The First Year

(October 1988 to December 1989) What a whirlwind the hospital had been. People scurrying everywhere. Nurses in and out. A constant cascade of roommates who came in the middle of the night and disappeared within days.  Then nothing when they withdrew the IV needle and quickly discharged me.

Back home to an upper flat. How will I manage the stairs? Will I ever be able to get out of here and get back to my life? It was now October. The weather was changing and so had my life. I’d called the University and took an incomplete in all my classes.

I was scheduled for a five day dose of oral prednisone and told this would keep me weak. And it sure did. Each day I’d wake to the same weakness. I could barely make it from my bedroom to the living room couch. From there, huddled under my quilt, I’d look out the window onto Fredrick Street two blocks from the UWM Union. Students walked by to and from class all day. No one saw me. No one knew I saw them. It was like I didn’t even exist.

Friends and family had called and were there to help with various things like laundry and grocery shopping. But the rest was up to me. I was sharing this flat with a stranger. I’d just moved in the month before to this apartment very near the UWM campus and then went to the hospital. My roommate was disabled so she was around all the time. At least I wasn’t completely alone.

Once the oral prednisone was done I began to feel stronger. Finally I decided to give it a try. The first day I walked down the stairs and out the door. I stood on the front porch for a few minutes. Back upstairs. Exhausted. The next day, the same path only this time I went down to the sidewalk. Next day, I walked to the corner which qualifies as half a block. Next day around the block. The next week I walked ten blocks.

Each day my strength improved and it felt like a miracle. Too good to be true. I stood in awe, not believing that I’d walked all the way from my apartment to the classroom building across campus. By the first of the year I was back in class with a full load as well as working on making up my incompletes. I returned to work and class and thought I’d “recovered.”

That spring, the symptoms started again. I’d been overdoing it. Too cocky about my recovery. I took another leave from work and continued with studies. By summer, I finally quit the job and took a loan so I could finish school. I referred myself to the Division of Vocational Rehabilitation.

I had to present them with proof that a master’s degree would open doors to administrative positions which were desk jobs. I knew I needed to have a sedentary job away from the physical hustle and bustle of most social work case management positions.

Each Sunday I scoured the papers and cut out all the jobs that were administrative and that required a master’s degree. This effort was successful and the DVR paid for my last semester of tuition and books; then when I graduated and got a new job they gave me a generous clothing allowance.

I graduated on schedule in two years flat, ending 1989 with a master’s degree, a new job and hopes for a new life. By this time I was in full remission. Each day I’d wake and first thing, I’d take a full inventory of my body. I’d check what kind of symptoms I had, did I feel tired or rested. Then I’d plan my day. Memories of those dreary days in the hospital and trapped at home right after discharge began to fade.

But I knew it wasn’t over. The journey was just beginning. I was determined to have as normal a life as possible. But I also knew I had to take care of myself. That daily inventory continued and I had to make many adjustments. Instead of going to work and then out in the evening, I’d plan outings on weekends. Stay within reasonable parameters, I told myself over and over.

This whole experience put life in perspective. What’s really important? What battles are worth fighting? When it comes right down to it, believe me, there weren’t many that are worth it. And it really made sense to think of one day at a time.  In January, 1990  I began a new job with a new perspective. And I fully accepted that I had to drag this chronic illness wherever I was going.

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Literature’s Lavender-Scented Little Old Lady

Fall, 2016: First honorable mention in non-fiction category of Wiscosnin Writer’s Association Jade Ring Contest

 

The personal essay has long been one of the most misunderstood genres of the writing world. Everyone has an opinion and the discussion has reached over many decades. In our fiction dominant domain, writing that deals with thoughts and feelings rather than character, hooks and action is seen as lacking.   So it was wonderful to see Joey Franklin’s article, entitled The Critic as Artist that appeared in a recent issue of the Writer’s Chronicle.

It compares the essay to art. Citing the critical ideas of Oscar Wilde, it focuses on the importance of personal impression, contemplation and self-consciousness. But since the essayist critiques, most often about themselves, they are thought self-centered.

Franklin lists many examples of how non-fiction writing has been thought to be literature’s inadequate step child. Disparagement of the essay goes far, far back. In the 1870’s, Montaignen was considered by many as father of the genre. He called the essay a foolish attempt and warned readers not to waste their time “on so frivolous and vain a subject.”

Samuel Johnson called essays “loose”, “irregular” and “undigested.”  G. K. Chesterton referred to them as “a joke of literature.” And John Waters, in a disapproving tone, called the essay literature’s “lavender-scented little old lady.” A. C. Benson branded the essayist “a lesser kind of poet, working in simpler and humbler materials.”

