Doc, It Hurts When I Do This...

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

2012-02-16T15:57:00.001-05:00

The past few years have been busy ones for researchers. Racing to reveal the mechanisms of Multiple Sclerosis, diseases 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.

No New Lesions: No Problem?

2012-02-05T13:10:00.001-05:00

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

2012-02-05T00:19:00.003-05:00

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!

Multiple Sclerosis Unplugged

2012-02-05T00:14:00.004-05:00

MSLOL Radio Online Radio by amygtz | Blog Talk Radio

2012-02-04T12:50:00.002-05:00

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

Waving the White Flag: A Turn of Praise

2012-01-27T23:15:00.004-05:00

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.

The Andromeda Cramp

2012-01-10T22:25:00.000-05:00

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 onto 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.

The Great Escape

2011-12-31T14:53:00.002-05:00

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.

Denying Death: Why I Can't Go There

2011-12-22T17:22:00.001-05:00

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.

A Problem of Faith

2011-11-24T10:01:00.000-05:00

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.

Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.

The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.

When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.

The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.

The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?

Walk This Way

2011-10-21T11:30:00.003-04:00

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

PTSD: A Head Case Study

2011-09-16T20:51:00.010-04:00

I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.

I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.

Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.

Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.

It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.

I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.

Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.

I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.

Strange fruit

2011-05-07T14:27:00.003-04:00

Spring traditionally yields those tender beginnings of garden life. This week is no exception: leafy tubes of hosta, serrated foliage of the daisy, spiky leaves of lily. My old friends have returned and I sit on the deck smiling at them all like an adoring fan with a front row seat at the Peristyle.

This morning revealed an unexpected guest had joined my backyard reunion. Behind the latticework surrounding the bottom of the deck, my husband spied two large black tote bags filled with notebooks and insurance contracts, a spectacle case with a pair of women's designer eyeglasses, ballpoint pens, a small case of business cards, and a calculator. Since the paper looked white and unspoiled, we figured these supplies had not spent the winter there--and had in fact spent less than twenty-four hours in their hiding place.

Who put them there? Why didn't our two dogs bark their heads off at what must have been a fair amount of noise in the back of the house whilst the lattice was being pulled away?

The business cards revealed the name of this woman who was apparently an insurance agent with several contracts signed and ready to be processed. My husband thought we should call her, but I thought she might feel threatened, so I insisted he take them to the police station and let them deal with it.

Did she walk the neighborhood and glance over the fence at our backyard where, overcome with the joy of spring, she decided in a pollen-laden cloud of fecundity to quit her job and dispose of her worldly burden? Was her car vandalized and the contents hurriedly stowed under our deck?

I was going to end this by writing that we shall never know--but hubby just this moment informed me that she came to see him minutes ago and explained that her car had indeed been vandalized! A laptop had been stolen, but she was grateful to have recovered the rest.

She added that the backyard looked very nice. The vandals had no comment, as they are still at large. I guess spring inspires people in very different ways.

Choosing an Epitaph

2011-03-12T22:55:00.000-05:00

After many years and false starts, I have finally decided upon my epitaph.

It came to me while watching Carole King and James Taylor reminisce on "American Masters" while standing in the foyer of The Troubadour, shuddering in tandem at the thought of returning in another twenty years for a final geezer perspective on the sixties folk scene. We thought as one back then, they mused in unison, but things--even wonderful things--don't last forever. They aren't supposed to. Carole quipped: "I sure don't want to play The Troubadour at 88! That just wouldn't be good."

I imagine drugs had something to do with burning a few bridges and not a few brains. Even Carole and James, in all their stubborn staying power, feel old and tired now, not quite believing they actually did all the things they remember from forty some odd years ago.

No, I am not lamenting the end of the folk scene, nor the Beatles, nor the Eurythmics, nor even Talking Heads. I'm thinking about the notes of my everyday life and the song it has become.

