Michael Stein, Mind Reader

28 10 2009

Grocery_aisleI decided to read The Lonely Patient when I noticed the author had the initials M.S.  Hey, it’s as good a reason as any!  He doesn’t write specifically about MS patients, but I was amazed by how well he put into words some experiences I’ve had.  Here’s a sample:

“When a person with chronic illness is out and about, no longer in the hospital or in bed…Signaturebut shopping for groceries, passing papers on a mortgage, or drinking coffee at the office, she is carrying a secret identity…Who knows about…the terror of the upcoming surgery, about the itchy scar under the blouse?  Who at work knows the inconveniences of her illness, the series of discomforts, each tolerable, but one after another allowing no rest?

CoffeeShe doesn’t “look” sick, so she must not be.  The fact that she can pass among strangers while holding this news close, revealing nothing to them, exacerbates the loneliness of her illness.  Somehow she manages the grind of daily life while illness looms over everything, shadowing, trivializing, obscuring what must be attended to.”

Michael Stein, The Lonely Patient


On Wings of Eagles

9 10 2009

This weekend is fall break at my kids’ college.  Inclusion of this mid-semester interlude in the school’s calendar actually dates to when I matriculated there.  The idea was to give students (and professors?) a two-day respite from the rigors of class.

CrimDellThat may still be the motivation, but I’ve discovered it’s also a chance for parents to take a break from going about our daily lives in blissful ignorance of what our young uns are up to, as we have for the past six weeks.  Instead, I find myself revisiting that lifestyle where I worry incessantly about my offspring.  When they’re away at school, I hear from them frequently enough, but I don’t know what they’re into at any given moment.  Not like when they were in high school and I would have a certain level of tension that wasn’t dispelled until I heard the electric garage door go up, signifying their safe return home.

This weekend my freshman is heading to New York City, taking a train that drops him in the middle of the city at 1:50 a.m.  He plans to take a subway to NYU at that point.  The last time he rode a New York subway he was a kindergartener.

My senior son is going to visit a friend who lives in downtown D.C.  And he’s packing his “just turned legal” identification, having reached the magical age of twenty-one last week.

I ‘ve always liked the quotation:

“There are only two lasting bequests we can hope to give our children. One of these is roots, the other, wings.”  (Hodding Carter)

But I’m discovering that at this point in my kids’ lives it’s getting pretty hard to generate new roots in them.  My role is increasingly focused on celebrating as they spread their wings.  And sometimes it’s hard to stomach the worry that comes along with that.

A Whirlwind Weekend

5 10 2009

Small-PlateElizabeth Gilbert, author of  Eat, Pray, Love, said “I am my best person when I have less on my plate.”  I agree with her.  The more stuff that clutters my calendar, the more stressed I become, and everything suffers.  I don’t thrive under pressure.

But this weekend made me reconsider.

Saturday morning I was up with the sun to drive 130+ miles to Salisbury, Maryland, where I gave a talk as part of my “ambassadorship duties”  for the Multiple Sclerosis Foundation.

(Speaking of stress…I’ve never considered myself a public speaker…but I only saw one guy nodding off, and considering the whole MS fatigue thing, I figured that was pretty good.  On the other hand, it was only a ten-minute talk.  For anyone to nod off in under ten minutes does suggest it must have been REALLY BORING.)

The main speaker was a neurologist who was easy to listen to—and easy on the eyes—wink, wink.  After that there was a nice catered lunch (chicken, Halloween candy.)  The event was held at the zoo, so then we took a delightful tour around the animals.  It was a great chance to meet my point of contact at the MSF.  And I’ve never seen such flaming flamingos!  Then 130+ miles back home, with a few stops for food, gas, and cash.

Sunday morning required getting my husband to the airport for a business trip, then Deacon Duty at church, which involves locating and greeting visitors and delivering chancel flowers to someone who might appreciate them.

Then I drove 20+ miles to pick up my mother-in-law, who accompanied me another  20+ miles to her long-time church in Alexandria, VA.  The church dates back to the Revolutionary War.  In 1975 her husband (eventually my father-in-law, died in 2006) wrote a book entitled A Watermelon For God which chronicles the entire church history.  The church was revisiting the book and was delighted to have her in attendance.  She was also thrilled to be there among old friends.  And I was thrilled to be able to make that possible for her.

After the program and another meal (pork chops, Halloween cupcakes), I drove her back home, facing some fierce traffic on 95 South. (Where are all those people headed on a Sunday evening?  Richmond!?) I finally got myself back home, arriving around 8:30.

It was a lot for me to take on in a weekend.  And I was a little nervous going in, particularly with all the driving, because when the fatigue hits, I am very hard pressed to stay awake in the car.  But from where I now sit on this side of the weekend, I am very pleased to have done so many things.  No single thing was particularly earth shattering, but the combination of all of them gives me a real sense of accomplishment.  Life’s little pleasures…..

