Thursday, July 3, 2014

Purses: The Other Kind of Baggage

Still lifting that bale and toting that barge? Read my latest essay about how MS has us draggin' our baggage: http://multiplesclerosis.net/living-with-ms/purses-kind-baggage/

Saturday, June 21, 2014

Tuesday, June 10, 2014

Flip-Flop, Finale: Coming Full Circle

See the last installment of my essays about mom's final illness:

http://multiplesclerosis.net/living-with-ms/flip-flop-finale-coming-full-circle/

Flip-flop, Part IV: Disease and Its Takeaways

See part 4 of this MSer's journey through mom's final illness:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-iv-disease-take-aways/

Wednesday, April 2, 2014

Flip-Flop, Part III: When an MS Patient becomes a Caregiver

Read my latest essay about the journey through my mother's final illness at:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-3/

Friday, March 14, 2014

Flip-Flop: When an MS Patient Becomes a Caregiver

Read my latest essays about being an MS patient turned caregiver at:

http://multiplesclerosis.net/living-with-ms/flip-flop-part-ii-the-ms-patientcaregiver/

and:

http://multiplesclerosis.net/living-with-ms/me-patient-to-caregiver/

Thursday, January 9, 2014

Sunday, December 29, 2013

New Year’s Resolutions and Affirmations

Read my latest essay titled: "New Year’s Resolutions and Affirmations" at: http://multiplesclerosis.net/living-with-ms/new-years-resolutions-and-affirmations/

Monday, September 16, 2013

Monday, August 26, 2013

Monday, August 19, 2013

A Change of Venue

Hello all,

Just a note to let you know that I've recently gotten a writing gig at http://multiplesclerosis.net/

Because I'm kicking out a lot of writing over there, I probably won't be posting here as often, except to post a link to my newest essays on that site.

Hope you'll join me there!

Read my essay titled: "Meet the Monsters" at:
http://multiplesclerosis.net/living-with-ms/meet-the-monsters/

and:

Read my latest essay titled: "Saying the Big No: Decision and the Informed Patient" at:

http://multiplesclerosis.net/living-with-ms/saying-the-big-no-decision-and-the-informed-patient/comments/#comment-1415

Oh, and don't forget to check out MultipleSclerosis.net's Facebook page.

Thanks!

Kim

Friday, July 19, 2013

On Coping with MS and the Death of Vaudeville


“All I ask is a chance to prove money can’t make me happy.” --Henny Youngman

It’s a great joke. It could have been written yesterday by an MS sufferer who is trying to live on Social Security Disability. Or it could have been an appeal by anyone who is part of the ninety-plus percent of this country, struggling to get by on the dwindling value of a paycheck, living in a house worth less than what is owed.

In fact, the joke is attributed to Henny Youngman, a Jewish comedian whose career bloomed during the early part of the 20th century. We baby boomers were the last generation to see him and his peers on television, mostly as Johnny Carson’s guests during the 60s and 70s when they were elderly, long after their meteoric careers had flourished, first in radio and movies, then as some of the pioneers of early television. Folks such as Jack Benny, George Burns, Milton Berle, Groucho Marx. When they went, vaudeville died a second death.

Vaudevillian Jewish humor seems quaint now, couched in mockery of stereotypical hypochondriac mothers, chicken soup, Yiddish-speaking relatives who fractured the English language, and Rabbis who intoned the 600-plus Talmudic commandments. Quaint because European Jews were a large part of the immigrant population living in New York during WWI, prohibition, and the Great Depression, and their kids born on American soil grew up with one foot in the Old Ways and the other in American Protestant culture. Nowadays, Jews are fully assimilated. Jon Stewart, Adam Sandler, and Seth Rogen are comics by trade but their Jewishness isn’t implicit in their material, only in their bloodlines. Jon Stewart’s style seems to more closely resemble that of Bill Maher than of Woody Allen. If we dig deeper into their backgrounds we find further evidence of assimilation: Bill Maher is half Jewish on his mother’s side and Woody Allen has said that he does not consider his humor to be particularly Jewish.

All I ask is a chance to prove money can’t make me happy. Why do I love this joke in particular? Coping with MS and coping with the death of vaudeville seem to carry equal weight for me. My nostalgic lament for the loss of those particular vaudevillians may simply come from cherished memories of my impressionable childhood. Smart-assed kids like me loved a snappy comeback and these middle-aged Jewish men seemed to own a treasure trove of sarcastic witticisms. But it caused problems. This kind of humor is aggressive. Any girl who employs it is an aggressive female and therefore threatening. My sarcasm fell flat with men in particular, and didn’t go over well in general because I grew up in Toledo, not Brooklyn. Midwestern culture is not known for its sense of irony. During the pre-feminist era, a smart girl who was quick-witted and chose the most abrasive kind of humor was a triple threat. And I wasn’t doing it onstage; I wove it into conventional social exchanges where sarcasm is taboo.

All I ask is a chance to prove money can’t make me happy. It is a bit Jewish in structure and word choice, but not exclusively Jewish in tone or subject matter. Nor is it gauche mockery. I hadn’t heard this joke when I was a kid, but if I had, its meaning would have been lost on me. My fondness for this joke isn’t couched in nostalgia, it is resonant because of what I’m living now. Only a poor person could have written it. And put into its proper context, in the early 20th century, in New York City, it could only have been written by a Jewish immigrant. Henny Youngman emigrated from England and worked in a print shop in Brooklyn, writing jokes for Milton Berle. Youngman was initially an orchestra musician and a prolific gag writer before Berle encouraged him to perform on radio. His ear for word choice and for the rhythms of language enabled him to write effective one-liners delivered like machine-gun fire, punctuating strings of jokes with songs played on his violin. Youngman and Jack Benny both used the violin in their early careers, a throwback to the European tradition of educating children in the arts. Though Youngman’s parents encouraged his musical aspirations, he didn’t find his voice in music, he found it in writing. Music was my original vocation as well until I found my own voice in writing and abandoned the music all together.

Yet, such a connection doesn’t explain my affinity for this joke. It’s still fresh, still relevant. It always will be. One can imagine a poor immigrant standing at a street corner in New York, seeing prosperity all around him and realizing it is attainable, much more so than it could have been in the Old Country. But he also hears the narratives of our Protestant culture, in particular: Money can’t buy happiness. He can't help noting the happiness attached to all that prosperity, so he makes the appeal: All I ask is a chance to prove money can’t make me happy.

It is the anthem of any immigrant group new to this country. It is our founding principle and the heart of our constitution. Life, liberty, and the pursuit of happiness. It is deeply patriotic. It could be part of the inscription on the Statue of Liberty:

Give us your tired, your poor, your huddled masses yearning for a chance to prove money can’t make them happy . . .

. . . along with the 98 percent who are already here, reaching out more desperately than ever for the American Dream. We will all do it together, we always have. This is why I love the joke, it has awakened my patriotism. I shall therefore petition to change the saying on the US one-cent piece from E pluribus unum to “the more, the merrier.”

I like it.



Sunday, June 2, 2013

Pacing the Cage: Identity and MS

I live in a suite of rooms in my mother’s house: a bedchamber with tall windows that let in the light, an office space with a computer and a bookcase, and a bathroom large enough to accommodate a chest of drawers. These rooms are perfectly aligned; I can crawl out of bed and walk straight into my office without opening a door, then push open a door to the bathroom without the slightest deviation from my trajectory. No instantaneous reaction to sensory events is necessary as there are no objects in my path. It is a fledgling robotics engineer’s ideal laboratory. Or the perfect layout for a primate cage at the zoo.

That is not to say that I feel like a prisoner in my mother’s home, quite the contrary. This layout is freeing, I can hobble about with a minimum of risk. I don’t need to use my cane inside the house, I can grab the back of a chair or press my palm against a door frame to steady myself. And when I feel motivated, I can dust and vacuum and scour out the bathtub. Those tasks take all day to complete, but the economy of space in my suite makes these activities manageable. They make me feel useful.

It is important to feel useful. My mother is 80 and suffers from macular degeneration. I drive her to her eye appointments, do a little grocery shopping, perform clean-up after she has cooked for us. I like to think she needs me because I like to feel needed. Seven months ago my husband insisted I leave his house, I had become an unnecessary burden. He didn’t need me, I needed him, and the guilt I felt had driven me to spend hours in front of the computer while he sought a more interesting life elsewhere. Things feel better now, my mother needs my company and my help. This arrangement feels better for both of us. I should say it feels better for the three of us. My husband visits regularly and we all get along quite well.

It would be easy to say that developing MS shrank my life both physically and psychologically. After all, I can no longer take impromptu walks around town or fantasize an expansive future full of accomplishments I can enthusiastically work towards now. The rules have changed. For example, what little exercise I can do does not make me stronger; the problem isn’t in my muscles and exercise does not repair nerve damage.

Retirement on a fixed Social Security income guarantees me a lifetime of poverty and medical debt, which considerably narrows my future plans. I have no wakeful dreams that are not defaced by the graffiti of my disease. When I watched the movie “Avatar,” I interpreted it as a cripple’s ultimate escape fantasy, the story of a paraplegic who permanently flees his broken body. Before I developed MS, I would have watched it like everybody else and applauded Sully’s superhero rescue of the Na’vi’s home from the jaws of military industrial exploitation. Whenever I go on a first date with a man, I overcompensate for my limp and the presence of a cane by standing up straighter than usual, and, with a superhuman (and physically risky) burst of initiative, I hobble so quickly through the restaurant to the exit after the meal is over that the poor guy has no chance to open the door for me. This seems to challenge the inspirational narratives within the MS community. I have MS, but MS doesn’t have me. I am not my disease.

