May 26, 2009



Blended Senses

December 2000

“I have a headache,” I tell her. She is walking
away now and I’m trying to open my eyes. Why are we outside? The sun is in my eyes, damn it... drenching everything in red-orange blur. All I can make out are the silhouettes of people standing around me. Oh, here she comes. “No. Now. Something now” I say. I can’t wait for pills to work. The silhouettes start getting jittery. Some have their arms folded across their chests, others are gesturing wildly. One is coming closer.
“Do you know me?”
Of course I know him… the doctor with the red-orange hair. Wow, his sweater matches his hair. Nice, I try to say, makes you look heavenly...


I am told I spent the next few days in ICU in a coma-like state. I finally woke up, still in pain. I had been transferred to the Red Room. The walls were a deep burgundy and the nurses wore head-to-toe maroon complete with matching face masks. I was confused. In Star Trek, they only don the reds for surgery. Had I been in surgery?

Actually, I was in quarantine until they figured out what sort of meningitis I had. All I remember is that everything was so red.

Months later, I was telling someone what I remembered from the Red Room.
“What red room?” he asked.
It was only after lots of arguing and phone calls that I finally conceded that room may not have been red after all. As it turned out, neither the first sunshiny room nor the doctor had been red-orange and the Red Room was actually white. So why did I see them in these colors? Had I gone crazy?


I wasn’t really surprised. This was not the first time I’ve seen things differently than some people. Actually, one researcher says that as many as 1 in 23 people may have some form of synesthesia. Like me, these people may experience any variety of combined sensory perceptions. The most common form is colored letters and numbers in which a person involuntarily perceives letters and numbers (and other graphemes) to have color. For instance, where you see this letter "A" as being black, a color synesthete will see it overlaid with a different color. One synesthete might see it as orange, another might see it as blue. For synesthetes, this perception is very real to them, just as the black letters you are reading now are very real to you.

Other forms of synesthesia include having the perceptions of color (and/or shapes or texture) through hearing, touching or tasting. For example, when Sean Day, a colored-hearing synesthete, hears music he will perceive various colors in his visual field.

Another interesting form is lexical-gustatory*, a type of synesthesia in which words evoke taste in the mouth. Just like with most forms of synesthesia, people with this condition have in the past been dismissed as attention-seeking or hallucinating. As one of synesthesia's ambassadors to the world, James Wannerton has subjected himself to countless hours of research and brain scans (and film crews) to educate both academia and the general public. People don't "suffer" from synesthesia and it isn't a disorder. It is simply the way some people perceive the world.

There are about 5 common types but in all there have been reported about 61 subtypes of synesthesia. Here are a few examples from a list compiled by Sean Day:

  • General Sounds --> Colors
  • Phenomes --> Colors
  • Tastes --> Colors
  • Personalities --> Colors
  • Grapheme Personification
  • Object Personification
  • Emotion --> Flavor
  • Smells --> Sound
  • Pain --> Sound
  • Sound --> Flavor

When I was in pain and percieving everything around me to be drenched in color, I was experiencing "Pain --> Color" synesthesia. But it is not the only type I have.


I first realized there was something different when I was about six years old. From the backseat of the family car, I was complaining about how it was difficult to keep up with days sometimes because once you got to Wednesday everything flipped around the other way. In my mind, Monday starts out with Tuesday to its right, and with Wednesday to its right. But once we're in Wednesday, the whole line flips around and now Wednesday presents with Thursday to its left, and Friday to its left, and so on. It's actually more complicated than that, but that's the easiest way to describe it.
(Above: Monday, dissipating, Tuesday and Wednesday follow)
My dad thought this was intriguing and asked me questions about how I thought of clock time. I remember him saying something like "wow, she has such a fascinating concept of time and space abstracts" which I remember to this day because it sounded so Carl Sagan-ey. (One of my favorite memories was sitting with Dad watching Cosmos on PBS)

My mom's response was equally memorable: "I think she may be retarded."