When I felt bored and in a physical rut with this stupid disease, I sought out physical therapy. I've always needed something to push against so I can feel my life. When the exercise got too easy a couple of weeks ago, I demanded more challenge. Bryan, my therapist, a 41-year-old student and ex-factory worker starting a second career as a physical therapist, finds things to challenge me that push me to exhaustion. He wants me to get stronger, to make the foot drop disappear. I know there won't be much of a change, but I love to pretend it will happen and that he, my Lancelot, will help make it true. He holds onto me with a tether attached to a special belt around my waist, keeping me from falling while I struggle to walk toe-to-heel. I like to think that he does this because he truly cares for me. This is a fantasy I find pleasant, as I am a little in love with him. He is attractive, capable, quiet, kind, father of two teenage boys. When I meet men like Bryan, everything is right with the world.

On my days off, I sit all day, fighting sleep. The therapy exhausts me. My husband feels sympathy and admiration for me, fetching tea and bringing me gifts. Last week, he gave me a Kindle with a cute little booklight. I am reading Ben Franklin's autobiography. When I grow bored, I play canasta with my mother and drink coffee for a couple of hours.

This is my life. It isn't what I'd dreamed of at sixteen, or at forty. I'd had plans to become a world class musician, then a world class literary novelist. I managed to become a good musician and a good writer before MS started pulling me onto the sidelines.

I'm getting less and less angry about those dreams crashing and burning. It's a storybook life, really, just not the chapters my ego had hoped to see itself in as the main character.

Oh, right, and my epitaph? "I knew it was too good to last forever."

Anatomy of an If

2011-02-18T11:26:00.000-05:00

This morning, another one of mild temps and ever larger patches of green grass showing in the backyard, I heard a robin call for the first time this season. Gazing wistfully out the back door at the dried husks of my sleeping flower beds, the sorry state of those three or four different styles of perimeter fences that need replacing, the sagging floor and roof of the potting shed, I wondered how much yardwork I'll be able to do come spring.

If a picture paints a thousand words, one viewing of this backyard melodrama would fill a booklength DIY-Project-of-the-Month Club selection.

I fear not, for water therapy has made me newly optimistic about my abilities. And now that my Physical Therapist has added TENS torture to retrain those footdrop muscles, I'm doubly so. (Torture because of the excessively high setting of electric shocks last Wednesday that sent my leg into a cramp and made white streaks appear in my suddenly bouffant hair.) If my dorsiflexion improves, the Walk-Aide device will work better. And if water therapy improves the back pain, I can stay on my feet and move around for longer periods, thus justifying the expense of a Walk-Aide.

That's a lot of ifs.

I was pleased with my new neurologist, whom I met yesterday for a long first appointment. She is a good listener, laid back, eager to treat symptoms and well-informed about DMDs. And only a mile from my home. She approves of my continuing to take Tysabri, and the new infusion clinic is also only a mile from my home. More reasons to feel good about the future.

If Tysabri continues to improve me without eventually killing me with PML, if physical therapy makes my back and legs stronger, if I can lose the 14 pounds I gained after quitting smoking, maybe then...

...I'll figure out why happiness cannot be imagined without an if...

Aquatherapy: The Great Leveller

2011-02-12T21:49:00.004-05:00

Remember those dorky one-piece bathing suits women used to wear in the 1950s and 1960s that sported a “modesty panel” across the bottom half? Maybe your grandma had one—or even, God forbid, your mother. The ones that we hip kids silently laughed at in naïve bewilderment as we pulled on our bikinis and tank suits. Back then they seemed to be the ugliest most unflattering thing a female could put on her body to go swimming. That extra flap of material made a woman look like a kangaroo with a pouch for babies. Never would I be caught dead in one of those marsupial costumes.

Well, for the past two weeks, I have been wearing one. Okay, lots has happened between those days and the present: the passing of no less than four decades, disease, weight gain, disability, you get the picture. I stopped wearing bathing suits, stopped swimming and sunbathing circa 1988. Never imagined I would take a dip ever again.

So, back to the modesty paneled suit. I borrowed it from mom, who occasionally goes to estate sales and buys up the high-end clothing of dead rich women, the last load of which included some very nice one-piece bathing suits. The suit is colorful and slimming, albeit a size too small for my newly-fatted ex-smoker’s body. But it’ll do. And here’s the kicker: I’m actually grateful for the modesty panel. Something bizarre has happened to my figure in my 53rd year: a sagging, poochy pubic area. Geometrically speaking, the Pubic Bermuda Triangle. It sticks out between my upper thighs to such an alarming degree that I considered wearing a jock strap. Now, gender confusion was not an issue I had anticipated at this stage of life.