Can I deny that MS has me by the ass, tighter than a shark’s jaws on a hunk of flesh? But, on the other hand, how much has MS really changed my inner landscape, my unique thoughts and motivations, my temperament and daily habits?

I would like to claim it has not. I think and behave as I always have with the addition of a couple of 75-pound iron anchors strapped to my body and mind. Having MS has nudged me farther along the chronological continuum. Having MS is like suddenly becoming elderly when you are still young. I am a creakier, more deeply wounded, less impulsive version of my former self.  Despite having memory problems, mental fatigue and focusing issues, I have no symptomatic brain damage. Really, how different am I?

The fact is, I have always paced the cage. Always lived intensely in my head. Never ventured far from my rooms. Always built up self-imposed inertia until I reached the combustion point and then burst into a frenzy of productivity.  Always and never. Such qualifications are false narratives, just as I have MS but MS doesn’t have me and I am not my disease are false narratives.  I tell myself a great many things about who I am. It seems to soothe me, these declarations of selfhood. I’m convinced I’ll forget who I am if I don’t recite these narratives.

The problem with such recitatives is that they are static concepts. Life is not static, it changes, it decays and it dies. So, too, identity. The notion of perfection, for example, is a static, fixed concept and therefore of no use to a living thing. Any attempt to describe our identities is paradoxical. The moment we say who we are or state how things are, the thing said is no longer true.

Having MS can cause rapid, sudden changes, often unpredictably so. We push against these changes by insisting we have not changed. I have MS but MS doesn’t have me. I am not my disease. But the disease is indeed an inseparable part of who we are and MS does, in fact, have us, just like experiencing the death of a loved one changes us forever, just like breaking up a marriage obliterates everything we thought we knew about love and commitment. We are not the same afterwards, nor should we be.  We become, for a time, members of a select group: the divorced wives club, the middle-aged people who have lost their first parent club, the patients-in-MS-purgatory club who have had one attack but still no diagnosis. The longer we live, the more club memberships we accumulate. As worthless as I might feel on any given day, I can soothe the sting of self-loathing by reviewing my memberships. It feels even better than showing off the Girl Scout badges on my green sash when I was in fifth grade. Things might change from day to day, but what has already happened is as eternally frozen as a broken watch.

Sometimes, when I’m pacing across my three rooms at five-thirty in the morning after a night of sleeplessness, running a narrative in my head of how useless my life is and that I really need to get on the stick and do something to save my pride and self-worth, something makes me stop. Sometimes it’s the sound of a bird singing as the sun starts to rise. Sometimes it’s the sound of our renter in the apartment above as she stirs from her sleep and gets ready for work.

The sounds of life waking and stirring. For a few moments, it’s enough.

Thursday, May 2, 2013

“Freaks" (1932): Horror Story--Love Story--or Empowerment of the Disabled?


Turner Classic Movies, that commercial-free bastion of classic films and thoughtful commentaries, recently showed Tod Browning’s 1932 film “Freaks,” much to my delight—and bewilderment. 

”Freaks,” enthusiastically marketed as horror, is a singular and unusual film made by Metro-Goldwyn-Mayer (MGM) one year after the release of Universal Studio’s horror film “Dracula” (1931), also directed by Browning and starring an unknown Hungarian actor named Bela Lugosi. Universal had been in the business of creating memorable monsters since 1920, often using the transformative talents of Lon Chaney, perhaps most memorably in the “Hunchback of Notre Dame” (1923). The public sympathized with Chaney’s marginalized creatures, just one factor among several that made the horror genre so lucrative for the studio. Metro-Goldwyn-Mayer had only dabbled in the horror genre starting in the late 1920s, but it was better known for “Broadway Melody of 1929,” several Hollywood revues, and “Anna Christie” (1930). And, like other studios during the pre-code era, MGM also covered stories of Jazz Age excesses, hardships and tragedies shoveled atop the underclass at the hands of corrupt capitalists during the Great Depression, divorce, independent working women who indulged their sexual appetites, and adultery committed by both husbands and wives. Amidst these realistic, socially conscious themes, horror found its place—and not without its social allegories.

But “Freaks” is not a horror film--at least, not for me, and this is the top layer of my bewilderment. It is a love story, a pre-code melodrama, about the romantic trials and tribulations of its primary and secondary characters, most of whom are the disabled people who perform in a circus sideshow. But here’s the twist: The disabled characters are portrayed by non-professional actors with real-life disabilities. Why MGM would agree to fund such an outré phenomenon is the second layer of my bewilderment.

Easier to comprehend is that Browning had the ear of MGM that year, having recently scored a hit with “Dracula” (1931). Metro-Goldwyn-Mayer Vice President Irving Thalberg had made a string of horror hits in the 1920s while at Universal. Though he was known to be a risk-taker and visionary, even a humanist, this project would be a big gamble. Browning, who had worked the carnival circuit as a barker and Ringling Brothers circus clown during the years before he began his silent film career, might have used his carnival talker skills to persuade Thalberg to great effect. But perhaps Thalberg didn’t need much persuading. That same year, the studio had also made “Grand Hotel" (1932), a multi-star-studded box office hit and Oscar winner for Best Picture. With similar big money-makers funding less profitable projects in the past, Thalberg was already on record as having said: “. . . MGM can afford an occasional experiment.” Controversial subject matter had usually comprised the experiments, but casting choices had always depended upon which bankable stars in the studio stables would sell the most tickets.

Browning’s unprecedented casting choices for “Freaks” did not wholly stem from his appreciation and compassion for the lives of circus people. He had entered into a long and fruitful association with Lon Chaney to make the bulk of his horror films, cashing in on Chaney’s uncanny skill at playing fringe-dwelling tragic figures who were armless or legless, deformed and abused, and who suffered from unrequited love, ultimately dying in a violently mad act of self sacrifice and grief. Chaney’s ability to win the sympathy of the audience despite his repulsive deformities was key to the appeal of an otherwise visually off-putting genre, a far cry from the beauty ideal of the Ziegfeld Follies or the gritty sex appeal of a Paul Muni crime drama. But Chaney was, in real life, a healthy, whole person, a fact known to his audiences. The reason why Browning did not use Chaney in “Freaks” was the result of yet another fact of life, one as inevitable and irreversible as the endings of his movies. Chaney died of lung cancer in 1930.

But Browning’s last MGM film to star Chaney, the 1930 remake of “Unholy Three,” had provided a link to his latest project. The three principals were a ventriloquist (played by Chaney), Hercules the Strongman, and a malevolent 20-inch tall midget called Tweedledee who kicks a baby while at the circus, causing them all to flee from the police. Harry Earles, the actor who portrayed Tweedledee, would go on to play the lead of sorts in “Freaks.”  His good fortune in this casting decision might simply have been the result of attrition. Had Chaney lived, he most likely would have had the lead.

Chaney’s demise may well have influenced Browning to adapt Tod Robbins’ screenplay for “Freaks” as he did, without a star in a lead role; it is an ensemble film that follows the romantic relationships of several carnival performers. But it also touches on other relationships that have grown within that insulated environment, not only in a way circus people have traditionally enjoyed and still enjoy today, but also as a consequence of able-bodied performers looking after the more vulnerable disabled ones in a place far away from a mainstream society that would have swiftly locked them away.

And so we come to the extraordinary people who were cast in this feature, whose real lives must have been as compelling as those of the characters they played. Harry and Daisy Earles, who were real-life brother and sister as well as seasoned circus entertainers, take center stage as Hans and Frieda, a midget couple in love—until Hans is distracted by the flirtations of the exotic, able-bodied Cleopatra, a trapeze artist. Conjoined twin Daisy Hilton, who is being romanced by the circus owner, is joined at the hip with her sister Violet, who is married to a clown. Three microcephalics who appear in the film (colloquially called "pinheads") were sisters Elvira and Jenny Lee Snow, and Schlitzy, a male who prefers to wear a dress.  Rounding out the featured characters are a legless man, the completely limbless Prince Randian (also known as “The Human Torso”), and The Bird Girl, who suffers from bird-headed dwarfism.

Such descriptions might suggest that the mere appearance of these people on screen would be an exploitative and grotesque pageant of deformities meant to shock and repulse the audience. In fact, Browning not only films the main plot—the evil deeds of the greedy and corrupt Cleopatra who marries Hans for his fortune and then plots to kill him--but also interjects vignettes of the characters’ lives off stage as they hang laundry and gab, commiserate over a drink and a cigarette—here, the Human Torso is filmed rolling his own cigarette, lighting and then smoking it, all the while chatting casually with a friend—and my favorite scene: Madame Tetrallini walking through the woods with her charges, the three pinheads, and their encounter with a stranger who lives near the circus encampment.

This vignette is most resonant and poignant for me for several reasons. Browning wrote and filmed it with great tenderness. The pastoral scene was shot on a bright, sunny day. Birds are singing and a gentle breeze rocks the leaves and branches. Madame Tetrallini, a middle-aged woman who tends to the pinheads, leads them on a walk through the woods and out onto a grassy knoll overlooking a large farm. She gathers the three around her like a mother hen with her chicks. The pinheads are child-like, good-natured creatures that caress Madame’s cheek and hold onto her skirts, hands, and neck. They clearly feel safe with her and love her, and it is clear that she loves them all in return. When they meet a man on the path from a neighboring estate, he is polite and cordial, but Madame seems to sense what he is thinking.

Madame launches into a loving soliloquy about how her three charges are like children, her children, everyone’s children, and we should all look after the children. The pinheads smile up at her and touch her face, hugging her and kissing her cheeks. Visibly moved by Madame’s impassioned speech, the stranger bids a kind farewell to Madame, acknowledging the pinheads as her children and they part company.

