Saturday, September 19, 2009

brief, but OK

We spent a short amount of time at the very crowded KORUS festival in Annandale's Koreatown, wheeling Mom around, buying her cotton candy, and drinking in the sights and sounds. There were plenty of food stands (many were way overpriced), some tee shirt booths, and other booths devoted to things like banking and phone services. We met two people that Mom knew, and spoke briefly with them. There was some confusion about meeting some other people-- either they were supposed to meet us, or we were supposed to walk over to where they were. Either way, we didn't meet up, and after waiting a while, Dad and I decided we should go. I don't think we were there for more than an hour, but Mom seemed to enjoy the excitement, even though it wore her out.


some pics before we leave

A friendly alien appears while I'm making spaghetti:

Mom and a bear given to her by a childhood friend:

Right... we're off to the KORUS festival, and might even take Mom on a stroll elsewhere. She'll be in her wheelchair today. Ah, yes, before I forget: we've started her on a muscle buildup regimen. Today, she downed a protein shake made with soy milk. Not the nicest brew, but she was a good sport about it, and she'll do it again tonight. Here's hoping that the drinks, along with some leg-strengthening exercises, work at least somewhat.


gorgeous day

It's a fabulous day outside. Too bad Mom's still sleeping as I write this; now I know how she felt whenever I, as a younger man, would sleep in. "Sleeping your life away!" she'd snarl.

Of course, I don't view Mom's somnolence in quite the same light. I rue the fact that she's missing some fantastic weather, but I don't view her as wasting time or life. She's doing exactly what she needs to do to get through the day. If she wants to sleep, then let her sleep, I say. Your head is the vessel for most of your burdens; it's where you hold up the world. Add three tumors to what's already in your head, and you're shouldering more of a burden than Atlas ever did.

So maybe we should look at the situation in a more positive way: today, the earth shows its beneficence, and Mom can sleep peacefully under the aegis of a smiling sky.

UPDATE, 1:35PM: No sooner do I write all this when Mom wakes up. We'll be heading out to the KORUS festival once Mom is prepped and ready.


Friday, September 18, 2009

visits, a stroll, and tomorrow

Mom had two visitors today: the Quiggs, who passed by to drop off a care package (thank you), and Mrs. Strausbaugh, who very kindly stopped in for a bit and left a full dinner with us. Dad mentioned some time ago that Mrs. Strausbaugh had enjoyed a reputation as an excellent cook when we lived in our old neighborhood way back in the 1970s; from the meal we ate the last time she made dinner for us, we know that Madame hasn't lost her touch in the slightest.

After Mrs. Strausbaugh left, Dad departed on a Korean store run and I took Mom over to Fort Hunt Park for her first real walk in several days. Mom has been getting steadily weaker, and today she barely managed 60 yards. She bravely tried to chug along as fast as she could despite my urgings to slow down, but as she herself noticed, she ran out of steam after only a few steps, wilting like a time-lapse flower, and obliging me to support her with a hug as we shuffled forward across the asphalt. Mom chuckled at her own feebleness, but she didn't fall-- I didn't let her. I held her up, and turned her toward the car before her legs had a chance to give out.

We now know that this weakness is one of the side effects of Mom's Decadron, a corticosteroid that, according to the nurse practitioner at NCI, breaks down muscle tissue. Muscle atrophy, then, is what we can expect as use of the steroid continues. And here's a funny thing: Dr. Meister had tried to correct me when I associated Decadron with Mom's weight loss, claiming that Decadron causes weakness, but to me, the causal chain is pretty obvious: muscle atrophy means decreased muscle mass, which in turn means weight loss. This reference associates Decadron with both weight gain and weight loss, because a drug's side effects will depend on its interaction with each person. (The nurse practitioner at NCI had also noted that many people on Decadron get "thicker around the middle," i.e., they get fatter, gaining weight even as they lose muscle. Mom appears to be an exception, as she isn't gaining fat.) The above-linked online reference also notes loss of muscle mass as a side effect of Decadron. Come on-- get with it, Doc!