Thank goodness for the modesty panel. What looked kangaroo-like to me at twelve now seems miraculously to restore my femininity. And though I only parade around the therapy pool in front of postmenopausal women who are, for the most part, in worst shape than I am, I still feel self-conscious and ungainly—until I lower myself into the warm water and start my leg raises and lunges.

The wonderful thing about aquatherapy is that I can do exercises in the water that I cannot do on dry land. I feel light and my legs lose their heaviness. I highly recommend aquatherapy!

Soon I will be test-driving the WalkAide, a Functional Electro Stimulation (FES) leg orthotic for correcting footdrop. Check back for updates on my new neurologist appointment this Thursday and more news on my PT and FES trial. Lots of new stuff happening! Woo-hoo!

Getting "Insurified:" The Shortest Distance to Procuring Medical Debt

2011-01-14T14:47:00.001-05:00

Ah, the good old days…

I feel like it was just yesterday that I enjoyed free health care, including free Tysabri infusions, as an uninsured MS patient on Social Security disability but no Medicare.

Wait a minute—it was yesterday! Or practically so. After marrying Mark in December, I received one January morning a blue and white plastic Blue Cross insurance card bearing his name. I now have coverage under hubby’s insurance and it’s time to tell the world. Or at least the docs at my charity clinic and the people at Biogen idec who gave me a free ride on Tysabri. Everything must change, that much I know.

The Blue Cross people trotted out my benefit summary on the phone; mainly, my coverage amounts to an 80-20 split plus a $250 deductible. My face went white as I calculated twenty percent of the $16,000 a year cost of Tysabri. Surely, I thought, any service provider who has a contract with Blue Cross will accept the 80%, waive the deductible, and call it good. One customer service rep told me they would, but a second one told me I might be responsible for the deductible and co-pay. I tried to pin them down on whether or not I’d be billed, but nobody seemed to know for sure.

Next I asked Blue Cross for a list of in-network infusion clinics I might use. They were stymied by this request, but fifteen minutes later I was given a list of places to call. They turned out to be specialty pharmacies, not infusion clinics.

Welcome back to the wonderful world of health insurance.

Next I called the charity clinic and asked the receptionist if I should find another neurologist now that I have insurance. “Yes, please do,” she lectured, “that way you will make room for people who have no insurance.” I thanked her and hung up, hoping that I hadn’t taken up too much of her valuable time administering to the poor and suffering, now that I was no longer considered part of the flock. After a few hours, it struck me that I really should have talked to my doctor. You don’t just walk away from a specialist you’ve been seeing for a serious disease who probably would like to coordinate the changeover in your therapy.

A reminder that I must always be my own advocate and demand the proper care.

The Tysabri people put me on a different assistance program, one for the insured among us who are getting fleeced by high co-pays and deductibles. My cost is $10 a month, which is affordable, the best news I’ve had thus far. But, of course, they won’t cover the infusion center fee. I’ll have to ask the MS Society for help with that.

Next week, I will tell all about my adventures in procuring a new GP and neurologist, a new infusion clinic, and what my part of the cost will be for real.

Yule thank me later...

2010-12-22T18:29:00.003-05:00

This may well be the most happening yuletide I’ve ever had. My marriage on December 7th tops the list of highlights this season, naturally, followed by the impending arrival of my youngest sis, Deidre, and my errant brother, Bob, next week. This will be the first time in ten years that all four siblings will be here in Michigan, in the same room, celebrating together on Christmas Eve. Absent for the third Christmas will be my father, who died in March, 2008. But mom is still alive and well, and that makes five of us, all of whom are, individually and collectively, happier than we have been in decades. Not bad.

Such joyous declarations could be enough, and maybe should be enough to report during such blissful times. If this essay were, say, more along the lines of a Hallmark Channel movie, I would add some soothing background music, a gauze filter, Roma Downey in an ermine collar and wicked fine backlighting, and call it good. Roll credits, fade out, enjoy a lingering glow of peace and goodwill toward humankind.

But we inevitably waken in a chokehold of grief or avarice. We still want what we don’t have and we just can’t seem to help it. Whether it is something we once had and then lost, like a loved one, or have never had and covet with every fiber of our fake pine-scented Noel being.

