time in 15 years, she was able to drive again? (Pictured above is a "first in 15 years" I was able to enjoy with her over a summer visit in 2006. I still get sappy thinking about excited and happy she was to be able to join me for a simple swim.)

Her Predicament, MediCare
In 2005, the Centers for Medicare & Medicaid Services (CMS) lowered the payment rate for IVIg. This new payment rate makes it financially prohibitive for health care providers to administer IVIg since the costs for purchasing IVIg exceed what CMS will reimburse.

Since it is illegal for a health care provider that accepts MediCare to charge more for a treatment than what CMS has agreed to pay, there is no way that a health care provider can recoup the uncovered costs associated with treating MediCare IVIg patients. Understandably as a result, many treatment centers that administer IVIg will not accept MediCare.

On December 1st of 2007, my mother will turn 65. Whether she wants it or not, MediCare will become her primary insurance provider. IVIg transfusion centers that accept her current insurance will not (can not) accept MediCare.

Any CMS cost savings generated by patients not having access to IVIg treatment would transform into different and possibly more costs down the road. For example, anyone in my mother's position could need up to 24-hour assistance. And who's to know the health toll that the physical requirements of assisting another and the emotional strain involved in watching a loved one suffer can have on one's life partner?

Personally -- after so many years of witnessing my mother's progressive improvement, I cannot stomach the idea of her losing access to this treatment. I am worried not only for the health of my mother, but for my entire family.

A Possible Solution, petition to Congress
The Immune Deficiency Foundation (IDF) is advocating for people who require access to IVIg. According to a recent release, IDF has so far been able to temporarily stop further reductions for IVIg MediCare payments.

IDF (and now I) request that if you care about patients receiving required treatment, please write to your representative about this issue. IDF has put together a site to facilitate this process-- with a few clicks, you can find your representatives and generate a letter to send either via e-mail or snail mail.

Thank you for taking the time to read this. -elsa

Anthropomorphizing

I read blink not too long ago. In it was a reference to an experiment conducted at Yale by a Robert T. Schultz, where it was found that facial recognition is impaired in autism.

The study used functional magnetic resonance imagery (FMRI) to determine what parts of partipants' brains were used when distinguishing between two faces and distinguishing between two objects.

The findings identified an interesting difference between non-autistic and autistic participants.

• When a non-austic participant tried to determine if two images were of the same face or of two different faces, they utilized a part of their brain called the fusiform gyrus. When they performed the same task on two objects, they used a different part of their brain-- the inferior temporal gyrus.
• One could not tell which of the two tasks an autistic participant was performing by looking at their brain. In both cases, autistic participants utilized the part of their brain that the non-autistic participants used for objects alone, the inferior temporal gyrus.

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Recently, I've been thinking more about this experiment.

On a return home a few weeks ago, Christian and I noticed the front door to our apartment was wide open. As we cautiously made our way in and down the hall, I caught sight of what appeared to be a little critter scuttling into our living room. I hadn't had time to determine what the little critter was, but I had been able to see that it was four legged and mostly black.

Although we were nervous that the neighborhood skunk we'd been admiring had made its way into our living space, we cautiously turned on the light and hoped for the best.

To our surprise, crouching in the middle of the room was a beautiful black cat.

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After a brief moment, the cat ran out of the room, past us, to the now closed door. Upon seeing the door was shut, he turned around -- it appeared he was about to run back to where we'd found him. I blocked the entrance to the living room and instructed Christian to open the front door and stand outside so there would be nothing between the cat and his way out.

Since the cat had been watching me the whole time, he hadn't see that the previously closed front door was open once again. He stood there, frozen, looking straight up at me. After what seemed like a minute, he let out this pitiful yowl. I took a slow step toward him which was enough to get him to turn around, see his escape route, and make a run for it.

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Why would this incident conjur up thoughts of the blink-referenced experiment?

Because I've been thinking about the way I think about the experience. I remember the expression on the poor cat's face, his whole demeanor in response to getting "caught", to being in an uncomfortable position. Seeing the predicament he was in, my heart went out to him...

Normally I would just chalk this up to my tendency to anthropomorphize. But what if it's that some of us are "autistic" when it comes to relating to animals, and some of us aren't? In other words, what if when interpreting animal behavior some people are in one mode (object-interpreting) while others are in another (human-interpreting)?

Would this help explain why some people are animal lovers and others aren't? Or why some people have a natural tendency to attribute human characteristics to non-human beings ? Or why I grew up with every member of my family rolling their eyes whenever I enthusiastically raved about my awesome, awesome pet dog? :)

Driving glasses

I propose that SUV's be made entirely of glass.

Although the driveway on which I park my car is not a "blind drive" by design, I've found that it can be easily modified into one with the addition of SUV's.

An SUV flanking each side of the exit makes it literally impossible for an egressor to view traffic, coming or going. The car visibility shadow cast by an SUV is so wide that up to three cars can approach the poor driver's trunk in the time it may take him to clear it.

Any sort of translucence could solve my problem. I only propose glass because the additional trait of frailty may provide some extra benefits:

1. Less horn honking. "He who lives in a glass house shouldn't throw stones." I imagine the same notion applies to cars. For one thing, you'd be a dunce to upset somebody when you're only one fender bender away from taking the bus. Also, conscious or not, I believe some people behave more aggressively when they feel "anonymous"-- something hard to do when you're riding around exposed, looking like Wonder Woman in her invisible jet.
2. Less aggressive driving. See point 1.