Watching Mom's downward progress is always painful, and today was no exception. She was obviously trying hard to maintain as quick a pace as she could, but she was also obviously weaker than she was last week. I have no idea whether Avastin will weaken her further, but if the present trend continues, it won't be long before Mom will be needing a wheelchair full-time, even inside the house. Of course, we've known this from the beginning, but foreknowledge and fruition are two very different animals.

Tomorrow, Dad wants us to go to the local Koreatown for the KORUS (Korea-US) festival. A recent check of shows that tomorrow will be in the mid-70s and sunny, a perfect day for just such strolling. We'll roll Mom around in her wheelchair and see what there is to be seen. That's what care means these days: affording Mom as many pleasant sense experiences as possible, allowing her to drink in the world.


Mom's first Avastin infusion

Kudos to Dad for his doggedness in tracking down the exact date and time for Mom's first Avastin infusion: this coming Thursday at 1:30PM. From now on, infusions will be at two-week increments, and always on Thursday.

Mom is supposed to meet back with Dr. Fine in six weeks, but Dad and I are unclear on whether "six weeks" means "three infusions" or "four infusions." If Mom's first infusion is counted as Week 0, i.e., the day we start the six-week timer ticking, then Week 2 will be the second infusion, Week 4 will be the third infusion, and Week 6 will be the fourth infusion. If, on the other hand, "six weeks" simply means "six weeks," then Mom will have had either three or four infusions by the time we meet with Dr. Fine again. We've left a message with Dr. Fine's office asking for clarification.


feels good to sleep in

Woke up late today. Felt good to do that. Waking up shortly after dawn is no picnic when you're not a morning person, and I've had to do that three times in recent days. I used to wake up at 6 or 6:30 every weekday morning in Korea, back when I was teaching at my mother's university: classes started at 7:40AM, so I had little choice. Like the other teachers, I also had to supply the pep and verve that would get those early morning classes in gear: the students tended not to be morning people, either.

One of Mom's friends is coming over today sometime between 2PM and 3PM, I think. Gotta prep lunch for the family and get myself ready. That latter step isn't hard: I'm a guy, so I don't concern myself with makeup, and I've shaved my head, so there are no styling issues.

The day awaits. En avant!


Thursday, September 17, 2009

muchas Jerry Garcias

Many thanks to Pastor Jeri for her visits both yesterday and today; thanks, as well, to the entire Wednesday Night Live group at church for gathering up some scrumptious food and sending it our way through Jeri. I ate some of the salmon today; it was perfectly cooked, and was a great center for the salmon-and-dill sandwich I made using some of the rolls we received as part of the church's care package.

Pastor Kim came by a couple days ago, and I never thanked him for his visit. Also, a big thank-you to Mr. Jeong sajang-nim for dropping by the same day as Pastor Kim and repairing the kitchen drawers and doors that needed fixing. Mr. Jeong saw the wheelchair ramp outside and made a face-- not because of the workmanship, which he seemed to admire, but because, as he put it to me in Korean, "If you needed something like this done, you should've called me! I've got time to do this sort of thing!"

"Would you have done it for free?" I asked.

"Of course!" he replied. And then he said in a chastising tone, "If you ever have a problem in the future, call me." I'm pretty sure he meant a Mom-related problem, but I was sorely tempted to ask him to refurbish our attic. Heh.

As always, people keep proving that kindness abounds.


lost in translation

It somehow didn't come across, yesterday, that today's visit with Dr. Meister was merely to do more blood work and to get the ball rolling for insurance approval of Mom's use of Avastin. I had been under the impression that we would be starting treatment today, but according to Dr. Meister, we won't be starting until early next week. So stay tuned.


the bad news and the good news

Here are two frames from the MRI scans done for Mom on September 11. They were hard for a non-expert like me to find, but after much digging through nearly 3000 images, I'm pretty sure I've found the correct two frames that show what the doctors were talking about at the consultation. If not, perhaps someone reading my blog at NCI can leave a comment or send an email to correct me. The last thing I want to do is pass along misinformation.