For example, shortly after Mark and I married, my best friend, Elvina, and my mother, both of whom have been single for many, many years, called me in tears, lamenting their single status in a sudden relapse of loneliness and regret. “I want what you have,” they each told me almost verbatim, “I haven’t felt this lonely in a long while.” At first it seemed odd since Mark and I have lived together for four years, the marriage being a mere formality. It isn’t as though I was single and unattached like they are and then presto, I’m engaged. But, the short engagement had indeed made me blab to them about my hunt for a diamond ring, and I did spend hours flashing it and bespeaking its virtues, especially the sixty percent discount I got at J.C. Penney.

Maybe it’s my fault, I don’t know. It was my very first diamond, and there aren’t many firsts left at my ripe old age of fifty-three. I was excited, naturally, and wanted to share it with my loved ones. One thing I do know for sure is that this first diamond has opened up a whole new sparkly world to me, full of G color and VS-1 clarity ratings. Is there something about that XX chromosome that intuits at first blush that 1) diamonds are shiny and pretty, and 2) bigger diamonds are even shinier and prettier?

On December 14th, Mark planted a quick kiss on my lips and said “Happy Anniversary, honey, we’ve been married one week today!”

“Right,” I say, “can I get my anniversary diamond upgrade now?” I have rated my wedding ring diamonds at a dismal I-J color and I3 clarity. Industrial diamond merchants, I have read online, wouldn’t even buy my stones.

“No,” he stated, and walked away.

“But I want a better diamond,” I call after him.

“It’s good to know what you want,” he responds, beaming at me with that I-adore-you-when-you’re-like-this grin.

“My dad used to say that to me when I was a kid,” I shoot back. Mark reminds me a lot of my father, one big reason why I love him. And one big reason why I loved dad was that he never shamed me for my avarice.

“It’s good to know what you want,” he would say when I’d whine about the candy or the doll. “How could you get through life without knowing what you want?”

I want, therefore I thrive. Smart guy, my dad.

Matrimony

2010-12-07T22:44:00.001-05:00

This morning I hand my cane to a security officer at the Lucas County courthouse in Toledo and hobble across the threshhold of the metal detector. "Can you make it through without your cane?" he asks.

"Don't touch the sides of the scanner ma'am," his buddy cautions. Steadying myself with a handy wall is always my first impulse, but I successfully restrain myself and pass the wand scan with nary a beep. Close behind are my fiance, Mark, my mother, and Barb, a close family friend. Everyone glides through except my 78-year-old mother, who spends minutes beeping and getting frisked at all sorts of odd angles. "Do you carry a knife, ma'am?" the security guy asks mom. She doesn't remember. After emptying her purse, they confiscate a yellow swiss army knife and drop it into a plastic bag.

"I guess I do carry a knife," she tells me as we walk to the Marriage License office.

The office is empty. Tuesday, Mark points out, is a very good day to get married in Toledo. It takes just fifteen minutes and fifty dollars in cash to get the license. "Do you plan on getting married today?" the clerk asks. "If you are, the ministers are located to the left of the elevators." We head to the elevator but see no office with ministers there. Just a man in a black suit holding a book.

"I'm guessing the guy holding the bible is the minister," Mark says. We walk up to him and he glances at us tentatively. "Are you getting married today?" he asks. When we make clear that it is our intention, he relaxes and ushers us over to a square of indoor/outdoor carpeting for the ceremony.

"Do you have a ring for the bride?" he asks in the midst of our vows. It is already on my finger, a diamond bridal set from J.C. Penney purchased last Friday at 60 percent off, a too-small ring that the local jeweler resized for me yesterday for a small fortune. I haven't taken it off since. "I now pronounce you Mr. and Mrs. Huff, congratulations," the minister tells us. It is over in less than three minutes.

On our way out the door, mom stops at the security desk to pick up her knife. She shakes her head at it. "Didn't know I had a knife. Glad I do, though." Outside, Barb takes out a small bag and throws handfuls of rice at us. "Thanks," jokes Mark, "I'll be picking rice out of my butt crack later tonight."

It is a blustery, twenty-degree day with a stiff wind blowing down our necks. The walk to the car is blissfully short. We drive to Olive Garden and get seated while Mark parks the car.