This scene is reminiscent of the segment in Charles Dickens’ A Christmas Carol where the Ghost of Christmas Present produces two ragged children from under his robe and shows them to Scrooge, telling him: "This boy is Ignorance. This girl is Want. Beware them both, and all of their degree, but most of all beware this boy, for on his brow I see that written which is Doom, unless the writing be erased." This refers to the cycle of poverty in Victorian London, where ignorance grows up to breed more impoverished children, so beware the boy (Ignorance) in particular. Dickens was a supporter of free public education for the needy, an ideal that promised to break the cycle of poverty. Browning, whose circus experience had instilled in him a deep compassion for fringe-dwelling disabled sideshow performers, most certainly presented this gentle vignette not only as his own soapbox for an impassioned plea to the ignorant public not to fear people who are different—but also as a challenge to embrace these misshapen creatures as they would their own children. 

On its face, this vignette seemed an incongruous insertion in a film that, a few more minutes into the story, would go on to depict some of the other characters in a Russian Absurdist, grotesque manner.  But it was not gratuitous. The night that Cleopatra marries Hans, the deformed performers drink a toast to Cleo and ceremoniously proclaim that she is one of them, dancing a rite of initiation and inviting her to join in. Horrified and disgusted, she screams her true opinion of them as repulsive, inferior creatures. She then starts kissing her lover, the able-bodied Hercules within full view of her new husband, Hans, humiliating him. At this point, character is on the table in full revelation; the disabled performers are kind, compassionate, gentle people who help each other. Cleo and Hercules are the real freaks, grotesque and corrupt. And, as we will soon see, sorely outnumbered.

Cleopatra and Hercules are overheard discussing their plot to poison Hans and make off with his inheritance, and a plan is made among the good folk to thwart them. The climactic scene contains the only horror element I could find. While Cleo and Hercules tend to the ailing Hans in his wagon, the armless, legless, dwarfed compatriots crawl along the ground beneath the wagon holding knives in their teeth, making ready to pounce on the two conspirators as soon as they leave the wagon.

It is here that Browning shifts perspective. Up until this moment, Browning had shot the scenes in documentary style with conventional camera angles. Now that Cleopatra and Hercules know that they are being hunted, they gaze, terrified, at their pursuers before breaking into a run. Clearly influenced by German Expressionist silent film director F. W. Murnau, Browning now switches to low angle camera shots that follow the knife-wielding freaks along the ground, their faces contorted with murderous hatred. Now the freaks look truly terrifying—but that is only because Browning is shooting the scene from the conspiratorial lovers’ point of view.

What happens to them has been largely cut from the final print. Hercules is castrated and killed, and Cleopatra is tarred and feathered before being disfigured and mauled. A raving lunatic, she is put on display in a sideshow as the Human Duck, a quacking feathered torso with duck-like feet. The only portion that made it into the final cut was of Cleopatra’s fate as a sideshow freak—a violent initiation into the club that had invited her to join them on her wedding night.

For me, the horror element of “Freaks” lies only in the revenge fantasy aspect of the final scenes. But “Freaks” is so much more than that.  Billed as a horror film, it was about much more than it needed to be about. It failed miserably at the box office simply because audiences in 1932 were repulsed by and offended at the sight of actual sideshow freaks. The social themes were lost on them, they were not entertained, and MGM lost money on the project. Browning’s career suffered irrevocably from this failure. The cast went back to their careers as carnival sideshow attractions.

Happily, the AFI preserved and restored this film, labeling it culturally or aesthetically significant. What was called a horror film then might some day be considered a story about the empowerment of the disabled to overcome prejudice and exploitation.

Friday, March 15, 2013

Spring Ahead, Fall Back



Though this mnemonic describes the clock adjustments of Daylight Savings Time in the spring and Standard Time come fall, it could also describe the struggle to move forward after my marriage ended abruptly some four months ago.

Losing that precious hour on March 10, 2013 meant only a minor interruption to my schedule; I no longer work and can therefore rise at any hour I choose. But I had spent the weekend with my new lover, who does work, and my time with him was limited.

Working people generally put off doing laundry until Sunday, preferring to have their fun and freedom all day Saturday. Sunday is the Zen day, when the working person wanders around his house, reluctantly pushing away the memory of Saturday’s Bacchanalian revelry. He shapes his lips to breathe out a silent om and braces up for the work week ahead. My lover’s weekend ritual is no exception, and because he lives some distance away from me, he needed to leave before noon.

On Sunday morning, when time had jumped ahead one hour, he rose early and I late. I insisted on making him breakfast, but he felt ill at ease, rushed. We argued about it, which irritated me. He only had a date with a buddy to play pool at noon back home, something he had done regularly with this friend before he met me a month earlier--and so, I thought, why not call him and delay it? I didn't question him or complain, only struggled with these thoughts. We've only seen each other four times since we have met. It isn't a relationship. He isn't wooing me. We’re dating and sleeping together. My marriage broke up only four months ago. I’m trying to move on, but so far I am reminded of how much I've always detested dating, starting over, enduring these gray areas, noting what is missing. What is missing is an emotional bond. After he left, I sat down and cried. I missed my husband.

Oddly, this was not what I had anticipated. My husband ended our marriage because he resented my disease, I couldn't be his activities partner. His retirement dream was to sell everything and take his sailboat across the Mediterranean, visit Spain, Mexico, Ecuador, a dream I could not share. A few months after I tearfully left him and moved in with my mother, I registered on several dating sites. Considering why my marriage broke up, I was worried that my MS would discourage any potential suitors from pursuing an involvement. But my dating experiences have so far proven otherwise. I was surprised that the two men I met didn't frown at the sight of my cane. Instead, they expressed their admiration for my beauty, intelligence and wit. They wanted to see me again.

I've taken a big leap forward in terms of confidence and self-esteem, I am no longer worried about MS preventing me from finding romance again. But memory and that enduring bond of love have pulled me back a few steps. Just as I have learned to be patient with the ups and downs of the disease, I must, once again, learn to be patient with the quest for loving and being loved in the ways that I need and desire. 

Tuesday, December 4, 2012

It's Complicated


We cripples have learned a thing or two about the Laws of Physics.  For example, a body in motion stays in motion and a body at rest tends to keel over and plant itself face down on the sidewalk.  That’s one of the easy ones.  Gravity claims us all sooner or later, but it claims a cripple a little sooner than most.  We know that aging is the great leveler, we’re just waiting for our peers to catch up with us. We might need a cane or wheelchair in our fifties, but don’t we feel a bit smug whenever some able-bodied person scoots around us, frightened of his own inevitable decline?  That’s okay, we think, you just keep running, buddy, the day will come when you can’t run anymore. You go, Charlie. 

We cripples have also learned a thing or two about love. How spouses, for example, who love us very much, can entertain a twinge of disappointment when we cannot go for an impromptu walk around town, enjoy the rush of blood in our limbs and the air in our lungs, the quickening heartbeat, the children playing catch in the street and the sun slipping towards the horizon. It is an uncomfortable feeling, disappointment, it makes them feel that perhaps they are not good people for having such twinges. So they push it away. 

But these small disappointments can accumulate over time. We are not aware of this, of course, though we do worry that it is being felt. We perform reality checks on an annual basis, we give our spouses opportunities to come clean.  But they reassure us, year after year, that it doesn’t matter, honey, I love you, I’m not going anywhere. And we believe them. We believe them because they dote on us, bring us coffee and cook our breakfast on Saturday mornings. They do all the housework and grocery shopping, open packages for us, chop the veggies for dinner. And they do not withhold affection, we get held and kissed and gazed at lovingly every day. So it must be true. It doesn’t matter. They love us. They aren’t going anywhere.

And yet we have doubts. We push those doubts away and tell ourselves they are of no consequence.  But they infiltrate our bliss in various ways; in my case, in a recurring nightmare. My husband and I are at some event in a large building with a stage. When the performance is over we head towards the exit along with everybody else. The crowd swirls around me and my husband is no longer at my side. I search for him, spot the back of his head a few yards away and push through the crowd in that direction. But I lose him. I cannot see him anywhere. My vision begins to darken and my legs weaken. I hobble along corridors through room after room and decide to head for an exit, he’s sure to be outside waiting for me. By the time I reach the door, the building is empty and I am alone. I step outside into the waning light, hysterical with grief, and peer at the narrow distances, past a now empty parking lot and across a barren landscape, and drag myself in the direction of home. Just before I go completely blind, I awake.

An MSer’s worst nightmare is not physical decline, it is abandonment. A couple of months ago, my husband of not quite two years, my partner for six, my doting, kind, funny, compassionate mate, informed me that he didn’t want to be married to me anymore because he resents my disease. I cannot be his activities companion. He feels like a coward about the future. He cannot be the husband I need and deserve. 

It doesn’t matter, honey, I love you.  I’ll never leave you. Yes, he spoke those very words, year after year. Old reliable, he was. Like a 20th century car that gets an annual tune-up by its conscientious owner even though it never needs the points and plugs replaced. The fact that you cared enough to perform routine maintenance endeared you to it in a human kind of way. Unnecessary maintenance, but cute, very cute. I get a pat on the head for being so aware, so thoughtful, so painstakingly dedicated to taking nothing and no one for granted.

What isn’t cute is that annual reality check was never an invitation to placate me. I was not trolling for the lie, I was courting the truth, the whole truth, and nothing but the truth, so help me God. I’m funny that way.  I need to know even if it hurts. He knew that about me, knew that if he wanted out I would want to know about it. I told him that. Honey, if you ever decide that you don’t want to take the whole journey with me, I’ll understand. We’ve all got to follow the path we think will make us happy. And I meant it, every word.