(Yes, that's the word she used. I mention that because, like so many others who have had their perceptions questioned, it embarrassed me -- I immediately shut up and never mentioned it to her again. )

But the difficulties I was describing were not limited to days of the week. I have this same trouble with numbers. 1 starts out with the rest of the line going off to its right, but occasionally when I get to a certain number, the view flips, turns, tilts, and so on. Many times, positive numbers continue off to the left, or straight up, or back to the right. As you might imagine, this complicates learning mathematics just a bit.

But the biggest problem I have with doing figures is that not all my numbers get along with each other. Almost all the numbers detest 2's bitchy disposition, while 9's Spock-like steadiness can mediate any situation. Certain numbers just don't like having to stand next to others, and will fidget just like first graders being asked to stand in line and wait -- eventually, they wander off.

This assignment of personality and gender to letters and numbers is called Ordinal Linguistic Personification, in which ordered sequences, such as
ordinal numbers, days, months and letters are associated with personalities. Similarly, with object personification, everything that can be perceived gets involuntarily attached to it some sort of personification. It may be a gender and personality or it may get attached to it a color that represents that. Numbers, letters, months, grass, trees, furniture, clothes, books, even people. Even my own body parts have this sort of personification -- I recall as a small kid acting out "plays" in the bathtub with my fingers and toes, as each was (and still is) a different character.

My synesthesia actually isn't as pervasive as it might sound. I've always had it, so I don't know any other way. It does sometimes dictate my emotions and decisions however. I develop almost obsessive fondness for some people because I like their color -- I just want to be around them all the time! Conversely, I regret to say I may not like some individuals based purely on the same thing. Recently, I entered a room that had all orange (yuck!) desk chairs and I desperately wished I could turn around and run!

Most synesthetes have remarkable memories, as this gift functions as a natural mnemonic. Unfortunately in some cases this isn't so for me, especially when having to learn new concepts. If the thing or concept has no existing "relative" it takes me while to figure it all out. But typically, because of these strong emotional/personification and in particular the color associations, synesthetes have remarkable memory. I don't know why I don't -- maybe all those drugs I did in the 60s? (Relax, I wasn't actually alive in the 60's)

Which brings me to another point: synesthesia is not the result of psychedelic drug use. It is constant, involuntary, and has been a part of the individual since they can remember.
It also tends to run in families, so researchers across the globe are trying to tease out the gene responsible. Hopefully, through this type of research we will learn what gives some individuals these unique perceptions and, as with any research, learn more about the mysteries of the human brain as well.


*Gustation involves activation of cranial nerves to process sensory input from the tongue in the form of sweet, salty, bitter, etc. But this only plays a small part in the perception of flavor. Flavor is the integration of gustation and olfaction and somatosensation.

Flavor synesthesia does not involve the same neural pathways. In other words, when James Wannerton hears the word "London," the mashed potato taste he experiences occurs in the absence of molecules that trigger olfaction, and without the activation of the sensory portions of the cranial nerves typically associated with gustation.


More about synesthesia:

Sean Day and David Eagleman:

Richard Cytowic on Synesthesia:

May 12, 2009

Mother's Day and The Defenestration of Folk Music

(Mom... young, as I remember her)

The following are excerpts from something I wrote in 2005, seven months before Mom passed away. (These are only highlights, the whole thing was excruciatingly long)