"Will you be expecting anyone else?" the hostess asks me. I've lived with Mark for four years, first calling him my boyfriend, then this past year, my partner.

"Yes," I say, "My husband."

Block and Tackle

2010-11-24T21:06:00.000-05:00

Tomorrow is Thanksgiving, and, as happens about once every four years or so, it is also my birthday. This one is no milestone; turning 53 feels about as anticlimactic as turning 52 had felt and how it will likely feel next year as I migrate towards 54. For a change, aging is not what occupies my thoughts. And, though the next few weeks will mark the 12th anniversary of my very first Multiple Sclerosis exacerbation, MS is--also for a change--not the primary subject of my brooding. At least, not directly.

Indeed, advancing disability over a dozen years and the eventual end of my work life placed hurdles that had regularly distracted me from exploring an inner life I’ve held precious and elusive. My writing life happened only during interludes of not-working time: a period of unemployment, a weekend, an evening. The longing for more writing time-life became shrill and mournful, so much so that the longing itself provided something solid to push against as I cleared each distracting obstacle, salaciously beckoning to me at the finish line so I’d complete the race before some no-talent hack tackled me. That is what I am missing. That palpable, shrill thing to push against.

Now, my memoir remains stalled at page 52, awaiting the creation of just the right device that will ensure a slot on the National Book Award short list; my idea for a second novel remains an abandoned but once much-loved embryo waiting for in vitro fertilization (this will require a trip to Las Vegas--seriously, for research!).

That shrill thing was pride, the mournful sound was a clock ticking away my mortality. Pride and fear of death, have I none now? What has changed? Has anything changed? Or is this simply the new rhythm of my life? Writing was, fifteen years ago, a product of constant inspiration. Eventually the inspiration deserted me, and it became a thing of craft and hard work. But now, in the absence of self-imposed discipline and rigor, how will it happen? Will it be like sitting in an amusement park boat, bumping through the funhouse, when, all of a sudden, I scream gleefully, knowingly, at the cackling skeleton that just took a dive at my head?

Wouldn’t it be nice--for a change?

Slow burn: the last chapter

2010-10-08T19:38:00.000-04:00

Persistence, in my experience, has always been a reliable substitute for confidence and inspiration. It pays off big on the short odds when the timing is just right--and timing is everything, as we have all heard a million freaking times since leaving the cradle.

So what’s the point, that all clichés are true? Yeah, probably. I don’t know that I had a point, except that after many failed attempts to quit the devil leaf this year, I started a tobacco treatment plan on August 2nd, and as of August 18th, I have been smoke-free. I was such a hard case, a two-pack-a-day smoker. How did I do it?

Chantix, mostly. And a single counseling session with Holly, a tobacco treatment specialist who was trained at the Mayo Clinic. I was allowed to smoke for the first two weeks on Chantix while preparing myself for quit day—the 15th day—in various ways that resonated personally. There wasn’t really much I needed to do except move the ashtray out of my office and onto the back deck. The drug itself made the cigarettes taste bitter and unappealing, rendering the whole experience less satisfying with each passing day. I stopped smoking on day 13, two days before my official quit day.

Shortly after quitting, I stopped taking Chantix. As effective as it was, the side effects made it impossible for me to stay with it for the additional 90 days recommended by the treatment program. My moods see-sawed, I slept through most of the afternoon each day, nighttimes were continuous roller coaster rides of absurd, manic dreams followed by hours of wakefulness, and I developed chest pain that turned out to be a new symptom of the acid reflux I had earlier gotten under control with Prilosec. Who would want to keep that up?

Nowadays I have slight cravings for a cigarette, but they are passing thoughts from which I can easily distract myself. With food. I have gained eight pounds since August. My size tens are beginning to grumble under my widening girth. But I just tell my mouthy vanity to put a lid on it for the time being. If I gain 100 pounds, that, according to modern medicine, would justify going back to tobacco. The health risks caused by extreme obesity would somewhat outweigh the risks caused by cigarette smoking.

So, whenever my nicotine-deprived brain nudges me for a drag, I appeal not to God’s grace but to the infinite wisdom of science: “Just 72 pounds to go, genius. . .”