Perhaps it was pride that held him back, or the prospect of getting bad press, I’ll never really know for sure.  Look, there goes that guy who dumped his disabled wife. What a putz. There are not a lot of ways to spin that kind of abandonment in a way that would make yourself a sympathetic character, goodness knows.  Judgments would be harsh, there is just no getting around that. It’s enough to hold a husband hostage in an unhappy marriage for months, even years. Keeping such a grave secret took its toll on him, and when he fessed up to me about his unhappiness, he wept deeply and often while I took in the news; I was at first incredulous, then defiant, bargaining for a delay in his decision until he sought therapy. Eventually, acceptance silenced me. I had just gotten the news that my marriage was dying and I had the grieving ahead of me, but for him it had died long ago and he was simply revisiting the grave with a heavy and regretful heart, only this time, he had brought me along. I had to leave.

He moved me back to my mother’s house where I had lived for twelve years before meeting him. I lay on my old full-sized bed and cried, feeling as though I had been punished and sent to my room without supper.  My mother had painted my old bedroom white after I’d moved in with him. And I suddenly felt as though I had never left that bed, that I’d been in a coma for five years, dreaming that I lived in another house with a husband, two dogs, three birds, a garden, lulled by the sweet strains of marital devotion, and now I had awakened back in my old bedroom, the white walls being the only proof of the passage of time.

A month has passed since the separation. I was sad, grieving, angry, bewildered for the first two weeks, but I’ve stopped crying now. I feel relief, I’m free. Liberated because I am no longer waiting for him, no longer feeling guilty for not being normal, no longer afraid that I’ll disappoint him. The worst has happened, I’ve been abandoned because of my disease. 

But it is not the hardship that I feared it would be. I missed him for a while, for two weeks, but then I stopped, and that in itself troubled me. I realized how distant he had become for the whole previous year and how easily I had made excuses for him. He was tired, he worked two jobs and had other responsibilities besides. He was in a twelve-month rehab program and I figured I was there on a rain check for a year, I’d wait for him to finish it and then I’d get him back again. I championed his progress, felt proud of him, in love with him, desirous and lonely, yes, but he was going through a tough time and I should try not to act too needy. I was very patient. I thought we were happy. I thought I was happy, but I wasn’t. And the fact that I stopped missing him so quickly saddened me, it meant the relationship had been over for me, too, and for quite a while. I simply hadn’t owned it.

I saw a therapist immediately, before I left my husband.  In my first session, I told my therapist that I was suffering from low self-esteem, that my self-worth was in the toilet. After all, I’d just gotten dumped out of a marriage because I was not whole. But by the end of the session, he told me a startling thing:  I possess very high self-esteem, I just think I don’t. We call that cognitive distortion. 

The distortion, it seems, came about when I got the bright idea to abandon my expectations. One should have expectations in a marriage, who doesn’t know that? Apparently, I don’t. I didn’t expect my husband to want to share activities with me, explore the depths of intimacy. I didn’t expect him to make plans with me for the future, be my health advocate in an emergency, I didn’t even expect him to want to be married to me forever.  Gratitude had displaced any reasonable demands I might have made. Gratitude so deeply ingrained that I felt I hadn’t the right to intone: “Please, sir, I want some more.” After all, I wasn’t a starving, abused orphan in a workhouse. I was well-fed and loved.What more could a middle-aged cripple want from a new husband?

And I had my own pride to contend with, my own fear of bad press. The odds were against us, so many women with a chronic disease or catastrophic illness are abandoned by their husbands. I didn’t want to become a cliché. Having expectations certainly wouldn’t tip the odds in my favor. And so I never protested when he wanted to stay overnight on his sailboat Friday nights, join a rock band, rehearse two days a week, and gig on the weekends. He had his freedom and I retreated to my office, seeking refuge in my online patient community of friends. There, I developed the intimacy my marriage lacked.

Now that I am single again, my friendships continue to nourish me, I still have the intimacy. And I’ve made plans to find my groove again as a writer, I’ve long neglected a book I started writing several years ago.  But what continues to haunt me is the notion of expectations. If I ever consider marriage again, I must bring to the table a list of expectations and a promise to myself that gratitude shall be reserved for acts of kindness only and never become the sole tenet of my marriage philosophy. The prospect of such a thing seems daunting right now, in fact, it upsets me to think about it. 

The fact that it troubles me to imagine such a testament to self-worth means I have some healing to do yet.  And heal I shall.  My husband has given me a gift I would never have asked him for: I’ve gotten my whole self back, intact, for the most part. And I won’t squander it.  Not ever.

Tuesday, July 24, 2012

This Just In: Karmic Tsunami Hits MSer, Happiness Predicted

Last week, a tidal wave of surprises engulfed an unsuspecting MSer in her home in the quiet town of Tecumseh, Michigan.  No one was hurt, but the 54-year-old woman, Kim Dolce, who has had relapsing-remitting MS since 1999, says the experience has left her breathless and grateful.  It all started when she suddenly found herself adrift in a raging sea of good feelings after visiting her mailbox one Monday afternoon.

"I pulled a 10 x 13 envelope out of the mailbox from some law firm in New Jersey," Kim began, "and at first, I thought I was being sued."  But the envelope contained a legal document of inheritance, of which she is a beneficiary.  Her father's aunt, who died in 2010, had left a sum to her dad, but his death in 2008 required that sum be split four ways between Kim and her three siblings.

"I knew I had something coming back when my great aunt died, but I thought it would be a few hundred dollars at most.  I forgot all about it, frankly."  Kim won't disclose the amount, but says it is under $10,000.  When asked what she'll do with the money, she mentioned buying a new stove and refrigerator, giving some to her mother for a bathroom upgrade, and getting a few much-needed car repairs.  Though she is deeply in medical debt, she said: "I don't think I'll pay off those debts, they'll just come back around again after the first of the year.  Routine MS tests are expensive and they'll always be there.  If I paid them off, it would be like flushing money down the toilet."

As if this weren't enough, Kim received a surprise chat message the following afternoon.  An old friend living in Florida had snuck unannounced into the nearby town of Toledo, Ohio, and messaged her from the home of one of their mutual friends, suggesting that they all meet for an impromptu dinner in Sylvania.  Despite her MS, Kim felt up to it and within hours, Kim, Larry, and Juli all snuggled into a booth at Olive Garden and had a chatty visit while enjoying chicken marsala, seafood soup and cheese ravioli, finally getting kicked out of the place at 10 p.m.

Ever since 2008, the year MS forced Kim to retire, spontaneity had become a luxury she could no longer afford. "Normally I have to plan a trip to the bank or supermarket days in advance, just to get mentally prepared for the effort," Kim told us.  "But for this--I would have crawled on bloodied stumps to see my friends that day.  It was downright inspiring."

Although Kim had planned the next day well in advance--a trip to the Ann Arbor Art Fair--she had expected this foray to be short, considering how insufferably hot and uncomfortable the weather had been, and how difficult it would be to walk from the parking structure to the streets and then to peruse the various art displays.  "I haven't attended an Art Fair for 15 years," she said, "I couldn't get excited about limping around in the heat and humidity and worrying about where the nearest bathroom was."  But it was friendship that once again inspired her to brave the elements after all those years. One of her MS friends whom she had met online but never in person, was an artist who had a booth there.  Kim was determined to show up and support her friend, and wanted to meet her face-to-face, something she rarely does with her many online friends with MS.

"The temps that day were, thankfully, much cooler, and Laura's booth was in the shade," Kim told us. "A cupcake shop with a bathroom, directly behind her booth, provided instant refreshment and relief.  We sat outside the booth and chatted for a couple hours, it couldn't have been lovelier."  Lovelier yet was the fact that Kim, armed with an inheritance, could now afford to purchase one of Laura's etchings. "I'm thrilled with this piece," she gushed, "I hung it in my office right over my computer where I spend most of my day. Now I can glance up at it when I'm chatting with Laura, and I can enjoy it all day long and think of that special visit."

The next day, Thursday, was also planned.  Kim's 21-year-old niece, Alina, had had maxillofacial surgery that Monday and was feeling up to having visitors.  "I cried all day Monday while she was in surgery, I couldn't bear the thought of her being in pain.  I just had to give her hugs and kisses and see that she wasn't suffering."  Kim had expected Alina to be very swollen and bruised, but aside from chipmunk cheeks, she looked good.  "The pain meds were making her nauseous and constipated, and she did throw up," Kim said.  "But she's off the meds now and doing much better."  Kim brought her mother, and they all had a great visit with Kim's sister, Dana, who is Alina's mom.

But the tsunami had thrown out a hint of its arrival several days before the Monday mailbox surprise.  Kim's husband, Mark, who moonlights as a computer repair technician, visited a new client the weekend before.  The client, who Mark had met while volunteering to serve free dinners at a local church four nights a week, turned out to be a millionaire who paid Mark twice what he had charged.  When Mark came home, he handed Kim a one hundred dollar bill.  "It might as well have been a one million dollar bill," Kim remarked.  "We never have much disposable income after paying the bills. I tend to nurse along the $30 left in my checking account for four more weeks until my Social Security kicks in again."

The client wants Mark to fix his many computers at one of his plants in the near future, and to continue making house calls for his personal computer as well.  "I'm gonna be this guy's bitch,"  Mark told us, "and I'm gonna enjoy every minute of it."

And that's the way it is for July 24th, 2012.  A tsunami of good folks, paying it forward, inspiring each other, wreaking bliss wherever they go.  I don't think we'll need to contact FEMA for this happy disaster.

