Monday, January 12, 2015

One Selection Sunday, Almost Seven Years Ago


This is a repost. If you don't "blog," whatever that has come to mean, I beg you to keep a journal or to hang on to annotated date books. Sometimes an accidental look back can take your breath away and deepen the tints, light, and shadows of your presetn day. 

The original date of composition was 15 March 2009. I see now its many faults, my errant romanticizing of some things basically horrific. 
And then there are the many moments when I repeat the fictions I was force fed, and believe the fictions force fed my kin, as well.  

Forgive me it all, for I had just fallen in love.

Be well, Dearest Readers.

Selection Sunday.

UConn is #1 in the West, Memphis #2

The Pittsburgh Panthers are #1 in the East Region.
Inexplicably, wrongly, in a profoundly turdified decision, Duke is #2 in the East (first round against Binghamtom, #15 -- their NCAA post-season début)
FSU = #5 in the East, first round against #12 Wisconsin

UNC-CH #1 in the South, #2 is Oklahoma

Louisville heads up the Midwest, with Michigan State taking the #2 spot

At my age and intellectual maturity, you'd think I could navigate the intricacies of "family" better than I do. All parties are emotionally stunted; None of us have a clue how to relate to one another; Only a few of us will admit to love; Everyone is permanently estranged from one, or several, very important primary relationships.

Never mind some of the more awe-inspiring tales of assinine stubbornness and convoluted recollections. Never mind the child who hasn't spoken to his Mother for 42 years. Never mind the child who thought perfectionism would be protection from parental malevolence. And certainly pay no never mind to that child who loved everyone overly much, for his was the Kingdom of No One.

Never mind, never mind!

Still, on Selection Sunday, I find it hard not to think about the two family members most dear to me: the Brother-Units -- TW and Grader Boob.

TW and I were separated for an unbelievable 39 years. I am wrong to assume that I knew him at all before he "left" the family way back when. Certainly, any claim I make to know him now should be equally suspect. TW went missing during the Summer of Love. We lived north of San Francisco at the time and life chez nous was nothing if not turbulent, tense, and sometimes downright emotionally brutal. I think I went into a fugue state from which I have yet to successfully emerge.

TW stands for Tumbleweed. It is hard to call him that, as I knew him as someone else, and then created a whole imaginary persona during his 39 Long Missing Years. Honestly? I still call him by his childhood nickname -- and struggle to remember not to use it when I email or telephone.

Okay, okay. So we have only spoken once by phone. I just can't do it. I have phone phobia as a matter of course -- but this is an entirely different animal. I am afraid he won't like me, won't have anything to say, or that he'll find me slow-witted and boring. The one time we did speak? Perfectly wonderful. Incredible. Sweet. I sucked on the end of a pen and ended up with inky lips. He was drinking Scotch, I think.

It was almost exactly the kind of conversation that Grader Boob and I have been enjoying for decades -- hysterically funny and intense.

He told me about his daughter and her mother, about eating out of trash cans, getting shot in the gut. He told me about the woman he loves, about becoming a grandfather!

He wrote me later that I "give good phone"!

We email with regularity and that has occasioned much hilarity, too, but more than that, his letters make me cry. Okay, so maybe it has become more like sniffles -- I sniffle a lot. How do you apologize for having left, and on purpose, too, a child alone in the world? Our Father told us that TW would join us in our new home overseas, that he was coming in about 3 months time, and oh! won't that be GRAND?

He never came.

I remember sitting on the porch, all fugued-out and reading Tolkien, watching the afternoon rains head our way, relishing the cool breezes that announced the line of showers. Grader Boob, who had sprouted unexpectedly to a manly 6' plus, came into view on my right. Something about the air changed, and it wasn't atmospheric pressure. Dad came into view on my left. I remember that he had nothing on but a pair of boxers, starched and eerily bright white.

It was a train wreck.

[Whole section of original post, blown up, out, and away -- to smithereens!  You are welcome!]