AMC’s “Rubicon:” A River of Troubles

2010-07-26T13:20:00.008-04:00

An enthusiastic fan of AMC drama series, I eagerly dove into the sneak peak episode of AMC’s “Rubicon” that followed the season three premiere of “Mad Men.” What I viewed was an endless sweep of Manhattan cityscape running behind several characters that are so brilliant in their jobs as intelligence analysts that they are doomed to either death or madness. This viewer is rooting for death, and a quick one.

Set in a government think tank, a painfully anticipated turn in the plot arrived shortly before the “mysterious” death of Will Travers’ best buddy, David, in a train accident. Intelligence savant Will, a phlegmatic fount of useless information, has discovered that a certain crossword puzzle has appeared in several different newspapers of late. His deep powers of analysis peel back layers of meaning in the clues—which he does not share with us. In fact, nothing is shared with us, and I am amazed that I’ve stayed with the show this long. But hope surfaces when Will shares these newspapers with David, who casually blows it off in Will’s presence, then in private, knits his brow as a signal to us that he is actually deeply troubled by this information. Whatever it is. We don’t know why it is so significant. We don’t know why anything is significant. We are beginning to wonder why AMC fell for the pitch for this series.

After David’s death by train derailment, Will brings the same newspapers to David’s chess-playing friend, Ben, a retired analyst who has gone round the bend. With palpable gravitas, Will hands over the newspaper puzzles to Ben.

“Have you ever seen this kind of thing before?” Will asks Ben in a hushed voice. Ben gives the puzzles a cursory glance.

“Hm, the same puzzle appears in several different papers,” Ben says. “No, that’s a new one on me.”

At this point, my partner, Mark, turns to me and says: “Um, isn’t that called syndication?” We are thinking the same thing and we can’t help snickering. Will Shortz, a highly respected puzzle master, whose crosswords appear in many newspapers, may be the mastermind of the next terrorist attack on America! It’s all there in front of us, why can’t we see it? Worse still, every Sunday morning on NPR, Will Shortz and his cohort, Liane Hansen, brainwash us with word challenges across the airwaves! What a triumph for the educated elite-hating conservatives! They’ve tried to tell us for years how reading the dictionary would corrupt our minds! Finally, proof!

One is immediately reminded of John Nash in “A Beautiful Mind,” who, in a paranoid schizophrenic haze, filled his rooms with inked up newspaper articles, reporting his analyses of Cold War communist conspiracies to ghostly Ed Harris. But it wasn’t real. He was crazy. Still, deconstructing news items seemed more rational in that film than in “Rubicon.” Nash used the technology of his time, the 1950s, when print reigned supreme. “Rubicon” takes place in the present, but this policy institute prefers rifling through dusty books and periodicals to hacking into classified electronic files. It is not a story of psychotic fantasy. Will Travers has been presented as a reliable narrator. But his reliability is only as good as what the show’s producers share with the audience. In this age of disappearing print media, as newspapers phase out paper and ink and go online, will this towering genius finally enter the late 20th century and register for an electronic subscription to the New York Times?

This retro approach might gain some ground in atmospheric effect, but it left me thinking that the plodding revelations Will uncovers through these means might leave him (and us) far behind Caesar's marching legions, stranding us all on the banks of the Rubicon after the ship has sailed.

Reunion: The Ties that Bind

2010-07-21T15:55:00.001-04:00

How did we choose our friends in childhood? The question hovered as I made my way through the throng of classmates at my 35th high school reunion last weekend.

In retrospect, our communication skills at age seven seemed to be little more than grunts and hand signals compared to the now articulate, self-assured ease of our small talk over tables littered with memorabilia, old yearbooks, jars stuffed with the penny candies of our youth. My own friend choices had largely been those of comfort and convenience. Since I was so shy, the majority of my friendships were often initiated by a kid who was more outgoing than I and who fearlessly made the first move to break the ice: a neighbor, fellow Girl Scout, band or choir buddy. And there were the exceptions, the kids I sought out, the ones who made me forget my shyness, who taught me how to smoke and swear, or whose dry wit made me laugh my guts out.

Much of the time, though, I was acutely aware that our world was very small and I felt smaller still. A minnow hugging the edge of a rain puddle. Comfort quickly became habit. I sought out the familiar faces, the ones that lit up with recognition upon my approach. It kept me from feeling completely invisible at a time of life when I desperately sought anonymity.