But most recently, Carl Klaus a well-respected defender of the essay said: “the essay….is a highly complex and problematic kind of writing—-an enactment of thought and a projection of personality that uses language dramatically ……and that thereby calls for literary interpretation.”

Phillip Lopate, an ardent defender of the personal essay, can’t say enough about the segues and twists the essayist can employ as he winds his way around and through their own dramatic tale. Oscar Wilde would agree, judging the essay as the only civilized form of autobiography because “it deals not with events, but with the thoughts of one’s life; not with life’s physical accidents of deed or circumstance but with the spiritual moods and imaginative passions of the mind.”

Wilde calls it “the record of one’s own soul. It is more fascinating than history, as it is concerned simply with oneself. It is more delightful than philosophy, as its subject is concrete and not abstract, real and not vague.”

In this form of writing, it’s the essayist who is the main character and it’s their duty to tell their deeply personal story with as much interpretation as they can muster. When they’re true to themselves, the universal appeal shows through.

Maybe that’s why the essay is so controversial. In telling their most personal tales, the essayist bares their soul. They don’t hide behind the words or behavior of a fictional character. Instead, they come out as themselves. They say all the tough things and take  full responsibility for their thoughts and feelings. That’s hard. That’s risky.

Indeed, the personal essay deserves respect, Those who view it positively, and there are many, need to become more vocal in their praise. That seems to be changing as memoir has become a more accepted genre. Further proof is in looking at current movies. For each of the last two years, half of the Oscar-nominated movies have been based on a true story. Perhaps the personal essay is coming into its own. Once again.

Also, maybe it’s time for all readers to critically look again toward this genre and give the essay and all non-fiction writing its due. Then, perhaps more writers will show courage and reveal “the record of one’s own soul,” reaping the benefits of telling the rich and meaningful stories of their own lives.

 

Anaphora* For Writers

 

*A Greek word for parallelism or repetition

 

I am the writer who bares my soul

You are the booklover who is too busy to read

He is the editor who rejects my work

They are the family who says everything I write is great

They are the non-writing friends who don’t understand what I do

We are the writers who do it anyway

It is the work that I love

The ABC’s of MS

I’m not going to clutter your mind with the neurological details of MS. You can google that stuff anytime. Long and short of it, it’s a brain disorder and no one knows why it picks who it picks. The disease is different for everyone. And there is no cure. It’s hardly ever terminal. But it sure can be inconvenient.

There are four types. Again, Google for the details.  Mine started in 1981 as a clinically isolated syndrome (CIS) with symptoms coming and going without enough to make a clear diagnosis. I spent eight years in this limbo. Multiple doctor visits always resulted in hearing my anxiety attacks and vague symptoms were caused by depression or stress. So, diagnosis was a relief, finally knowing what was happening to me. By the way, I haven’t had an anxiety attack since.

I was finally diagnosed in 1988 with relapsing and remitting MS (RRMS). As I’m aging, I’m assuming I’ll move into the secondary progressive category (SPMS). Maybe I’m already there. Who knows. My exacerbating and remitting type means it can come on and then go away any time it wants. I can rest and do all the other things I’m supposed to do and it can exacerbate anyway. It’s a sly devil.

It’s also confusing as hell. On one hand I’m told how important it is to stay active and do whatever I can. Then I’m also told I have to rest and that over activity can exacerbate symptoms. And I never know for sure if I’m doing the right thing. I walk a fine line, that’s for sure.

Each person has to figure out what works best for them and it’s a puzzle. One piece of that puzzle, what I’ve come to call the ABC’s of MS, I learned quite early. In fact, I was still in the hospital with this new diagnosis when I went for my daily physical therapy session. I must have asked just the right question and Bob, this kind and very patient physical therapist, explained things in short order. He said it pretty much this way:

You’re going along and let’s say, health-wise, you’re functioning at an A level. Then there’s this event and your symptoms cause you to go down to functioning at a J level. That’s what happens when the symptoms are active. And once you go into remission, then the work begins.

You have to build yourself up. Have an exercise program. Start walking when you can and do a little more each day. Be sure to get enough rest but be as active as you can be. If you work real hard you may get back up to functioning at a D or maybe at an E. You never get all the way back to where you were before the symptoms started but things can get better.

Then you go along until the next time. Let’s say that then you go down to functioning at a J again. Once the symptoms reduce, you work really hard and you go back up to an F or a G. And that’s why it’s so important to build yourself up after each attack. If you don’t do the work, you’ll be stuck at that J level forever. Then next time symptoms appear, you’ll go down to an S. See what I mean?

In my case, it all started with numbness in my right hand between the thumb and the forefinger. As time passed, I also had numbness in my feet. As the symptoms worsened, the numbness traveled up my arm and legs. With the passage of time and with rest the symptoms receded.