Tuesday, July 3, 2012

Pasta and Peeves: The Latest in MS Research

For those of you who are new to this site, I'd like to extend a warm welcome and a brief description of my mission. Those of you who are familiar with my acute insights and penchant for accuracy already know I have dedicated the bulk of my days to intense research on recent scientific breakthroughs the world over that help to improve the diagnostic process and treatment of MS.  It is my mission to bring this information to you with a thoughtful interpretation of its real world impact.

Here are a couple of tidbits you might not have read about.

CCSVI:  The Italian Job

Most of you are aware that Dr. Paolo Zamboni conducted a small study of MS patients in 2008 and discovered that they all had a condition he named Chronic Cerebrospinal Venous Insufficiency (CCSVI), or, as the Sicilians like to call it, linguine vene tritato,  (chopped linguine veins) where narrowed blood vessels in the neck and head prevent blood from properly draining, thereby causing iron deposits and demyelination in the brain.

"The veins, they should-a look more like spaghetti marinara," Dr. Zamboni told neurologists at a conference in Switzerland that year.  "So, whaddya gonna do?  Clean 'em out.  A little olive oil, garlic, and Chianti wash and poof!  It's all-a good now."

Zamboni's technique, Liberation Therapy, also involves inflating a small balloon in the vein, or stenting if venoplasty fails to keep the veins open.  Researchers at the University of Buffalo have employed these techniques in the US, but have omitted the oil, garlic and wine from the procedure.

"Americans are very health-conscious," an unnamed source from the University of Buffalo told me.  "They want a fat-free therapy.  Sure, they want a therapy that improves their symptoms, but they don't want to get fat and have to go on a diet afterwards.  And some of them were afraid to drive post procedure with the smell of wine on their bandages."  Researchers have been working to develop a fat-free olive oil and alcohol-free wine to solve this dilemma, but success is at least ten years away.

Evolution of Diagnostics Criteria--and the Latest Development

The Schumacher criteria: Developed in 1965 and laid the groundwork for diagnosing MS through a clinical neurological exam, the involvement of two or more parts of the CNS, mostly white matter involvement, and the elimination of all other possible conditions.

The Poser criteria:  Replaced Schumacher in 1983 with the development of MRIs and spinal taps that better revealed the presence of disease. These criteria required the presence of at least two lesions and two separate relapses for diagnosis.

The McDonald criteria:  Replaced Poser in 2001 with similar criteria but used advancements in MRI imaging to provide more nuanced evidence of enhancing lesions with gadolinium dye, and VEP testing.

The Burger King criteria:  New in 2013.  Testing similar to McDonald, but flame-broiled.


That about wraps it up.  And don't forget to share this with all your MS friends and loved ones!


Sunday, May 27, 2012

War on Terra 2012: The Peace that MS Hath Wrought

Folks, in celebration of Memorial Day, I declare a ceasefire. I know those pesky T-cells won't honor my petition and lay down their bazookas, but at least we can ignore them for a while. Maybe they'll get bored with the silence and retreat to the nearest lymph gland, kick back, have a couple of beers and watch reruns of "Combat!"

I want to share with you what I'll be watching every day during the warm months to come:
Just a few glimpses of my backyard on May 26th, 2012. The fruits of my creative imagination, the little physical effort I can muster, and nature just doing its thing. Ahhhh. This is what I gaze at every morning. What I wait for after the dark days of winter have burned away. A leaf, a shadow, a breeze.

Enjoy.

Friday, May 4, 2012

Pain Clinic 101: Fools Rush In . . .

Class, today we will discuss the follow-up LP for patient Kim Dolce. (Groans from graduate students sitting in the front row.)

To briefly review, Kim had a painful and unsuccessful lumbar puncture in March of 2012, and was then scheduled for an LP performed under fluoroscopy in April. The LP provided the delivery system for a bolus of liquid baclofen, after which she would undergo six hours of testing to become a candidate for intrathecal baclofen pump surgery for relief of MS spasticity.

(Grad student in front row makes an origami angel and launches it at the feet of the professor, which he ignores.)

Kim was placed on her stomach and given an I.V. of Versed and fentanyl. This was conscious sedation, as she had to recover quickly in order to undergo those six hours of testing. The LP was painless and successful, and she was rapidly transported to Physical Medicine for the rest of her testing.

(Professor shifts one foot, crushing the origami angel with his heel.)

The walking test showed that Kim's ability to step heel-to-toe had improved with the baclofen test dose. At 50 mcg, this dose was rather strong and resulted in "noodle legs." Her doctor then told her that the test was successful and that she is a candidate for the pump.

But Kim still has reservations about the pump. She questioned her doctor about what maintenance was involved. The surgery requires an overnight stay in the hospital followed by a week of recovery. If there were no complications, she would then have the baclofen dose slowly titrated until she attained the "sweet spot," that balance between tone and relaxation in her legs. This process could take weeks or months to accomplish. During this titration period, she must do physical rehab three days a week for an unspecified length of time.

Once the sweet spot is reached and PT ends, she will be encouraged to maintain a regular exercise and stretching regimen at home. If her spasticity level changes and the doctor determines that she needs a dose adjustment, she must return to PT to acclimate her body to the new dose. This physical therapy program must be done each time the dose is readjusted. The drug must be refilled every six months, and the entire pump must be replaced via surgery every seven years. Kim must travel 45 minutes to the hospital for all of these procedures.

Kim's main concern is that this kind of care runs contradictory to her overall goal of simplifying her MS care and bringing all of her doctoring local. These procedures carry a much larger out-of-pocket expense than the very inexpensive oral baclofen. Her budget is strained already, since she struggles to pay her ever-increasing medical debts and prescription co-pays on a stagnant Social Security income.

Currently she takes 60 mg of oral baclofen and frequently adjusts her dosage based on the sometimes daily changes in her muscle tone, which can cause cramping and pain. If she gets the pump, dose adjustments are completely out of her hands. She knows that patients cannot take more than 120 mg of oral baclofen, so she is at the halfway point in her dosage and has some wiggle room. At this point, she prefers to stay on oral baclofen and try to establish a daily exercise routine that she can tolerate. The pump would be a last resort if she reaches the maximum dose of 120 mg and has no choice but to go to the pump.

(Professor lifts his foot and picks up the origami angel, now scuffed and gritty, and rubs off the dirt with his thumb.)

"Anybody read Alexander Pope?" the professor asks, gazing at the origami angel.

"I have," says the grad student who had made the angel and thrown it at the professor. "He wrote the line: 'Fools rush in where angels fear to tread.'"

"Is Kim a fool, or an angel?" the professor asks.

The grad student clears her throat. "A fool makes hasty decisions in ignorance, whereas wiser heads--"

"Are you then suggesting that Kim is wise to delay this decision?" says the professor.

"Uh, yes," says the grad student in an uncertain tone.

The professor pulls out a paper and scans it. "It says here that both her neurologist and her physical med doctor have reported that their patients who chose the pump are very happy with it and doing better. The physical med doctor has written a paper on ITB pumps as a disease-modifying therapy. She claims that it has kept MS patients walking longer over their disease course." He glances at the grad student. "You're a literature major, aren't you?"

The grad student nods.

"Good," he says, "and what was Pope referring to when he wrote that essay?"

The grad student thinks for a minute. "The rash or inexperienced will attempt things that wiser people are more cautious of. In Pope's essay, he speaks of critics attempting to mediate a discussion about which they know little."

"Would you agree, then, that Kim's level of experience and knowledge is better than those of her doctors?"

"Well, no," says the grad student, "but her reasoning for delaying the surgery was thoughtful and sound."

"Then," the professor begins, "you would not describe her decision to 'throw out the baby with the bathwater,' a total rejection of an established, proven medical procedure in this case, as a rash, dismissive folly based mostly in fear?"

"I got the impression that Kim is neither rash, nor fearful, nor ignorant--"

"Didn't Pope also coin the phrase: 'A little learning is a dangerous thing?'" the professor asks.

"So," the grad student says in a lower tone, "you're saying that Kim only absorbed enough information to support a decision she had already made prior to the ITB trial dose? That she started out with a bias?"

"Great topic for our next class discussion. How about you lead that one?" He hands her the origami angel and she gently grasps it, shaking her head. "If you want to earn some extra credit," he tells her, "bring me an origami fool." He smiles. "I wonder who it will resemble."

Friday, March 30, 2012

Pain Clinic 101: How not to Perform a Lumbar Puncture

Class, today we will examine a case study of a patient who received a test dose of intrathecal baclofen. (Groans from the undergraduates in the back row.)

Now class, this is an exceptional case. The patient, Kim Dolce, arrived at the hospital to undergo an eight-hour test of observation and PT exams after first receiving a bolus of liquid baclofen delivered via lumbar puncture. She had not taken any oral baclofen for the previous twenty-four hours. An I.V. puncture was attempted during the first two hours after Kim was admitted, but after two failed sticks, an ultrasound machine was used to locate a vein in her forearm and the I.V. was successfully placed. She was asked permission to have four doctors from other states observe the procedure, to which she agreed. She was first placed on her side in the fetal position. The pain doctor then gave her an injection of lidocaine in her lower back to numb the area.

“Ouch!” Kim yelled, after which she fell silent.

Her doctor then inserted a needle into the spinal cavity. “Jesus f*@$ing Christ!” Kim screamed. The doctor withdrew the needle.

“Is it the pressure or is it pain?” asked the nurse.

“Pain, pain,” Kim growled between clenched teeth. The doctor again inserted the needle. “Aaaach!” Kim wailed. As the doctor continued probing with the needle, Kim began to use the breathing method employed by women in labor. She was instructed to tighten into a ball and tuck her chin to her chest. Several more attempts were made while Kim yelled in pain, but the doctor could not penetrate the canal.