After high school I threw myself into a much larger world. True to form, I clung to the edges of various puddles, occasionally jumping into a lake, even an ocean or two. No familiar faces, no history. But one thing remained the same: I made friends with those who reached out to me, allowing myself to be chosen rather than risking rejection. They were friendships made in the workplace, rarely lasting much past the migration to a different job at another company. In that sense, the adult world was a bit like high school. After graduation, a lot of my friends had scattered and mostly lost touch, moving away to a college out of state or marrying or immersing themselves in the work world. Perhaps we knew in our guts that it was necessary to cut the ties that kept us from truly growing up. Despite this self-imposed exile, however, the connection was still there in the bone and in the marrow. Unlike friends I had made in the workplace, my childhood friends and I rediscovered each other over the years and easily picked up where we left off.

To this day, my closest, dearest friends are those from childhood. As I hobbled from room to room at the reunion party, grabbing old friend and acquaintance alike (“Hi, baby,” I would coo in their ears, “so glad you’re here”), the warmth I saw in their eyes was genuine, the hug I gave was returned with equal warmth. Memory makes the words flow easily, decades of estrangement melt away. You just don’t have to work that hard to talk to a former child with whom you were also a child.

Unlike those friendships developed in adulthood, there are fewer rules among childhood friends. We more easily forgive the faults and transgressions of an old friend than those of a new acquaintance. Perhaps because we will always be children with these people, and no adult worth their salt would ever hold a grudge against a child. And though we delight in getting to know the revised adult version of these former fifteen-year-olds, we are comforted that we can, at any time, gaze into each other’s eyes and find the kid we once knew.

Slow Burn, Part II

2010-07-14T14:54:00.002-04:00

The Voice of False Promise spoke to me again last week. I borrowed some leftover Chantix from an anonymous supplier and took it for three days, hoping the drug would quiet the cravings, or, even better, like a robust program of electro-shock therapy, completely wipe my brain, robbing my memory of ever having been a cigarette smoker.

It failed, and I think I know why. This drug works by suppressing the nicotine receptors in the brain while, at the same time, stimulating a much smaller amount of dopamine than a drag on a cigarette would produce. Sort of like drinking a cup of caffeine-free coffee instead of my usual strong shot of espresso roast. Am I fooled? Am I similarly satisfied? Heck no. I have a trusting, intimate relationship with my brain chemistry and nothing has been able to break us up. Yet.

Yesterday, I sought out the services of a smoking cessation doctor. It seemed to make some logical sense to seek out a scientist. After all, if anyone can screw up your relationship with your body, it’s a doctor. What I found was a very sweet man who sat me down and told me that Jesus loves me and will help me through this. “I’m an atheist,” I told him, feeling my blood pressure spike, “and I cannot accept Jesus as my savior just to quit smoking. It would be like hiring a contract worker to fill in while my sanity goes on short-term disability, then laying him off when I get my wits about me again. I cannot, in all fairness, hire and fire Jesus.”

The doctor then shared his secular approach to quitting. It involves cutting back gradually. “When you leave here today, put your cigarettes in the trunk of your car. You probably won’t stop on the highway to open the trunk, right?” I said nothing, but knew that I would do exactly that. “When you get home,” he went on, “put your cigarettes in a really inconvenient place. Hide them in the attic or the basement, or way up high on the top shelf of a cupboard. That way, you have to make a conscious decision to smoke that cigarette.”

Again I said nothing, imagining all the ways I would easily circumvent these obstacles. I have Multiple Sclerosis, for Pete’s sake, I have lots of experience figuring out shortcuts. For one thing, I am not physically able to place cigarettes in precarious places—my partner would have to do the placement. Therefore, it would be impossible for me to reach them at all. I would simply drive to the gas station and buy a pack of cigarettes.

What did I learn from all of this? Quitting smoking boils down to willpower. There is no drug or technique that eliminates the cravings. And, after many failed attempts to quit, expecting to completely eliminate cigarettes on Day One is setting the bar too high. I will go bonkers, rebel, mow down anyone who is standing between me and a cigarette—and not look back to see if they are still breathing until after I take that first drag.

My next plan is to purchase a hypnotherapy program on CD, buy a portable CD player and headphones, play it all day long if necessary, and slowly, gradually, cut back on the number of cigarettes I smoke.