I feel lucky that I’ve had such good remissions. There were times I almost forgot there was something wrong with me. But then it would come back.  Over time I noticed that not all the numbness disappeared.

Now after thirty-five years of these ups and downs, I have permanent numbness in my right hand. I still can use it but there is stiffness and loss of feeling. I drop things a lot. And I have permanent numbness in my feet. When my MS is active I can’t walk too far and my balance is poor.

Assigning a letter may seem arbitrary but it does help me compare one day, month or year with another. Maybe what’s more important is that most days I’m able to do everything I want to do. I’ve never been particularly athletic and always worked at sedentary jobs so I’m able to get along pretty well.

But there’s more to this than handling only the physical symptoms. There’s also the emotional and psychological end of things. That can be a roller coaster too and I have to navigate the down days. Once I can get past the “why me” whining, that’s where the ABC’s help. My mental attitude generally swings between an A and a D with some days going all the way down to J. But I know I can work my way back up again.

 

What Corky Would Be Saying Now

(August, 2016) My dad, Corky, was opinionated. Outspoken. I always knew where he stood on any issue. Lately, I’ve been wondering what Corky’s take would be on the current presidential election. I’m not going to use the old cliché (rolling over in his grave) but I do sense some ominous rumbling coming from off in the distance.

Corky died in 2008, right before the presidential election and voted absentee. My sister told me how conflicted he was with the McCain/Palin ticket which was surprising coming from my hard-core republican Dad. She also told me he’d toyed with a vote for Obama but in the end stayed loyal and true.

I recall, when in college, how he and I had stimulating conversations about books I’d brought home from my classes. That was, until our beliefs differed. Still, I will always treasure our spirited talks of long ago which is probably why my most vivid recollections of my dad revolve around politics.

Politics is a classic example of how you can love someone and yet not like or agree with their attitudes or behavior. I couldn’t figure out how this working class man could become so conservative. Especially, when he’d benefited greatly from the social amenities of a democratic society. Dad was a policeman and I guess that’s the key. Coming home from a work day filled with unsavory people and events, I’m sure this led him down the path of right-wing thought.

Then talk radio further solidified his views. Each visit home was punctuated by his current adoration of one celebrity after another. This went from Rush Limbaugh to Don Imus and beyond. I vividly remember Dad’s detailed description of how G. Gordon Liddy, Watergate conspirator turned talk show host, burned his hand, holding it over a candle. Just to make a point. I never got the point but Dad sure seemed to.

Family gatherings grew more tense when Dad became unhinged by Bill Clinton. My siblings and I became desperate, we made a pact to take turns changing the subject whenever politics came up. Which it always did. It went something like this:

Corky: “Can you believe what that horse’s ass Slick Willy said to Congress about that trade agreement?”
My brother: “So, what do you hear from Clarence? Is he still working at Oshkosh Truck or has he retired?”  A few minutes of regular conversation would ensue. Then the next round began.

Corky: “Did you hear how Rush let those liberals have it about that affirmative action baloney they want to ram down our throats?”
Me: “I noticed how great the garden is. How many tomato plants did you put in this year, Dad?” These times resembled a ping pong game. Ping, ping, ping as we’d do our best to stay focused on the routine issues of daily life.

Dad spent hours each day reading several newspapers and cutting out articles and cartoons about Clinton politics. He was so proud of himself when he acquired old wallpaper sample books from a local home decorating store to store all of these super valuable materials.

Finally, a place to preserve every cartoon and editorial printed about Slick Willy.  Particularly silly or damming material was taped to the covers. I think he filled up six or seven of those books and proudly displayed them every chance he got.

Corky: “He has plans, diabolical plans. You wait, these things will be important. I’ve got to keep a record.”
Me: So, I see you have new neighbors next door. Have you met them yet?”
Corky: “No. The guy is a professor over at the University. Probably another one of those pinko liberals.” Poor Dad, living in pinko, liberal Madison with all the blue political lawn signs planted in yards up and down the block.

Which brings me to today. Both Mom and Dad are gone and their house has been completely rehabbed by one of those professors from the University. And I’ll bet there’s a blue lawn sign out front. Dad’s having conniptions about that, I’m sure. And about the current election.

My trumpian father would be right at home with the verbose behavior and coarse language. He’d revel in the caustic trumping of each candidate’s outrageous allegations about the other. He’d be right in there arguing over the trumped up accusations and insinuations.  He’d be in his glory.

But there’s something that would be really worrying him.  Something that could mean the end of life as we know it. That’s the possibility that Slick Willy would find his way back into the White House even through a side door. Or a back door. Where are those wall paper books when you need them!