“Let’s try having Kim sit up,” suggested the doctor. Kim was shaking, her muscles now tightened and spastic. She struggled to sit up and then bent forward over a pillow, tucking her chin to her chest. She could not stop shaking. Another shot of lidocaine was administered. The doctor then inserted the needle.

“Stop!” Kim screamed. “I need a break!”

“Okay, I’ll give you a break,” said the doctor. Although Kim sat for a minute, she could not compose herself and felt a cry coming on, but she held back. Her gown, which had been untied at the beginning of the procedure, had fallen down and she pulled it up to cover her chest, but it kept sliding down her shoulders. She suddenly felt freezing cold, the shivers making it increasingly more difficult to pull up the corners of her gown.

“Let’s try this again,” said the doctor. She inserted the needle and Kim felt the searing pain again and jerked away from it. The doctor inserted the needle again, and Kim felt it like a knife. “Did you move off the edge of the bed?” asked the doctor. “Move backwards onto the bed.” The needle was still in Kim’s back and she could not move.

“I—can’t—move—with—the—needle—in,” she gasped. The doctor removed the needle. Kim struggled backwards onto the bed, yanking on her gown that had again fallen down and now revealed some breast, and again the needle went in. “Aaaahhh---fuck, stop!” she cried. She told the doc how the last time this happened, two residents were experimenting on her. Like a Greek chorus, the visiting doctors voiced a collective oh, dear, yeah, as though they all knew what she meant.

The doctor explained that this has never happened before, it usually goes very well, and launched into told a story about how one patient wound up on the floor after failed attempts to open the spinal canal, arching his back against the bed so the doctor could finally achieve entry. Then Kim began to weep.

“She’s crying,” the nurse told the doctor. Kim’s husband, who was sitting in a chair working on a laptop, walked over to her and held her hand.

“The last time this happened,” Kim said haltingly between sobs, “they sent me down to the fluoroscopy guy and that worked out just fine.”

“Okay,” said the doctor, “I’ll call down there and see if we can get you in right away.”

Kim yanked up her gown and nodded, wiping away tears. She reached around and massaged her back, which now ached near the site of the puncture. Her muscles were so tight that she found it difficult to lie down and straighten her legs.

“Do you want some Ativan?” asked the nurse. “Have you ever taken Percocet? Ativan will relax you and take care of the muscle spasticity, too. Percocet should relieve that back pain.”

“I haven’t taken either, but yes, I’d like them both,” Kim said. The doctor reminded Kim that when she has the surgery for the ITB pump, she’ll be under general anesthesia. “Thank the baby Jesus,” Kim muttered. The visiting doctors laughed, much to her relief. The nurse pushed a bolus of Ativan directly into her I.V., and she felt instant relief. She swallowed a Percocet pill and lay on her side, falling into a relaxed stupor. After an hour, the doctor informed her that they couldn’t get her into fluoroscopy in time to complete the test, so Kim would be rescheduled another day and report directly to Radiology to have it done—with Ativan and, if she wanted, perhaps some Versed as well.

“Yes, put me out, I don’t want to feel a thing,” Kim said. After another hour’s rest, she got dressed and left with her husband. “Let’s eat at Pita Pita,” she told her husband, “I need some good Lebanese food.” She dined on fatoush and chicken shawarma.

For dessert, she ordered a simple demitasse of Turkish coffee, savoring that first sweet, citrusy burst of cardamom. “Ah,” she sighed, grateful that the meal was as good as it had always been at her favorite Lebanese place. “Best cup of Turkish coffee,” she told her husband.

“I’m sorry you had such a shitty day,” he said. But she barely heard him, clutching the tiny cup and grinning at him. She tasted the gritty bloom of flavors on the back of her tongue and peered at the bottom of her cup, wondering how they could make such a perfect thing.

One of the students in the back row raised his hand. “Uh, why didn’t the doc send her to Radiology in the first place?”

The teacher closed his book and said “That will be our next class discussion. See you all on Friday.”

Sunday, March 11, 2012

Zen, The Fence and The Pump

Folks, I know what happiness is.

Not to discount the blissful life that unfolds with a well-chosen spouse, a warm circle of friends, the love of family. I have those happinesses firmly in place.

Instead I speak of the dreaming, the yearning, for those things I have not and will damn well get. Even if I have to drag myself over hot asphalt on bloodied stumps. You know what I mean. It’s the “if only” proposition. If only I had this thing, then whole worlds would open up to me. The thing is the portal to possibility. I am as yet unfinished, feeling around blindly in the dark for the door to completion. Since self-improvement is my mantra, the tools for this constant series of adjustments must change from time to time.

My garden, for example, was once my dream and my yearning. I have it now, have had it for several years. For the first two years I was able to plant it, weed it, and care for it, though only to a limited extent. For the past two summers I’ve been physically unable to do any of those things. But that is beside the point.

Conceptually, it is far from being the garden I had dreamt of. It is incomplete, and worse than that, it is a bloody eyesore. The backyard perimeter is skirted by no less than four different kinds of fencing, none of which hide the neighbor’s backyard. The four-foot high chain link fence is a hideous and inadequate backdrop for the Asian-flavored designs I have created with two varieties of hosta and a tall, mature burning bush in the center that I have carefully pruned to resemble a bonsai tree. If only I had a six-foot high black bamboo fence behind this restful tableau, my garden would be complete.

The fence problem is easier to solve than the second one, however. My body. Know that I am quite realistic about this. I do not yearn for a cure. I’m not delusional. I will soon get surgically implanted with a baclofen pump. This device, though it will not make me bionic, climb mountains, or run marathons, will relieve my spasticity and pain without making me so weak I have to ask my husband to cut my meat for me.

The danger, the complexity, of this second problem, which makes it less solvable than the fencing, is what I might do with the possibilities of the pump in my mind. To be free of weakness, pain and stiffness I equate with the ability to build strength and endurance. I could work my garden again, I might start thinking, plant more dianthus, dig up and move some lilies, weed the hydrangea bed. My dream could extend to the grand notion of taking long walks around town, breathe in the heavy fragrance of tree sap, stride across uneven sidewalk concrete without thinking about my feet, jog across the street to peer into store windows. The way I used to before the MS. But this is magical thinking. And it is dangerous.

Zen is partly about realizing one's selfhood, identifying what we are attached to and then letting it go. I've done plenty of this over the past couple of decades, led a self-examined life and explored my spiritual side, but I am a negotiator and a skeptic. Certainly I can circumvent the unreasonable expectation of completely restored body function and still preserve the yearning for a thing not yet fully realized?

Ever since the flare I had in 2009, the one that left me with weakness, spasticity, bladder and balance problems, dizziness and vertigo, fatigue, the need to use a cane, I have spent nearly three years working up to dreaming these dreams. It was a sort of bliss, a consolation, but it has been replaced with frustration and a kind of smoldering anger. I’ve been sidelined for too long and in so many ways, more ways than I can address in this piece. Action is what I yearn for now.

For me, most things have an expiration date. Dreams, happiness, sadness, love, hate, success, failure, inaction, and yes, disability, they all grow stale and need to be replaced or rejuvenated. A pump and a fence are my next new hope, a fresh dream of beauty, form, and function. I’m still an artist and I still dream like one, sidelined or not.

Thursday, February 16, 2012

News Round-up: How Disease Theories Have Us Running in Circles

The past few years have been busy ones for researchers. Racing to reveal the mechanisms of Multiple Sclerosis, disease theorists have put forth imaginative, thought-provoking, and sometimes contradictory statements.

Let us review:

1. Multiple Sclerosis is an autoimmune and neurological disease of the CNS.

2. It is not an autoimmune disease, it is a vascular disease.

a. CCSVI: Restricted veins in the neck prevent blood from draining properly, leaving iron deposits and causing myelin and nerve cell damage in the brain.

b. Faulty lipid metabolism: Not every MSer has CCSVI, so it’s not that. Rather, it is a condition akin to clogged coronary arteries and atherosclerosis. Plaques form in the brain and spinal cord from oxidized LDL.(See: http://www.news-medical.net/news/20111223/Faulty-lipid-metabolism-may-cause-MS-says-forensic-anthropologist.aspx

3. Toxicity from heavy metal deposits, mercury being the worst offender. Remove amalgam fillings and detoxify your entire body. Since trace metals are found in everything, think “bubble boy.”

4. Smoking. If you have ever smoked, your risk for MS increases considerably. However, quitting smoking has not been proven to affect your disease course. So if you are or have ever been a smoker, it’s too late. This study only serves to shame you.

5. Vitamin D deficiency. Get some sun and take a daily D3 supplement of 1000 or 2000 or 4000 or 10,000 IUs depending upon which study you read.

6. It is a virus (not to be confused with being triggered by a virus).(I know I read this somewhere but can no longer find the article)

a. No, it is caused by herpes virus 6, a.k.a. Epstein-Barr.

b. No, it is triggered by herpes virus 6 and any number of other viruses including the common cold.

7. You are eating too much fat (see 2b above). Go on the Swank diet. Take a statin to reduce your LDL.

a. Statins have been shown to inhibit demyelination in mice and provide neuroprotection and neuro repair.
(See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2811338/)

b. Statins have been shown to inhibit remyelination in mice, having an overall “deleterious” effect on myelin repair in EAE animal models.
(See: http://www.sciencedaily.com/releases/2009/05/090526094253.htm)

8. You need more fat, notably Omega-3 fatty acids, which the body cannot produce on its own. Take generous amounts of evening primrose oil and fish oils.
See: http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=721)

9. Stress. If you have a life and it is unbearable, do yoga and don’t talk to your mother-in-law. If you don’t have a life and that bothers you, then get one.