And that was that. 39 years.

Today, TW is many things. I imagine that he has worked hard every day, one way and another, since he "left" us, at a variety of jobs, both legal and illegal, interesting and dull. At the moment, in order to "pay for cat food," he divides his energy two ways: he is a tour guide for trekkers to the Grand Canyon (indeed, if you go to one of his blogs, he posts nothing but photos of The Canyon along with the thoughts inspired there) and, of course, he is a bookie of long standing.

The photo above is his.

This is one of his busy times -- the conference championships, the NCAA basketball tournament. I really want to learn more about betting and gambling and odds and busted kneecaps, but get the distinct sense that this brother of mine doesn't suffer fools... He recently described the dyspepsia he suffered when the umpteenth elderly couple in a matter of hours approached him, saying: "We've never done this before. So how does it work?"

Grader Boob went on to become what is known as "A Fine Young Man," and "A Good Person" -- although each remark of praise was usually followed by a heartfelt "if only he would cut his hair."

I really shouldn't get started because I tend to go nuts on the superlatives. Truly good, is he. Smart. Kind. Funny. Compassionate. My hero.

There was an occasion -- it was 1978, I think -- when simply the sight of him saved my life. That was also the day he turned me on to Bruce Springsteen, and didn't make too much guff over watching me drink a beer.

(An amazing piece of Grader Boob trivia: He has never had ANY alcohol or used ANY illicit drug. More awesome? He's never had coffee. Something {whistle, whistle} convinced him early in life that potentially mind-altering substances were evil. He was, for many years, quite the athlete, and that played into these decisions, too.)

It's unfair to Grader Boob, though, to pigeon-hole him so. He is wounded. He is scarred. He is so fearful of the possibilities of change that after he got his undergraduate degree, he stayed at the same university for his grad work, then his years teaching... and now, all these years later, he is still there. Unhappy, and stuck. Growing up, what he loved was repeatedly snatched away. As an adult, he hunkered down, determined to stay where he was, and to keep what, and whom, he "had." I love him so.

He's a marvelous professor, a fan-fucking-tastic Brother-Unit!

When I "found" TW a little over a year ago, I was trembling in my haste to call Grader Boob, to share the news, to rejoice and be glad. It felt like a punch in the stomach when he instructed me to not provide TW with any information about him. When I managed a breathy "why?" -- he pointed out that we had not been hiding, that we could have been easily found at anytime. In my head, a voice chanted "so-fucking-what-so-fucking-what?" but, of course, I lacked the courage to challenge that logic and step out of my role as Little Sis. I wanted to ask him how he might have felt, were he The Abandoned One? Would trust really have been that strong in him? Gee, I think I will try to find the splintered nuclear family that left me alone on the friggin' North American friggin' continent. TW desperately wanted his Mother, also, we tend to forget -- but she was busy making babies with someone new, and, again, she was on a completely different continent, a third continent, as well! It almost looked like a game -- how far away from the young TW can we get? Like playing RISK, with a twist.

du calme, du calme...

Anyway -- I am the only available touchstone for TW when he thinks of Grader Boob. And should Grader Boob change his ponderous mind, I am ready for that, too. I am the liaison between the Mother Unit and her first set of sons. Neither son wants any contact with her, or allows even the sharing of an address, or an assessment of happiness. Sometimes, I am afraid to speak due to momentary confusion of who allows what.

So what is it about today, Selection Sunday, that makes me think of these dear doods to whom I am, purportedly, related?

All day, I've been emailing the Grader Boob, and simultaneously getting *this* close to picking up the phone to confer with TW over the teams I am selecting for my prognostication entry, then finally settling for electronic communication with him, too. I am getting confused in these similar conversations, as the Brother-Units start to blur and blend in my mind.

D'you know that the two of them have nearly identical writing styles and vocabularies? Senses of humor? Intransigeancies?

What is a sister to do?