When I see my oral surgeon at the end of this month, he will ask me about my progress with quitting. I will tell him what I now tell everyone else who is breathing down my neck to quit:

If you can’t be part of the solution, then shut the hell up.

Slow Burn: Anatomy of a Smoker

2010-06-26T14:16:00.001-04:00

I have MS and I am a smoker. There, I said it.

But, this simple admission does not absolve me. For my doctors, militant nonsmokers, sin tax perps, the most pious among us, and clinical researchers who insist that smoking is a factor in developing MS, fessing up is simply not enough. I must quit the devil leaf or else face a hellish demise. Period.

Last week, my fourth attempt to quit smoking since January resulted thusly--it failed. Thanks for playing, we are sending you home with a nice parting gift: your sanity.

Poverty had provided the impetus for this latest attempt at sobriety. Two days before my social security check would replenish my account, the balance read a measly nine dollars. I can do this, I thought, my mind filling with that eery light of hope, and I won't ask my partner for the money, not even if I start chewing on my mattress. I'm stronger than this. I am! After all, look at what I have accomplished through sheer will. I wrote a novel, for pete's sake, the scariest endeavor one could face. And I did it. I drank two scotches and smoked three packs of Nat Shermans for each page I produced, but I did it, and even Yahweh would have to admit that it was good. A miracle, no less. Facing a blank page and filling it with well-crafted paragraphs is a feat few have attempted and even fewer have completed. It brought me a literary agent and a dozen laudatory rejection letters from the top editors at the top publishing houses. It didn't find a publisher, but it got read, ladies and gentlemen, by people who have published David Foster Wallace and John Updike, Lorrie Moore and Dave Barry, Tim Farrington and Deepak Chopra, Cheech and Chong. I was honored and humbled by the mere reading of my manuscript. It was enough. I can now die happily in peaceful, unpublished anonymity. I had the ear of the publishing elite for a couple of hours and received, if not their trust in my selling power, their acknowledgment of my talent.

This comfy anonymity lulled me into a new fantasy of overcoming an immoral enemy. After all, it is a literary theme with which I am well-acquainted. Here was my opportunity to live it, not just to read about it. I would receive no accolades, no glowing letter of appreciation for giving up tobacco. I needed none, I am a well-adjusted, mature woman whose challenges and failures have built a calm, sturdy character. I will, for the sake of my health, quietly eliminate a bad habit. No hoopla necessary, no pat on the back for a job well done. I am an adult, a creature who does all sorts of things it does not enjoy doing. Duty as a moral imperative is not lost on me.

The first day, I chew nicotine gum every hour upon waking and far into the afternoon. At first it is easy to choose the gum over lighting up. But by 3:30, a bomb goes off in my brain. I don't want a piece of gum, I want a cigarette and I want it now. My brain cannot hold another thought. I drive to the gas station and buy a pack, smoking it greedily throughout the afternoon and evening. I feel no guilt. Tomorrow is another day. And I have no more money for cigarettes.

The next morning, I smoke the three remaining cigarettes from the previous evening's relapse. When they are gone, I chew nicotine gum. By 11:30am, a wave of fatigue consumes me and I crawl into bed, sleeping through the afternoon. At 3:30 I awake. I want a cigarette and want it now.

But there is no more money. Frantically, I rummage through all my old purses and coin pouches for loose change. By some miracle, I assemble five dollars in quarters, dimes, nickels and pennies. Once again, I drive to the gas station on a now below-empty gas tank. If I buy the cigarettes, I might run out of gas on the way back home. I have my cane with me, but a half-mile walk back home is a very long, excruciating journey for an MSer. The choice is an easy one. I don't care of I have to crawl back home, I want those cigarettes. Some passer-by will take pity on me and offer a ride.

Back home, I tear open the pack and chain-smoke the first ten cigarettes. My mind quiets down. I can now concentrate on listening to the radio, sip my coffee, gaze at the garden, making mental notes of a landscape redesign. My mind is free to roam again, and I am happy. At peace. A smoker. I sit at the computer and compose an essay, happily puffing away.

Tomorrow, I will have the money to buy a whole carton. My absolution will have to wait until another day, when that voice filled with false promise distracts me once again. I am a mature adult, after all, polite and sophisticated enough to at least appear to be listening.