One theory that bears mentioning and that has been on the books since time immemorial:

The proposition that we, as sinners, are being punished for displeasing the deity of our respective cultures. I excluded it from the list because it is not a product of scientific research—yet.

And so, my friends, if there is a theory near and dear to your heart that is not on the list, feel free to add it along with your thoughts.

Sunday, February 5, 2012

No New Lesions: No Problem?

Recently I received the results of my latest MRIs. The nurse called me to discuss them and relayed a message from my neurologist that went something like this: "No new lesions--that's good! Your recent symptoms are not MS-related. See your PCP for follow-up."

Huh? I was stunned by her assessment. I have been suffering from worsened neuropathic pain and increased spasticity, and she has been treating me for those symptoms with great success.

My first thought was: What would my PCP do for me? Treat the symptoms similarly and give me a PT order I can't use because the increased dose of Baclofen I'm taking makes me so weak I have to use a shower chair and can't walk through a small grocery store without sitting on a shelf in the dairy case to rest.

My second thought was that I need to educate her on how my disease has acted. I had a very long and permanently disabling flare back in '09 that rendered me unable to walk without a cane and which required me to start taking meds for spastic bladder and limb spasticity--and there were no new lesions on those MRIs.

Last year's MRIs showed four times more brain lesions than I had in '09--but with no accompanying symptoms.

Last July I was treated for a flare and returned to baseline. I had a couple of good months, then the pain and spasticity worsened--and that brings us to this most recent set of MRIs: No new lesions.

This is how it goes with MS. Shall I elaborate on this when I see her in late February? I assume she reads the same studies I do. There are studies being done right now using high-powered 7T and 9.5T machines that are picking up cortical grey matter damage seen previously only during autopsies of old MS patients whose brains were sliced up and analyzed. These findings made scientists conclude that cortical damage only occurred in the late stages of the disease. Now, these high-powered experimental MR magnets are catching lots of cortical grey matter damage in younger patients early in the disease course.

Another study being done in Miami by Dr. Jeffrey Horstmyer uses 3T machines that employ double inversion recovery sequencing that also picks up cortical grey matter damage. This sequencing program can be incorporated into our 3T machines--but it would be costly and require special training for techs and radiologists to use and to read them.

In addition, that 1.5T machine used for my MRIs wouldn't pick up very small, scattered areas of inflammation.

So, MRIs don't tell the whole story. Who knows what's going on in there!

I don't want to patronize my neurologist--but I must refute her conclusion somehow. I don't know whether she's really trying to bounce me back to the PCP because she simply doesn't know what to think--or whether she's just very conservative and isn't keeping up on her reading.

How does your disease act? Do you often have flares without new lesions? Or develop new lesions without any clinical presentation? How does your neuro react to these findings?

I welcome your feedback on this one. So, bring it on!

Multiple Sclerosis Unplugged Online Radio by Multiple Sclerosis Unplugged | Blog Talk Radio

Radio interview program with Hosts Deanna Kirkpatrick and Stu Schlossman, two MS patients who interview a variety of guests about MS issues that concern all of us.

Visit the site and listen to archived broadcasts--and check for alerts about new shows coming up. A must listen!

Saturday, February 4, 2012

MSLOL Radio Online Radio by amygtz | Blog Talk Radio

MSLOL Radio Online Radio by amygtz | Blog Talk Radio

Folks, this is a fab online radio show featuring Amy Gurowitz and Deanna Kirkpatrick, two MS patients/advocates who interview guests about all facets of our disease. I was a guest panelist on the show about SSDI and our experiences filing a claim.

So get on site and peruse the archived shows--and watch for alerts on upcoming shows. It's a must hear!

Kim

Friday, January 27, 2012

Waving the White Flag: A Turn of Praise

Okay, I give.

This is what I will tell my neurologist in late February. A week ago, I reported an increase in pain, all kinds of pain: Musculoskeletal, neuropathic, existential, do-something-doc-even-if-it’s-a-cyanide-capsule-I’m-not-feeling-too-picky despair.

But that’s not all. Muscle spasticity; need I elaborate? You know the ropes on this one. You sit for a length of time, an hour, perhaps, and when you stand up, your legs suddenly stiffen and you go up on your toes, lurching to and fro like a palsied bantam rooster.

Though I usually set my course straight ahead for the door (the ultimate goal being the kitchen where there is some very strong Starbucks espresso roast), I wind up making a sharp right into a wall of book shelves. The titles that usually cascade off the shelves and onto my bare feet include Jokes and Their Relation to the Unconscious by Sigmund Freud. I won’t even go there.

I’d gotten away with 20 mg a day of baclofen for two years, only doubling up on days when the spasticity worsened—and those days were few and far between. Except for my last two weeks in physical therapy a year ago, when my order ended and I no longer enjoyed the luxury of getting professionally stretched for 30 minutes prior to therapy. It took only one day for my legs to seize up after I stupidly decided to ride the recumbent cycle. Quickly I rose to the level of my incompetence. I stopped showing up for my three days per week workouts with Bill, my retired pro weight-lifter turned P.T. I think Bill would have understood. Or he would have clocked me on the head with a hand weight, I’m not really certain. After all, it wasn’t his idea to ride the recumbent cycle.

Thus began a vicious cycle of trying to do yoga at home, only to spend the next few days with horrific stabbing pain in my groin, pelvis, and thighs. Then I would up the baclofen for a day or two to relieve the pain—and become too weak to hold a yoga pose—for which I would then cut the baclofen to 20 mg for more strength—and wind up injuring myself again. I stopped trying to exercise after that. No pain, no pain. Simple.

Two months ago I noticed that 20 mg of baclofen just wasn’t cutting it anymore. I took 30-40 mg for relief and then decreased the dosage as I usually had, but I couldn’t tolerate the stiffness, pain and cramping that had suddenly spread to my arms and hands.

My spinal issues worsened as well. A month ago, when all the pain was at its peak, my neck pain (compliments of a herniated cervical disc, spurs, and nerve compression) suddenly hit such a high pitch that I began to pace the floors, my mind racing in agony. None of my old tricks worked anymore, not the heating pad, the stretches, not even Vicodin, which just made me nauseous. I almost went to the ER, but I possess a Stoic gene and it demanded that I try one more thing: Go to bed and lie down on that memory foam contour pillow. I did, and after two hours, the pain was quiet enough to let me sleep.

I won’t even go into the mid-back and lumbar pain, nor will I whine about the acute stabbing pain in the groin and pelvis that began to pop in once a month or so the year before last, as though the Pain Police had decided to conduct random visits to make sure nobody in my household was feeling well for too long.

And so we come to the neuro appointment. Wouldn’t you know it, as soon as I made the call for an appointment, I began to feel better. I mentioned this to her at the beginning and joked that I should have called her a month ago and saved myself a lot of pain. She laughed a lot at this, we had a nice little chortle together. “Yes,” she joked back, “give a ring and tell Laurie you’re just calling for the pain relief.” We’re getting off to a good start. Laughter does heal—for a while.

After I read off the litany of symptoms I had suffered since my last visit, she prescribed Lyrica for the neuropathic pain and gave me a new script for baclofen with a larger dosing schedule. As of now, I am so weak from the 60 mg of baclofen and so dizzy from the Lyrica that I walk with my body bent at a 90 degree angle, crashing into furniture and doors, stepping on my little dogs’ paws, and spending most of my day in a chair in front of the computer—which exacerbates my neck pain. I cannot cook an egg without sinking into a squat. I cannot shower without sitting on the faucet to rest.

My neuro also reviewed my willingness to get the intrathecal baclofen pump and recalled that another of her patients had tried titrating up to 100 mg a day of the oral stuff and finally gave in, having been rendered nearly incoherent and quadriplegic in his ability to communicate and to move. Having had the pump surgery, he is now dancing down the streets and provides speech therapy to stutterers, and can’t believe he waited so long. Hm.

She also ordered three MRIs and reviewed my willingness to take Gilenya. I will wait until my MRI results come in before I consider this step, but I’m fairly certain what my decision will be. I can’t ignore the evidence. My symptoms are worse, and if the lesion load has increased, well…

And so, my dear friends (you are indeed dear for sticking with me through all the dense narrative!) I give. I see pump surgery in my future—and a new disease-modifying therapy—and this is the topper—another $3,500 in out-of-pocket expenses for this new benefit year.

The treatments I once reviled as dangerous and invasive I now embrace as my next last resort to battle MS. The enemies of my enemy are my friends. And so I praise them.

Tuesday, January 10, 2012

The Andromeda Cramp

An early draft of Michael Crichton’s blockbuster sci-fi techno-thriller, The Andromeda Strain?

Hardly. That little dickens was a rogue airborne microbe from outer space that crystallized blood and paralyzed the nervous system within seconds of exposure. Nasty. Yet it mutated into a harmless state by the end of the story, sparing scientists from having to find an antidote before it drifted offshore, the rains (courtesy of DOD cloud-seeding) then carrying it into the sea where it was alkalized into eternal slumber.

How convenient. That was a cakewalk compared to, say, treating Multiple Sclerosis. Strain? I’ll show you strain, damn it. Just try living with muscle spasticity, a combination of feeling stretched on the rack and having two Sumo wrestlers sit on your arms. That codger was on to something with the sterno. Alcohol is a great muscle relaxer, as I’ve discovered many a time while sliding into a squat on the sidewalk after drinking two double scotches. The MS is still there but you care a lot less about it for a couple of hours. Alcohol doesn’t cramp your style or anything else. It’s the live-and-let-live approach to symptom management.