The top frame shows the bad news: Mom has a new mass-- her third major one. The first mass was largely debulked; the second mass grew during the period when Mom was on her daptomycin regimen to guard against potential infection. The third mass may or may not have formed during radiotherapy. Given how aggressively these tumors have appeared-- all within startlingly short time frames-- it's possible that this third mass began forming right after Mom's radiotherapy stopped. I don't know, and I didn't ask. It was mentioned that the radiologist missed this mass, but Dr. Fine spotted it upon review.

The bottom frame shows the more or less good news: Mom's second mass was, in fact, affected by the in-tandem therapy: the darker center indicates necrosis. It's too bad she didn't get the full dosage of Temodar (you'll recall that she restarted radiotherapy before going back on the Temodar), but at least we see that the therapy did something. I should also note that the doctor never said the second tumor had been completely killed off. It still represents a danger. Even a single living cancer cell is a danger.

The plan, now, is to move forward with Avastin. As I wrote before, dosages are administered intravenously. Mom's first session will be an infusion over a 90-minute period. On the second visit, two weeks later, Mom will have the infusion done over 60 minutes. On the third visit-- and on every visit thereafter-- Mom's infusion will last only 30 minutes. The space between visits will always be two weeks, from what I understand. Dr. Fine seems pretty confident that Mom "fits the profile" for people responsive to Avastin. Unlike that article I linked to a while back, he puts the non-responsive rate at 30%, not 50%-- a more optimistic reading of the situation.

For myself, I just hope we're not wasting our time. I'm willing to try Avastin because I've heard good things about it, but I also recall Dr. Tonnesen's pessimism: in his opinion, the treatment won't add more than a few weeks to Mom's life. We'll see. Nothing wrong with hoping for a better outcome.


Wednesday, September 16, 2009


Today's visit in a nutshell:

1. It was determined by the nurse practitioner that Mom's current weakness has to do with her Decadron, the steroid that's keeping down brain swelling. Decadron apparently breaks down muscle tissue; it's also associated with weight gain in the form of fat, but in Mom's case, this hasn't happened: far from gaining fat, Mom continues to lose weight. The two rings on her ring finger now hang loosely.

The best solution to the problem appears to be the resumption of some sort of physical therapy along with the addition of protein supplements like Ensure, soy milk, etc. Mom's diet will be changing accordingly.

2. The newest MRI shows good news and bad news. Contrary to Dr. Tonnesen's assessment that Mom's second growth was "growing right through the radiation," it turns out that the second mass is now mostly necrotic, and appears largely black on the scan. So: radiation and Temodar did have an effect. The bad news is that Mom has a new, third growth, this one located close to the original debulking site, i.e., the left frontal lobe. This mass, however, is lower down in the brain-- the MRI image shows it on the same plane as the nose and cheekbone. The cancer is frighteningly aggressive. (Image to appear later.)

3. Dr. Fine thinks Avastin is the best way to go. I voiced my concerns about starting Mom on a procedure like Avastin therapy without even knowing whether her tumor would respond to it; his response wasn't exactly polite-- it was essentially, "If you want to try a different, less reliable method, well, be my guest and good luck." But his point was that, statistically speaking, Avastin offers the greatest chance of significant tumor shrinkage. With a third mass to worry about, one that may very well have done what the second mass didn't (i.e., grow right through the therapeutic bombardment), this seems like the most rational approach.

4. Avastin isn't administered as a pill; it's done intravenously. Mom will have to receive infusions every two weeks, so the current plan is this: let Mom do six weeks' worth of infusions, then bring her in for an MRI. Instead of coming to NCI, however, Mom will visit Dr. Meister, her current medical oncologist. Our first appointment is tomorrow at 9AM. We'll have to leave early to make sure we beat the rush hour traffic.