If You Were Perfect, You Wouldn’t Be Perfect

28 09 2009

A water bearer in China had two large pots, each hung on the ends of a pole which he carried across his neck.  One of the pots had a crack in it. The other pot was perfect and always delivered a full portion of water.

At the end of the long walk from the stream to the house, the cracked pot arrived only half full.  For a full two years this went on daily, with the bearer delivering only one and a half pots of water to his house.

Of course, the perfect pot was proud of its accomplishments, for which it was made.  But the poor cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the water bearer one day by the stream.  “I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.”

flower_gardenThe bearer said to the pot, “Did you notice that there are flowers on your side of the path, but not on the other pot’s side?  That’s because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.  For two years I have been able to pick these beautiful flowers to decorate the table.  Without you being just the way you are, there would not be this beauty to grace the house.”

Each of us has our own unique flaw.  But it’s the cracks and flaws we each have that make our lives together so very interesting and rewarding.  You’ve just got to look for the good in each person.

(I first saw this story in a publication for a Parkinson’s Disease association, though various copies of it are widely available on the web.)

Consorting with the Enemy

21 09 2009

I’ve spent a bit of time over many years pondering the relationship between my mental being and my physical being.  It’s a philosophical question, maybe a theological one.  My feeling has been that who I am is identified by my brain, my mental being, my soul or spirit, as it were.  But my body, my physical being, the business controlled by my heart, lungs, etc. seemed inextricably tied to this soul.  As the song says, “You can’t have one without the other.”brain

However, when forced to ponder the full array of autoimmune diseases, including multiple sclerosis, I am tempted to put some distance between the two entities.  I feel quite betrayed by my body.  It’s a loose cannon.  There’s mutiny in the nervous system.  White blood cells are running amuck.  The French Revolution is being carried out amongst my axons and neurons.  My spirit is the Good Witch of the North; my body is the Bad Witch of the West.

But wait, this won’t do.  Because to ease the impact of this disease, I have to grease the skids, to consort with the enemy.  I have to bribe it with high fallutin’ medicine, nutritious food, regular exercise.  I have to make nice.  But honestly, some days I’m so annoyed with y body I want to toss the injection, skip the yoga class, and chow down on a plate of ribs and fries (extra salt.)

I think Michael Stein was alluding to this in his book The Lonely Patient when he said, “The chilling message of illness is that the body has a life of its own.  Our minds, we understand most clearly when we are sick, follow rather than lead.  The body is despotic.”

Maintaining Secrets

18 09 2009

Ellen DeGeneres has certainly been in the media spotlight of late.  All the talk reminds me of something she said a while back.  (I can’t remember when or where or what the circumstances were.)  Though she wasn’t referring to medical privacy issues when she spoke, I think her reasoning could easily apply to decisions about disclosing a diagnosis.

She proposed that the important thing is not whether you’re in the closet or out of the closet.  The important thing is how having a secret or telling a secret impacts the quality of your life.  When keeping a secret becomes a burden, then consider how much your load would be lightened if you let go of it.  If apprising everyone of your situation would create an unmanageable weight, then keep it to yourself.  That makes sense.

Multiplying Stuff

2 09 2009

chopped treeMy mom tells me that whenever my dad went out of town, she would embark on a major landscaping renewal project.  These efforts usually involved cutting down something substantial.  My excess energy is more directed toward the inside of the house.  Having just attained empty-nester status, I’ve been attacking the upstairs with a vengeance.

First came the moving of furniture.  We’re talking beds, a desk, and a sofa.  Oh, I know they say don’t change anything in your kid’s room when he first leaves for college, but trust me, my youngest is going to be thrilled.  Or at least I think he is.

Now I’m in the midst of reorganizing the stuff.  Not that his room was ever messy.  He’s the “neat one.”  (My other child, a college senior, has a very orderly mind but his room has always been on the messy side.  That’s putting it mildly.) Perhaps the reason son #2’s room is so neat is because, over time, the spare bedroom has become the depository for a massive accumulation of things that have fallen out of favor.  It was, in effect, an over-sized closet.

As I sort through the piles, I’m reminded of a wonderful quotation I saved from a Money magazine interview with Jack Bogle, founder and former CEO of Vanguard, the investment company.  Bogle relates a story to the interviewer:

There’s a big cocktail party on Martha’s Vineyard.  Someone comes up to this writer, I think it’s Joseph Heller (author of Catch-22) and says, “Joe, see that guy over there?  He’s a hedge fund manager, and he made more money yesterday than you made on all the books you have ever published.”  Heller looks over, pauses and says, “Yeah, but I have something he’ll never have: enough.”

Money magazine, April 2007

Instead of stashing the quotation away, perhaps I should post it on my fridge.