The crying baby, on the other hand, was downright annoying. Too stressy, crying just makes me feel worse. We must stay calm, relaxed, detached, inert, until the scientists find a way to send MS out to sea and dispatch it with a rain cloud.

Here’s one for the Wildfire team: Patient has muscle spasms, pain, spine degeneration, numbness and weakness in all four limbs, the torso, groin, pelvis and neck. Treat the symptoms. You have 96 minutes (same as in the film).

A. Lab rat given one mg baclofen and falls into a coma for five minutes.

B. Lab monkey given ten mg baclofen and laughs uncontrollably for six minutes.

C. Patient given 40 mg baclofen and feels better but is too weak to walk. Falls asleep in fetal position for 80 minutes. Wakes up and cries in pain for five minutes.

Your time is up. Operation aborted.

Damn you, Crichton! You made it look so easy.

Saturday, December 31, 2011

The Great Escape

My husband and I have a tradition: on Christmas day we go to the movies. This tradition is a preemptive gesture, a way to escape the anxiety that so often accompanies that Pavlovian phenomenon of crowding relatives into a room adorned with lights and red felt, the aroma of fresh pine boughs making us grin and blurt an impersonal “Merry Christmas” to siblings with whom we once shared a bathtub and pooped in. The surrealism is too much, honestly. Escape is not a luxury, it is a necessity.

This year we saw “Sherlock Holmes: A Game of Shadows,” a dizzying, Guy Ritchie-masculine superhero revision that employs slow-motion previews of Holmes’ fight strategies. He thinks through his moves and then perfectly executes them moments later, vanquishing his attackers. Oh, how that device resonated, imagining an action before my body attempts it. My mental previews mostly involve grabbing a bottle of prune juice from the refrigerator without dropping it. Slashing and gutting a Cossack, not so much, but the Girl Scout in me knows it’s always a good idea to be prepared. Downey's Holmes has a mind I ache for, reflexes I would kill for. His precision and reasoning are so hyper-attuned, they hobble him socially. I wish I had that problem.

My husband loves action films. I think they bring back his youth, a time when men push the limits of their endurance and strength. I enjoyed it, but my thoughts went back to a Christmas film I saw in 2009.

James Cameron’s “Avatar” is a Multiple Sclerosis patient’s greatest escape fantasy. I sat through it in tears, peering through 3-D glasses, sobbing about a thing that I’m convinced was lost on every other person in that theater: A paraplegic main character who temporarily, then permanently, escapes his broken body.

This point was not lost on James Cameron. I once heard him interviewed, and in the middle of that perfunctory press junket he suddenly blurted that he was surprised no one had mentioned the significance of having a disabled lead character. The interviewer did not respond to this, as though Cameron had suddenly lapsed into Russian. She waited a beat for him to finish his thought and then fall silent so she could pull him back to the special effects again, the problem of having to invent a new camera to shoot this kind of film. I saw a shadow of confusion, perhaps disappointment, on Cameron’s face as he relented and dutifully answered these questions. After that, I tried to watch every interview he gave during the film’s promotion, hoping that other interview would materialize, the one where he is encouraged to speak more about this character, about the disability angle. I never found one.

A disabled lead character is not new in Hollywood movies. Jon Voight in “Coming Home,” Tom Cruise in “Born on the Fourth of July,” it’s been done before. But not like this. These are stories about wounded war vets, their grief and anger and troubles assimilating back into an apathetic culture. They become activists/advocates and find love again. But they do not escape their bodies. These are stories of acceptance and consciousness-raising. The able-bodied audience feels good, relieved, in fact, about the endings of these stories. The wheelchair guy isn’t going to be miserable forever, he pulled himself up by his wheel spokes and got a girl.

The ending of “Avatar” makes the disabled audience feel good. Sully chooses life as a Na’vi avatar over one he already knows so well. His activism, his altruistic dedication to preserving a culture and its environment is a feature I consider to be a subplot to gratify able people. Somehow, it isn’t enough for him to choose life as an avatar just because it would make him happier. In the Hollywood mainstream storytelling ethos, cripples are too damn selfish if all they want out of life is a perfectly functioning body. They must also save the world, somebody’s world, it doesn’t matter whose, just so it isn’t all about self-gratification. An able-bodied moviegoer’s ultimate escape fantasy is all about the salvation of the world. They want somebody to fix it so they don’t have to. The disabled person just wants to walk again. But we cripples do have an advantage. We remember the time when we walked away after seeing a movie (without limping) and felt gratified by mere world redemption. I can't expect an able person to empathize with the mere act of breaking free from a shredded nervous system.

The most memorable part of “Avatar” occurred much sooner in the film. The first time Jake Sully enters his avatar body, he tries out his legs, quivering and falling like a newborn fawn. He crashes outside, walks, then runs. I am right with him, inside that body, feeling the joy. When he awakes in the pod and sits up, realizing his legs are once again useless, his reaction is spot on and my tears flow anew. It is an understated reaction, a quick glance at his legs and a subtle look that passes across his face. Only a disabled person would know how accurate, how convincing this is. I still wonder about the discussions Cameron and Worthington had about how to play this scene. They knew, I keep thinking, how did they know? It would have been so easy to lapse into sentimentality, overplay the grief and anger of having wakened from a dream in which the body has no affliction. I’ve had such dreams and awakenings; Sully’s reaction matched my own, nuance for nuance.

When I watch Robert Downey, Jr. move like a bionic Victorian comic book hero, when I thrill at Sam Worthington’s journey out of disability, I suppose one could say that Bobbie and Sam function as my avatars. For two hours, through them, I have been whole again.

Thursday, December 22, 2011

Denying Death: Why I Can't Go There

It is hard to read an obituary or hear a story about someone’s demise without feeling a strong kick in the stomach, that visceral reminder that I am alive and intent on staying that way.

I read a chart recently titled “Lifetime Odds of Death from Different Causes” with ratios displayed near bars representing heart disease (1:5), cancer (1:7), car accidents (1:100), drowning (1:8,942), air travel (1:20,000), fire or smoke (1:1,116), tornado (1:60,000), lightning (1:83,930), and venomous bites and stings (1:100,000). Leading the pack was a category called “Any Cause.” It held the worst odds at 1:1.

At first I laughed out loud at the absurdity of including an obvious fact in a chart that emphasized such exceptional events. I read the chart several times. Each reading produced the strongest reaction to “Any Cause, 1:1,” first with a giggle, then a smirk, followed by a smile, a lingering gaze, and finally, I fixated on “Any Cause, 1:1” and forgot to read the rest.

It is easy to blow off natural catastrophes, manmade mishaps and disease; I am able to imagine most of these as experiences I can survive. The possibility of survival categorizes them as life experiences. Life experiences become great stories.

Not so “Any Cause.” I was entrapped by it as though in a maze with no way out. My rational mind knows it is imminent but my imagination cannot process it. That is because death is not a life experience. The many narratives I grew up hearing and repeating confounded this idea. I want a good death, an easy death, in my home and surrounded by loved ones. If I get diagnosed with Alzheimer’s I’m going to take my own life before I lose my mind completely. These narratives address the dying, not the death.

The impasse, the brick wall against which my imagination shatters is in no little way a construct of my belief that there is no afterlife, no loving deity to greet me at the end of the tunnel. I decided long ago that the large mammals I saw scattered along the roadside in various states of decomposition were simply evidence of my impending fate. I am comfortable with this notion and have no fear of that kind of finality. But the storyteller in me writhes at the prospect. I want to be able to report back.

My father was a great storyteller. When I was a child, he regaled me with tales of his intrepid youth in New York City during the thirties and forties. He was also a notorious gossip who entertained us with juicy details about his many customers in the beauty business and his gigs as a jazz musician. In March of 2008, he spent five days in hospice care, enough time for us to bring him a steady stream of visits from friends and family. It was both a party and a death watch. When he lost consciousness fourteen hours before taking his last breath, I already knew that this was a journey he couldn’t tell me about afterwards. But the knowing is not the same as the wishing.

Would I feel less troubled if I believed in a utopian heaven where there is a static and eternal bliss? This idea troubles me more. Not so much because it creates a paradox in erasing the necessity of the word “death” since it is portrayed as the next “life,” and, surprisingly, not even because “life” is by definition a thing that cannot persist indefinitely. Even if I could accept the premise that “afterlife” does not follow the rules of quantum physics, it is still a place I wouldn’t want to inhabit, simply because I’d lay odds that there is no writing there. No striving (racing against time), nothing to push against (no fear of death), no wondering (about the mystery of life and death), nothing to inform the imagination (because we are brain dead). The possibility of finding Christopher Hitchens, Henny Youngman, Larry Gelbart and Oscar Wilde inert and dazzled and enfolded in a cloud makes me break out in a cold sweat. Worse still, if there is no writing in the afterlife then none of them will give me his autograph.

And so I circle back to the thing I know for sure. When my father was dying, he told us a surprising thing. Though he was in hospice care, he said that he wanted us to do anything necessary to give him even a few more minutes of life. He had signed a do not resuscitate order, but that is not what he meant. I watched him fight death for five days, slumping in his chair and then suddenly sitting upright. He would say aloud to nobody in particular “No, not yet, I’m not ready.” On the fifth day, at 7:30 in the evening, his exhausted body gave in. “You can take me to the futon now,” he announced, “I want to lie down.” He lay on his back. My father never lay on his back, he had a lifelong phobia of suffocating. But there he lay, not suffocating, growing more peaceful and still with the passing hours as I watched over him, slipping morphine under his tongue every hour or two.

I did not experience my father’s death. I saw him in death and later, as a bag of ashes. But that is not the same thing. His love of breathing, the glow of contentment with each moment he remained sensate, this is all there is, all that is worth knowing.