That's essentially what today's meeting was about. David and Sean were there, too, which gave the rest of us a great deal of moral support. We all took the elevator down to the lobby and discovered, much to our surprise, that Ulysses James was there with his "pick-up" orchestra, setting up for a noon concert. Mr. James has known our family for years; David and Sean both used to play in his orchestra. I had spoken with Mr. James some time ago about Mom's condition, but today was the first time he had seen her since this ordeal began. From his perspective, it must have been quite a shock to see Mom so thin and weak, sitting quietly in a wheelchair with a helmet on her head. I could see the conductor was about to cry; I didn't blame him, but I thought to myself, Please don't cry, sir, or you'll make me cry, too. Mr. James and his wife have both been very kind to our family. Today was no exception: Mr. James took Mom's hand, kissed it, and said huskily, "You are the most wonderful person I know. I love you."

We knew we couldn't stay long, because we needed to get home and schedule the appointment with Dr. Meister. We decided to sit by the orchestra for a few minutes all the same, and while we sat and listened to the musicians rehearse, we received our second surprise: Dr. Leiphart spotted us and walked over. He told us he would be playing with the orchestra today, which made the situation even weirder: it was strange to think of these two gentlemen-- Mr. James and Dr. Leiphart, who are parts of our lives for very different reasons-- actually knowing each other. A small world, indeed.

So tomorrow, we look forward to the beginning of more aggressive therapy. Our thanks, meanwhile, to Mr. James and Dr. Leiphart for stopping by to see Mom. And thanks as well to Kay Wood, who visited today while I was sleeping off my fatigue after getting only three hours of shut-eye last night.


back from NCI

I'm dead tired at the moment, having had only three hours' sleep. Will write about our trip to NCI after a nap that might last a while.


Dr. Leiphart (far left, violin) and Mr. James (conducting)

Sent via BlackBerry by AT&T

The above pic was snapped in the main lobby of Building 10 of the National Cancer Institute, sometime around 11:30AM. The conductor, Ulysses James, knows both of my little brothers very well (David played the violin; Sean plays the viola and cello). Dr. Leiphart (Mom's neurosurgeon) was there to play with Mr. James's "pick-up" orchestra. An interesting coincidence, to run into two people we know for very different reasons, and to find out that they know each other.


Tuesday, September 15, 2009

big day tomorrow

Once again, a big day tomorrow, as we'll be seeing Dr. Fine (or one of his teammates/team members) tomorrow morning at 9AM. The first part of the consultation will be an interpretation of Mom's MRI, which was taken this past Friday. I imagine the second part will be an explanation of where we go-- or don't go-- from here. There are some painful questions to face, such as how aggressively to pursue the cancer if we know that harsh treatment will mean a severe reduction in Mom's quality of life. Will such treatment be worth the pain of watching Mom in misery? Even the use of Avastin, only recently recognized as an official second-line therapy for GBM, is associated with some horrible risks, such as internal hemorrhaging. It was that risk, in particular, that made us decide not to have Mom's bone flap put back in.

Beyond the question of aggressive treatment is the question of which therapy to choose from. I hope that, through my writing, I've given people some idea of the dizzying variety of treatments currently available for GBM patients. Of course, we can't choose all of them, and none of them is a cure-- that was established at the outset. Although it's a hateful phrase to use, GBM is considered a "dead on diagnosis" disease. As I've said, the only possible positive outcome would be for Mom to somehow live long enough to pass away from old age. As far as ridding herself of cancer goes... there's no chance of that.

Part of life is about learning to confront one's limits and the inevitability of circumstances beyond one's control. This evening during dinner, we saw a clip of the late Patrick Swayze's recent interview with Barbara Walters. At one point, the startlingly gaunt Swayze told Walters that he had accepted the constraints of his disease, i.e., he understood that he had no chance of being free of his pancreatic cancer. He did, however, say that he now lived with an "openness to miracles." An admirable sentiment, but one that needs to be examined, since it's subject to interpretation.

Personally, I'm not big on miracles, if by "miracle" we mean something magical, something that defies the normal course of nature. My own idea of the miraculous is best summed up by a quote from the movie "Bruce Almighty," in which God, as portrayed by Morgan Freeman, says:

Parting your soup is not a miracle, Bruce: it's a magic trick. A single mom who's working two jobs, and still finds time to take her son to soccer practice, that's a miracle. A teenager who says "no" to drugs and "yes" to an education, that's a miracle.