At the close of our first and last conversation, TW asked me to ask Grader Boob "to forgive [him]."

Please explain to me why this man, treated like dirt and left behind, surviving only by luck and wit, needs anyone's goddamned forgiveness?

I did as he asked and had to report back, of course, that Grader Boob wanted nothing to do with him, and found no way to say it but to blurt it out, pounding these keys. TW answered:

discretion being the better part of valor,[GB] has done well to shunt my overture to a siding. i admire his compartmentalization survival mechanism for the quite rational response to unsolicited life clutter that it is. there's every chance that the unknown might subtract more than it adds. i hope he blossoms, flourishes and triumphs beyond his wildest imaginings. it was never my intention to get all touchy-feely, nor to cloy, nor to impede anyone's progress through this world. hell, i have made such a pariah's garbled hash of things that when you eventually weary of me as well i absolve you entirely in advance. until then, dear heart, i am so very grateful to have you to talk to. you sew back on my fraying shadow, [Retired Educator] darling.
D'you see what I mean?

I wonder what the odds are for a Duke v. Pittsburgh match-up?

© 2015 L. Ryan

Sunday, January 11, 2015

For Your Consideration: Jenny Loder Has CRPS and Could Use Some Help

ADDENDUM: Even though the financial goal has been met, let me encourage you to give more. Ms. Loder has no idea of the financial hardships she will face in the coming years.  The costs "surrounding" the ketamine therapy alone are shocking.  Please trust me -- and give more. Thank you.

This news article showed up in one of my bot-driven searches for research on CRPS. Occasionally, human interest stories slip in, and they are usually awful and full of misinformation.

We can agree that I am quirky.  One quirk involves profound irritation at the continued use of the term RSD, as it perpetuates a medical fallacy and... well, why don't I stop before I get started?'

This article, then, already had two strikes against it -- it was a human interest story and its title blared "Reflex Sympathetic Dystrophy."

However, it had magic words.  A suffering person was asking for help.  How often in these glitzy times when everything has a spin on it do we see such simplicity?

I can't help her, but maybe you can.

*****     *****     *****     *****    *****     *****     *****     ***** 

Published in the online paper True Jersey this morning by  Kelly Roncace of the South Jersey Times

RSD: Paulsboro woman suffering from Reflex Sympathetic Dystrophy asks for help

Jenny Loder's left hand
during a CRPS "flare"
[Her photo]
When Jenny Loder had surgery five years ago, she didn't realize how much it would change her life.

"I never recovered from it," said Loder, now 31, of Paulsboro. "After the surgery, I got an infection. The surgeon ignored it to the point I almost died because it went on so long and went so deep."

Next, the pain began.

"It was the absolute worst pain you could ever imagine," she said. "Like I dipped my hand in gasoline and set it on fire, then rubbed sandpaper on it."

The pain started in her chest, then moved to her arms.

"Now, it's all over my body," Loder said. "I was diagnosed with RSD last March."

RSD or Reflex Sympathetic Dystrophy syndrome, is a nervous system disorder usually brought on by injury, Loder said.

"But it could be from someone just stepping on your foot," she said.

Dr. Deanna Janora, MD, associate professor in the department of rehabilitation medicine, Neuromusculoskeletal Institute at Rowan University School of Osteopathic Medicine, said RSD is a chronic pain syndrome, also known as Complex Regional Pain Syndrome (CRPS) that is characterized by severe pain, limited to one body area, such as an arm or leg, without a specific cause or origin.

"It is not known what the exact etiology (cause) is," Janora said. "Because of the symptoms, it has been believed that the sympathetic nervous system is involved. Most times, onset of symptoms follows either a local trauma, such as a fracture or surgery - mastectomy for instance - or a central nervous system event like a stroke."

When Loder's pain began, she went to her doctor, but was unable to find an answer.

"I was bouncing back and forth between doctors," she said. "It's the most painful of chronic pain disorders. The pain is at 10 at all times."