On rainy or boring days, or just anytime Mom got tired of me, she would send me to my room with an armful of her albums. Yes, I mean the round, black, vinyl kind, believe it or not. Carly Simon, Joni Mitchell, Phoebe Snow and others - they were my surrogate mothers.
When Mom was mad at Dad, or one of us kids, or just life, she would put on some Carly Simon (or the like) and ramp up the volume. For the next 4-5 minutes we were all her quiet, trembling captives while a husky female voice belted out despair and anguish on Mom’s behalf. This was her method for expressing all sorts of feelings and ideas. Yes, music was her medium.
When she loaded me up with an armful of albums she wasn’t just giving me something to do, she was giving me her toolbox, her art supplies you could say. I'd be alone for hours in my pale yellow room, lying on the floor with my feet propped up against the wall. I'd stare at the ceiling or into nothing at all while the smooth voices and mellow harmonies carried me far away from Mom's bi-polar hell. It was my favorite place to be, and a few years ago when I was instructed to find a "peaceful place" to ease birthing pains, I thought about lying there in my yellow room on my back with my hands behind my head and my feet in the air, keeping beat with my feet to Joni Mitchell's guitar strums.
My mom had moods that could shift faster than Alabama weather. And any trigger would do. And sometimes there seemed to be none at all, like the day I watched my record player sail out my second-story window, followed by Joni Mitchell, then Linda Ronstadt, then Phoebe Snow. After she left I looked out to see glass and plastic and machine parts all over the driveway. The defenestration of folk music. But if her fleeting intention was to take away the music, she was too late. It was mine. It was in me, woven around my heart like the very vessels that supply it life.
I only recently came to understand that all the insults I bore and all the projectiles I avoided and all the ear-bursting music and screaming really had nothing to do with me. She didn’t hate me. She hated her illness. I think she would rage until her energy was spent, only to discover she still had more blazing anger inside, with no way to let it out or to be consoled. And when Carly Simon or Joni Mitchell could neither say it for her, nor give her solace, her frustration turned into everyone's catastrophe.
When I sit alone in the quiet and think about those times, I don't see a mother expressing disdain for her child, but a woman who fiercely wished she could be more. And it is only then, that after 30 years of not really knowing this person as a mother, I can understand this person as a woman. To quote her beloved Joni Mitchell: “every picture has its shadows, and it has some source of light.” Without a good portion of each we have no depth.
It has not been perfect, and it has not been ideal, but it’s my life. It is made up of beautiful song writers, and beautiful song lovers. I know my mom loved me because she gave me music. And I can give it back to her when I sit by her bedside and sing to her. She stares at the ceiling or into nothing at all while my voice carries her far away from bedridden hell. Maybe deep down *she* is still in there, dancing and humming along and knowing that this tune is my way of saying, “thanks Mom, I love you too.”

May 9, 2009

Charlotte's Heart

Some of you have asked about Charlotte's surgery.
She had open heart surgery when she was three months old to correct Tetralogy of Fallot. A slideshow of that is at the bottom of this blog. _________________

TOF happens to 5 out of every 10,000 babies. Heart defects of any sort are fairly common in individuals with Down syndrome, like Charlotte.

It is four (tetra means four) related defects:

1) Pulmonary artery stenosis: the artery taking blood to the lungs to go fetch more oxygen is narrow and thus...
2) Hypertrophy of the right ventricle: the right ventricle wall gets thicker because it has to work harder to get the blood through the narrowed pulmonary artery.
3) VSD- ventricular septal defect: a hole in the septum (the wall) between the two ventricles and thus...
4) Overriding aorta: because the ventral septum is faulty, the aorta kind of fumbles over it. All this allows oxygen-poor blood to leak through and get mixed with oxygenated blood. Leaning the mixture, so to speak.

Charlotte was considered a "pink Tet" baby as opposed to a "blue Tet" because her defects were such that she still got enough oxygenated blood to keep her "pink." Even still, during one clinic visit, the cardiologist decided it was time to get her fixed up. So, about a week later we found ourselves at UAB awaiting the famous Dr. James Kirklin, son of the famous Dr. John Kirklin of Kirklin Clinic fame, to perform her surgery. I have to insert here that I have the greatest respect for this man and will forever be grateful for the kindness he showed me. He mended Charlotte beautifully and although she bears a scar, it is minimal compared to others I have seen.

It was also discovered during surgery that she had a PDA -- patent ductus arteriosus. The blood vessel between the aorta and the pulmonary artery usually closes shortly after birth... unless it doesn't and then it's called patent (open). About 3000 babies in the US are born each year with a PDA. It can close later on its own, or may require surgical repair. Charlotte's leaks so very little now that we're not going to worry anymore.

As a result of having to fiddle with such a small organ, Charlotte now has AV heart block. Her two sinus nodes that tell the heart when to do its pumping are not in agreement, so the result is a lower overall heart rate. I am told that this sort of iatrogenic heart block generally is not a huge concern (??), though she will eventually require a pacemaker, but that's down the road yet.