I've spent a lot of time on this blog giving responses to an argument that has been going on behind the scenes, one that comes up periodically when we have visitors, some of whom are in denial about Mom's condition, and who retreat to magical notions of religion when the going gets tough. The problem, though, is that magic is inconsistent and unreliable. You can't base an argument for the power of magic on anecdotes and random, isolated cases. The logic never works. Consider a freak accident: if you're the sole survivor of a plane crash that killed 299 other people, is that a miracle? The magically inclined will think it is, conveniently forgetting the 299 people who weren't similarly spared. The crash survivor who claims he was miraculously saved will have a lot of explaining to do to all those other bereaved families. Personally, I'd say he was just lucky.

To be sure, this cuts both ways: magical thinking focuses not only on the "miraculously fortunate," but also on the "miraculously unfortunate," e.g., someone who is struck by a disease while millions of others are spared. From the magical perspective, it might seem that my mother is being punished for her (or for someone's) sins. Bunk, I say: she's just unlucky, a fact reinforced by current science, since doctors still have little notion of what causes GBM. The cancer's not related to one's personal habits, nor is it caused by any obvious genetic defect (which would make its occurrence more predictable). Because every GBM is composed of tissue from the patient's own brain, it's best thought of as one of those instances in which the body rebels against itself. Bringing magic and superstition into such a crisis situation only serves to confuse things.

However, if we think of miracles not in the primitive magical sense, but in the mundane, unexciting sense quoted above, we can look around us and take delight in the many ways, both humble and grandiose, by which people strive against entropy. It would, for example, be easier for the members of my congregation, or for members of Mom's Korean women's society, or for Mom's circle of friends, to hear the news about Mom's cancer and say "What a pity," then just sit there. But that's not what happened. Instead, people have fought that natural inclination to laziness and entropy, mustering the will to perform some truly extraordinary acts of kindness and charity for us.*

Every visit, then, can be seen as a miracle. Every time food arrives for us, that's a miracle. Every card is a miracle. Every hug, every kiss, every moment that someone holds Mom's hand-- those are all miracles. As the God of "Bruce Almighty" warns us, "You keep looking up." People keep seeking solutions from on high, an instinct that reveals our primitive and misguided desire to see and experience magic. But the solutions are actually to be found down here-- not at the gelid mountaintop, which has little bearing on our existence, but in the valley of the ordinary, where we all are at every moment. In his 1970s classic Zen and the Art of Motorcycle Maintenance, Robert Pirsig says, "There's no Zen on mountaintops." He and I are talking about the same human problem. Believing in magic is like pinning your hopes on fog.

If Patrick Swayze was open to the sort of everyday, mundane miracles I'm writing about here, then he and I are in agreement. If he was, on the other hand, holding out hope for some sort divine deliverance, well... he has his answer. Me, I suspect that Swayze was a hard-driving, practical type, not the sort of person to sit around waiting for angelic hierophanies. In the end, I don't doubt that he faced death bravely and calmly, with his family by his side. And that's as it should be.

So we'll meet with the docs tomorrow. I'm realistic: we can be sure that Mom's prognosis won't have magically changed. But we might learn something about life-extension or, at the very least, about advances in palliative treatment. I'll be curious to find out whether the radiotherapy actually did anything for Mom. Whatever happens, tomorrow will be an important day, and whether we come out reassured or even grimmer than before, we'll at least know more.

*Dr. M. Scott Peck, in his The Road Less Traveled, cites laziness as the basic human problem. Entropy is expressed as laziness in human beings. Spiritual growth-- the fight against entropy-- is a matter of effort and work. It involves striving, getting off one's ass and doing something instead of taking the easy path and doing nothing. For Peck, love is not a mere feeling. Feelings come and go in a mercurial, irregularly tidal manner; true love is action. Love is what's visible when an angry spouse cooks dinner despite his or her anger, or when a parent upset with a child's behavior nevertheless stays by that child and encourages him to study harder or behave better. Love is what we see when people too tired to move or think still somehow dredge up the energy to care for each other. Paul talked in I Corinthians 13 about how love is patient and kind, and that's all true. But love is also the gritty (the nitty-gritty) mortar that keeps the larger edifice standing.