 

Endless Cup

Holding the vessel and savoring the warmth
makes me feel so light and so free.
Time pauses; this relaxation and rest
adds to my life, peace and serenity.

First thing in the morning
then mid-day with a newspaper look,
a companion with the TV news
or my latest book.

I get anxious when my supply is low,
rush around town from store to store
to find those little purple envelopes,
hoarding as I search for more.

I’ve learned the best day to shop,
relieved when the shelf is stocked.
But with other customers in pursuit,
fear the grocery aisle will be blocked.

Not sure why I’m so obsessive,
held hostage instead of free.
Comfort and serenity be damned,
I need my cup of chai tea

 

IMG_3379 (1)

 

Children Protecting a Mentally Ill Parent

July, 2016

The family systems dynamics of dealing with a mentally ill parent are on full display. That’s how and why Donald’s Trump’s high achieving children over compensate for their father’s acting out. They swoop in to protect him, trying to regain control, putting pressure on him to pick a sensible path.

What’s clear is that they’ve been doing this most of their lives. That’s why they’re so good at it. But it may not be enough in this highly charged world of national politics.

Early in the campaign season, I noticed his erratic behavior. There are now a multitude of examples all with an eerie sameness. On this particular night, he began his rally with a few pieces of paper in his hand. No doubt given to him by his campaign handlers hoping to keep him on track.

These talking points were, within minutes, thrown aside leading to his rambling from one topic to another. He never finished a complete sentence before galloping off to another subject with arms swinging wildly and voice wobbling. He’s imploding, I thought.

This was all too familiar. In my working life, I was a licensed social worker and therapist. I kept the DSM (the Diagnostic and Statistical Manual of Mental Disorders) on my desk or in a nearby bookshelf throughout my thirty–five year career. When a therapist, I always worked under the supervision of an MD or PhD for billing purposes and learned very well the long and complex road to diagnosing a personality disorder.

Please note that everything I’m saying about him is presumptive. There has been no diagnose of this individual and there probably won’t be. Personality disorders are especially difficult, both for the clinician and for the patient. Research is still out on the causes but studies point to a combination of genetics, childhood trauma or verbal abuse and negative peer influence.

A general definition of a personality disorder is “an enduring pattern of inner experience and behavior that deviates markedly from the expectations of the individual’s culture.”  What the textbooks call these “maladaptive behaviors” are deeply embedded into the personality of the individual.

Which explains why Trump seems stuck in a whirl of repetitive and unproductive behaviors. He knows no other way. Sees no other solution. Habitually reverting to old and time tested patterns of behavior have, let’s face it, rewarded him many times. Evidenced by his wealth.  And he’s not the only one. All you have to do is Google ”famous people with personality disorder.” You’ll be surprised. Or maybe not.

Very early in the campaign season, it wasn’t difficult to spot the obvious signs of his narcissism. Features of this personality disorder include: grandiosity, arrogance, lack of empathy, needing excessive attention, being exploitive, feeling entitled.

Add to that, the recent revelation by a journalist (Tony Schwartz, in New Yorker magazine) who is finally saying what he’d discovered. Schwartz followed Trump around for eighteen months then ghost wrote The Art of the Deal. As a result of getting to know him so well, Schwartz calls him a black hole, someone without a soul. I’m sure he isn’t trying to be poetic though his comments are sobering.

Schwartz goes on to call him a sociopath. This is an outdated term but its features are now found in the DSM’s diagnostic criteria for anti-social personality disorder. Those traits include: deceitfulness, impulsivity, lack of remorse, aggressiveness, and reckless disregard for the safety of self or others.

Here may be an individual with two full blown personality disorders.  And while his narcissistic features and his antisocial traits seem to be what we see day in and day out, there has been no definitive diagnosis. Which is why such silence from the psychiatric community. And there won’t and can’t be any official labeling until Trump enters into therapy.

The key to treatment for personality disorder is that the patient continues with the same therapist throughout so that these patterns can be fully analyzed and addressed. Its hard to imagine Trump admitting he might have a problem or might need some help in improving his communication or decision making?  That’s why personality disorders are so hard to treat and why the success rate is so low.

So don’t be surprised at the next spewing of hateful rhetoric, the next demonstration of lack of empathy or his angry diatribe about how he’s being mistreated. Trump will be acting the same way. Until election day. Now I’m the poet!

His campaign handlers will continue to justify his erratic behavior (“He was being sarcastic”).  His VP pick will be expected to “smooth out his edges” and rationalize his gaffs. His children will play out that very important role of the caretaker. News pundits will gleefully revel in the daily newsbytes that build their ratings. Hopefully, voters will come to understand what they’re dealing with before it’s too late.

 

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