Loder has a 3-year-old daughter, a full-time job and an "orphan disease" with no cure that causes nearly unbearable pain just from wearing clothing.

Currently, she is taking Clonidine, which is used to control blood pressure but helps with RSD nerve pain and spasms, Cymbalta and Oxycodone for pain.

"In August 2013, I had an injection of painkillers and had a bad reaction to it," she said. "I ended up in the ER."

Treatment for RSD is available, but appointments are few and far between.

"Since the etiology is not known, there is no one treatment for this," Janora said. "A treatment program needs to be multifactorial and consider patient responses."

Medications to relieve the symptoms include low doses of tri-cyclic antidepressants, antiepileptics such as Gabapentin, medications that increase serotonin and norepinephrine levels in the brain such as Duloxetine, and topical anesthetic gels or patches.

Another treatment is Ketamine Therapy.

Janora said Ketamine is a medication that blocks the neurotransmitter signals for pain at the N-methyl-D-aspartate receptor - the predominant molecular device for controlling synaptic plasticity and memory function.

"This is one of many chemical signals our bodies have for pain and is a different location from the opioid receptor most people think about when they are considering pain," Janora said. "By blocking the NMDA receptor, the goal is to block the regeneration of the pain signals, which seem to be on a positive feedback loop."

The only location that offers this treatment in the area is Drexel University College of Medicine's Pain Management Department in Philadelphia.

Loder has an appointment for Ketamine Therapy, but because of the extensive waiting list, she is scheduled to visit Drexel on April 4, 2016.

"The patient goes into a medically induced coma for five days and, the idea is to reset the nervous system so it can rest and heal itself," Loder explained. "The Ketamine treatment will bring the pain down to a six or seven."

In the meantime, Loder continues to take the medications prescribed to her by her physician, and try her best to live as normally as possible.

"The medication makes it so I can get out of bed and do what I need to do," Loder said. "It's just hard to accept that this is how things are going to be for me from now on."

While she waits for her treatment, Loder struggles everyday to raise her daughter and get through the work day in pain.

"I work for an alarm monitoring company in Williamstown," she said. "It's mostly sitting at a desk, but my doctors want me to take time off. I can't afford to do that."

Loder said she has never asked for help in her journey with RSD, but, because her doctors have advised her to take a leave from work, she has reached out to family, friends and anyone who can help.

"I have a Go Fund Me account now because I'm at the point with the pain levels, working a 13-hour day is just too much," she said. "The reason the Go Fund Me is so important to me is that everyday the past few weeks has been a struggle for me to get out of bed."

The cold weather and low barometric pressure makes her condition even worse.

"Just knowing I have to get up in freezing temperatures and drive 30 minutes to work exhausts me," Loder said. "By the time I get home, I'm just so tired and in so much pain, it's all I can do to take care of my daughter and get us through until bedtime."

Ideally, her doctors would like her to stop working totally or go part time.

"There is just no way for that to happen at this point," she said. "We are a two income family and we depend on my half of the income to stay afloat."

Loder's boyfriend works Monday to Friday from 1 to 9 p.m., and she works Friday to Monday 5 a.m. to 3 p.m.

"We have to work separate shifts so that we don't have to put our daughter into daycare," she explained. "On Mondays and Fridays, a family member watches her during the overlap until I can get home from work."

Loder said she has never asked for help before - many of her friends don't even know she was diagnosed with RSD - but has reached a point where she needs assistance.

"I've never asked for help before," she said. "In fact, I've only recently started to admit to the people outside my immediate family that I have a chronic, incurable illness that renders me with almost no strength and extremely limited in what I can do because the pain is just that bad. But I've reached a point in my life that I must reach out to the community in which I've lived most of my life."

To help Loder and her family, visit

Kelly Roncace may be reached at Follow her on Twitter @kellylin89. Find the South Jersey Times on Facebook.

© 2015 L. Ryan