UPDATE, 9/16/09, 2:49AM: THIS PAGE links to a wealth of information about therapies at NCI and elsewhere.


studying up

Tomorrow morning, we get up at 5AM again, as we did last Friday, to head over to NCI for Mom's 9AM appointment with Dr. Fine and/or his team. Today, I'll be reading up on the second-line techniques I've learned about, and if Dr. Fine doesn't mention them himself, I'll bring them up during the consultation. The ideal treatment(s) will be painless and minimally invasive, if they involve surgery at all. I'm mentally prepared to hear that, given the cancer's progress, surgery will not be an option. However, if something like that fiber-optic laser surgery is possible, I'll welcome its inclusion in our list of viable options.

UPDATE, 2:49PM: This is not welcome news.


Monday, September 14, 2009

another through the door

I just learned, sadly, of the death of actor and dancer Patrick Swayze, who has lost his battle against pancreatic cancer-- yet another intractable form of the disease. My sympathies go out to his wife and family.



Today, we celebrated my brother David's birthday. David's a hard one to buy gifts for; if you ask him what he wants for his birthday or for Christmas, he'll usually say "Don't buy me anything" or something along those lines. We do know, however, that David's an avid mountain biker and that he loves electronic gadgets, so we got him gift cards for REI and Best Buy.

My own gift to David was tonight's dinner; I made my usual "crazy bolognese" spaghetti along with garlic bread and a simple salad (baby spinach, sweet onions, almond slivers, alfalfa sprouts, mandarin oranges, and raspberry vinaigrette). Dad, however, deserves the biggest applause for stepping out of his comfort zone-- he says he can't cook-- and making his first-ever vanilla layer cake with chocolate icing, served with several varieties of Ben & Jerry's ice cream.

David also enjoyed the Purple and Brown video to which I linked in the previous post; in a few minutes, I'll probably show it to Dad.

Hard to believe my little brother's thirty-three. Not so little, I guess.


my brother David turns 33

A big HAPPY BIRTHDAY! to my brother David, who turns 33 today.

David works two jobs, often going nonstop seven days a week. In his spare time-- when he has any-- he either comes to visit us, or he goes mountain biking. David's the go-to guy for most tech-related questions in the house. He combines a love of nauseatingly saccharine cuteness with a love of the gross and vile, often emailing me hilarious pictures of demented abominations (far more bizarre than this).

David's also been a steady, level-headed help with Mom, and he's often the one who, when Dad and I fail to elicit reactions, can make Mom say and do goofily humorous things. The world's a brighter place thanks to David.

And now, a haiku:

turning thirty-three
David pauses, ponders life
then goes back to sleep

Finally, a video I'm sure David will appreciate:

Purple and Brown: Bubble Gum


Sunday, September 13, 2009

a day in progress

Today, Mom got up around 11AM or so, and left with Dad for Fairfax Hospital some time after noon to get more blood work done-- this time for her primary care physician, Dr. Royfe, who wants to monitor her blood sugar levels. We wanted to use the results from Friday's trip for Dr. Royfe, but NCI said we would have had to put the order in well beforehand, thus necessitating today's trip to the hospital.

While Dad and Mom were gone, I mowed the front lawn, and have spent a large part of the day hand-washing a pile of blankets and pillows, mostly from my room-- laundry that hasn't been done in months. The word we got from the washing machine repairman was that we shouldn't put blankets and pillows into our washer, however "heavy duty" it might be. Taking these things to the laundromat gets expensive, though, and since I don't mind acting as a human agitator, I filled up some giant plastic tubs and churned away like an enormous, bald Cinderella.

David came over; he, Dad, and Mom took a stroll around the back yard and talked with our next-door neighbor, who hasn't seen Mom since all this started.

We're about to sit down to some chili dogs and Korean food. More later.


quick Saturday report

It's no longer Saturday, but I thought I'd provide a quick Saturday update.

Mom woke up very late. According to Dad, she wasn't out of bed until around 3PM. This is because she had insisted on staying awake all day on Friday-- a day that started at 5AM for all of us. I took a two-hour afternoon nap that day; Mom somehow managed to remain awake until her normal bedtime of 11PM. I still don't know how she did it.