For now, she's happy and healthy and growing more beautiful each day.

May 8, 2009


Charlotte and I braved the humid Alabama weather to get her periodic pump check.

First she got radiated and electrographerated.

Had some play time with her friend Kianna.

... and later, a familiar face showed up!

Doctor Colvin listened...

...and looked

...and then it was off to get hooked to the Holter.

And then she's done for another year!
(and you know this one can't miss a photo op)

The Holter monitor records heart activity while she's wearing it. After 24 hours, we take it off and send it in to be analyzed. To help the analyzer, we keep a log of her activities that could explain any unusual readings.

Charlotte's log read something like this:
10:45 - start monitor
11:00-11:15 - nap
12ish-12:30 - lunch
1:20- 2:00 - climbing/falling/climbing/falling/climbing/falling...etc.
2:30 - heard beeping sound, found she had unpacked monitor and was pushing buttons, hope that doesn't matter
2:30 - accidentally scared the crap out of her when I discovered her doing this
2:45- napping bouncing on bed
2:50 - crying
2:55 - ticked off
3:00 - really pissed
3:10-4:10 nap
Anyway, it was a good visit with nothing but good news. The PDA is all but closed and not something we're going to even think about anymore. She will not need pacing at all for the following year and maybe not even for two or three more. She's strong and healthy!

May 5, 2009


Malkin scapegoats immigrants for flu spreadApril 28: Michelle Malkin claims that the spread of contagious disease is a result of "uncontrolled immigration." Is the Republican echo chamber stirring the American melting pot with its classic recipe of hate and fear? Margaret Carlson of Bloomberg News joins "Countdown."


I don't even have anything to add. It's just... sad.

May 3, 2009

Something to ponder

I begrudgingly agreed to take a particular personality assessment for, er, "research purposes." Now, I give as much credence to some personality assessments as I do Facebook quizzes that tell you which eukaryotic organelle you are. I am a ribosome, by the way. I get along well with the endoplasmic reticulum. Anyway, my point is that the information from these assessments doesn’t usually tell you anything you didn't already know but can be a fun something to do. But, ok, I will concede some actually do have merit and practical applications. I kind of have to say this. Afterall...

Years ago I was certificated as a Human Behavior Consultant by a company out of Atlanta using the
DISC model . (I never utilized it in the way it was intended which was to conduct seminars in school and office settings) This model is basically the same as the others that are the more developed form of the Hippocrates' humoral theory.
What? You didn't really think I'd leave out a history lesson, did you?

Ancient Greek popular belief was that there are four basic substances within us: yellow bile, black bile, blood and phlegm, and that having this one or that out of balance could make you choleric, melancholic, sanguine, or phlegmatic. Ok, actually they presumed having one out of balance would make you sick, but they applied it to temperament as well. Hippocrates gets credit for starting this nasty rumour (even though he may have only been perpetuating it) which actually persisted (along with other "medical" gems like bloodletting) up until the establishment of scientific medicine in the late 19th/early 20th century. But there's a topic for another day.

In India, ayurvedic tradition tells that there are basic elements to life that can be grouped into three "substances." When one of the three substances is dominate you have a body type and it is believed that this
dosha dictates your temperament. It is also important to note that like many cultures, the ayurvedic teaches that life is the manifestation of the spiritual. Similarly, Christian writers posit there is a higher connection as well. If you want to transform your temperament, some say, you need only to appeal to the heavens. And only then will you find your true purpose, so they say.

So the point of all this humors/elements, mind/body, personality/temperament stuff is to help us get into healthy balance so we can better understand ourselves and each other, and in the end, all just get along, right?

So, I did it. And by the way, I have no intention of telling anyone what my cutesie letter combination turned out to be. This information in the wrong hands... right? heh heh. Anyway, there's something creepy about being able to plug variables into an formula that then pops out a completely intrusive report that reads like field notes from someone that's just spent the last year shadowing me. It invalidates my uniqueness! ~gasp!~ It countermands my perception of individuality! What happened to experience being the fire that forges? Mr. "Researcher" explained to me that "this can be significant but not as much as we used to think" though he has thus far refused to point me to such research to support this.
I mean, come on, it's not that simple, is it, Mr. Researcher? Methinks Mr. Researcher didn't think this answer through.