Dad and I now suspect that Mom's disconcerting weakness on Friday night was the result of her lack of sleep. She simply had no strength left: she was exhausted. It's little surprise, then, that she remained in bed until 3PM on Saturday.

Dad went out shopping, and I mowed the weeds in our back yard. The weather was fantastically cool, which made mowing a pleasure. I didn't appreciate the presence of the neighbor's dogs, though; the two ladies who live in the house behind us-- their yard abuts ours-- own two huge, noisy, and decidedly unfriendly dogs. One of the animals routinely tries to climb the fence to get at me, barking insanely whenever she sees me. I'm tempted to feed both dogs Ritalin, but am not eager to have a talk con la policía: I'd have to steal the Ritalin first, you see, having none of my own.

Tonight, because Mom had gotten up and eaten lunch so late, I fed her a small, late dinner (I'd given Dad instructions on what to feed Mom for lunch while I did the mowing), then entreated her to try Sean's "stand up five times" exercise. She performed all five knee bends, cheating slightly by using her hands to tug on mine. But unlike the previous night, she actually had some strength in her legs. That was a good sign. We'll see how Sunday goes. Me, I've got the front yard to mow.


9/11 and facing crisis

You can't know who a person really is until you pluck him out of his quotidian circumstances and force him to face alien situations. This is why people have long believed that crises are tests of character and mettle. True: we each face a new state of affairs at every moment, but thanks to a combination of genetic nature and cultural nurture, we're programmed from childhood to know how to handle the demands of whatever counts as normal for us, no matter our cultural and genetic makeup.

But how do we perform when the normal is ripped away? Being a New Yorker down the street from the Twin Towers on September 11, 2001 must have been such a test. Being a passenger on United Flight 93, or being in or near the Pentagon on that same day, must have been similarly jarring. How do people react in such situations? Do they say, "It's not my affair" and walk nonchalantly away? Do they watch with horror and pity, yet do nothing? Or do they get involved as constructively as possible?

Crises plunge us into an alien environment, a new and unfamiliar world in which, at least for a short while, we find it hard to get our bearings. Our bodies all react instinctively in such situations, but each person's bodily reaction is unique. Some people find themselves filled with fear; others seem able to take violent change in stride. But along with the physical, there's the mental-- the exercise of will. A person initially filled with fear can, if he so desires, master that fear and function, but some people, when faced with crisis, forget they possess a will and simply give in to their emotions. For such people, rationality goes out the window.

I've seen the best and the worst in the human heart as we've dealt with our own family crisis. Some in our circle of care have reacted with denial, unable to face reality, yet ready to blame others should Mom's health undergo a downturn. Others, also in denial, have offered therapies and remedies based on pseudoscience and superstition. I don't doubt that any of these people is well-intended, but such reactions really do nothing to help the situation; in fact, far from helping to impose order on chaos, they make a hard job harder.

Other people, however, have truly shone in the face of crisis. The outpouring of help and concern for our family has been amazing to experience, not to mention humbling. The number of people who have visited Mom and held her hand is a reassurance that there's plenty of good in the world, an insight I saw firsthand during my meager 600-mile walk last year. Cards, food, a new wheelchair ramp that has already seen use many times over-- examples of care are legion, and we're all very thankful to know that Mom is surrounded by such love and friendship. We're lucky to belong to so many communities that, collectively, show such sterling character in the face of crisis.

New Yorkers, the folks at the Pentagon, and the local residents and professionals at the United 93 crash site all demonstrated similar fortitude when confronted with heart-wrenching adversity. Over the years, 9/11 has become a time of remembrance, a day to honor the dead and to reaffirm our resolve in the face of terror. But it should also be a day when we remind ourselves that, at our best, we can shine in times of crisis. And that particular reminder should echo in our heads every single day, not just on 9/11, and not just when dealing with major disasters.

When your world is torn asunder, keep your balance, and don't lose your head. To those who are already acquainted with this wisdom: thank you.