On the surface, it would seem this assessment reduces me to a predictable system of algorithms. At the very worst, it points out in tortuous detail what I have the potential to be, were it not for my miserable, inherent flaws that prevent it. But now someone also wants to tell me I would have ended up this way even without all those "character building" experiences? If it were true loads of cognitive psychologists would be out of a job, right. If the last decade had little to do with who I innately am (in which case, I want a life refund!), then by that logic the future offers little hope for change as well. That's awfully dismal! And highly illogical, Captain. Continuously shaping yourself is life's most worthy endeavor, afterall.

My temperament may try to dictate what choice I make, but in turn the decision can hone my temperament. I may have an inherent disposition to be this way or that, but all along the way I have choices as to how much I will allow it to dominate me. And the choices I've made thus far haven't all been for nothing. Otherwise, everything I am is just the result of one of sixteen ways the dice might have landed. Then again, maybe this grumpiness I had attributed to not getting enough sleep really has to do with having too much black bile, or yellow bile, or blood. Time to get out the leeches, maybe?

Hmm. Ponder this more, I must.

May 2, 2009


The media would have us all trembling in fear of the "pandemic of the century." This guy says don't sweat it, but don't pet it either. And especially don't make out with it.

Dr. Rick Kilgore, a drug developer and researcher in Birmingham and general aviation pilot, has agreed to let me post the email in which he replies to the concern that the flu may have an impact on Civil Air Patrol operations:

I am currently in NYC at a Infectious Disease Meeting. I am one of those responsibile for the development and testing of many of the current vaccines that Sanofi-Pasteur Pharmaceuticals makes through clinical trials. We are here meeting on the development of H5N1 (avian or bird flu) that we will be testing this summer. But we have discussed the H1N1 flu that is currently showing signs of illness in Mexico and a few individuals who recently vacationed in Mexico or were there on business. There are plans to add to the influenza vaccine in the Fall possibly as a tetervalent vaccine rather than a trivalent vaccine. There will be nothing done in the interim since this H1N1 flu is treatable by either a standard dose of either Tamiflu or Relenza. If identified family members or coworkers or those suspected of exposure can receive prophylatic treatment with the same two drugs (just longer treatment period).

The suggestion for not coming to an area if you show signs of a respiratory illness is good and always recommended. I suggest that the more common suggestions be followed if a large group of individuals are working together and that includes the use of soap and water and/or hand sanitizers. The number one prevention of the spread of any respiratory illness is keeping your hands out of your nose, mouth or eyes.

There will be no vaccine available from any pharma company until the Fall. Treatment with antivirals is available. But wash, wash and wash the hands and limit handshaking, etc. will go a long way in stopping the spread. Remind groups to practice good hygene when working in groups. Symptoms are mild in this H1N1 from what the CRC is notifying us but does include headaches, sore throat, coughing and of course fever. It does appear that small children are experiencing nausea and vomiting, something that is not normally seen in the flu. So if members have children at home who are sick, even if they do not have symptoms, they also probably would do everyone a favor if they also stayed away from groups of follks.

Just some additional information for your use.

Rick Kilgore

He also tells me that "hopefully we are going to see a decrease in the number of flu cases as we move toward the end of the flu season" but also goes on to say that it's also possible we may see a more virulent form of the H1N1 by Fall of this year and that of course everyone is working tirelessly to have a vaccine ready.

*Rick's is one of 15 sites in the US who are going to be testing in humans the swine flu vaccine this summer to be used this Fall. He was previously awarded the contract to test the bird flu vaccine later this year. When I asked for an update he said trials start July.

*Update: trials start Aug. and I am fortunate enough to be included! Woo! I believe in the science, the process and the vaccine and I don't care who knows.

Estar bien and gesunheit.