One Sick Mother

Setting Goals: The Reading List

I have always been a very driven, goal oriented person.  It is one of the reasons I did well in the software business for so long, I was able to strive toward a goal;  work to a deadline and pull many (sometimes unwilling) colleagues along with me, by sheer force of will (and occasional threats of violence).

But it is very difficult to set goals when you are chronically ill. Surprisingly (to me), even the small goals proved a challenge. 

I tried. I took some classes. I had to drop out of the PhotoShop class halfway through because I was having seizures or auras.  I stopped the yoga class because they were doing a lot of moves that are ill advised for a person with Ehlers-Danlos Syndrome and/or Syringomyelia. I kept having to bail on my neighbour for our dog-walking runs because of seizures and fatigue or pain. I was fired from Physical Therapy because I kept having seizures there. And I grew tired of missing goals I set for myself around the house (like repaint the upstairs bathroom, which is tiny); unable to perform them due to pain, fatigue, seizures or dizziness.

There are a lot of things I would like to do and learn. Ambitious (and currently impossible) projects like an MBA aside; there are many classes I would like to attend, just for laughs: Knife skills, sewing, ballroom dancing,  (an ambitious one, that), yoga, pilates, pottery, jewelry making, beading, painting -... the list is endless! But right now, I can't do it. I cannot spend money I don't have on a class I may not be able to attend.  It is very limiting. And soul destroying.

Recently, my seizures and dizziness have been even worse, leaving me even more bored and isolated. I have been spending less time on the computer because the screen bothers my eyes. I was stuck for something to do, because I CANNOT sit and watch telly for hours on end.  I knit until my hands hurt. I listened to all my CD a gazillion times, got bored with all of them, but was too poor or stingy to seek new music.  So I finally renewed my relationship with the public library. 

Cool.

And I decided that now is the perfect time; -while I am pretty disabled, and until I can get some decent treatment, to do something I had been meaning to do for many years. Read some classic novels.  Oh yeah baby!  Here is an opportunity to set some goals AND to improve my tiny little mind.  My butt may suffer, but it was suffering anyway. Without good medical guidance, there is no helping the butt right now.

I  decided to set myself a list of 26 classic novels to read, one for each letter of the alphabet. When I am finished that list I will assign myself another one. I was unsure where to begin, so I shouted out to my Facebook friends for some recommendations which they readily gave (thank you!).  And then I gathered a few "100 best..." lists off the Internet, went through those and -somewhat randomly- came up with my final list. I thought to keep it to one per letter of the alphabet where possible, because that would place some books on there that I probably would not have chosen otherwise -just to mix things up a bit. And it stops me from reading only books that start with "G" or "H", or from reading six books by the same author at once; both habits towards which I gravitate.  

There are some obvious holes in this list because I may have read the book already a gazillion times, (Wuthering Heights) or because I just couldn't be arsed (Ulysses).  I couldn't find any J, K, X and Q books, so I substituted those with  a few other letters.  I am sharing this list just to keep myself honest (but I reserve the right to stop reading a book if I hate it)!

A

Anna Kerenina by Leo Tolstoy

Atlas Shrugged by Ayn Rand

B

Blood Meridian by Cormac McCarthy

C

Cat's Cradle by Kurt Vonnegut

Crime and Punishment by Fyodor Dostoevsky

D
Dracula by Bram Stoker

E

Enders's Game  by Orson Scott Card

F

Frankenstein by Mary Shelly

G

Germinal by Emile Zola

The Grapes of Wrath by  John Steinbeck

H

A Handful of Dust Evelyn Waugh 
(Mrs whatsername with the hand-knit Fair Isle sweaters from high school will be happy that I finally crossed something off me High school reading list after all these years.  Although I didn't realize until today that Waugh wrote "Brideshead Revisited", which I had read  before high school, or I might have lost one less brownie point from her.)

The Heart of the Matter by Graham Greene

I

I , Claudius by  Robert Graves
(loved the TV series with Derek Jacoby!)

L

Loving by Henry Green

M

Madame Bovary by Gustave Flaubert

N

Nostromo by Joseph Conrad

O

One Flew over the Cuckoo's Nest by Ken Kesey

P

Play it As It Lays by Joan Didion

R

Ragtime by E.L. Doctorow

S

Shirley by  Charlotte Bronte

T

Tender is the Night by F. Scott Fitzgerald

U

Under the Volcano by Malcolm Lowry

V

V. by Thomas Pynchon

W

The Wide Sargasso Sea by Jean Rhys

Y

Yarrow by Charles de Lint

Z

Zuleika Dobson by Max Beerbohm

 

I have no idea how long this will take me, and I am setting myself no timeframes for completion of this task. The satisfaction should be in the journey, anyway. 

I hope.

Private Information, not Public Property

The death of Jett Travolta saddened me deeply. I am very sad for his parents and sister, who lost a beloved family member and who must now bear their grief under a very bright spotlight in the public eye.  I am also very sad to see that now -STILL- there is endless speculation about whether Jett was Autistic or not.

My short answer to this question is  What does it matter anymore -if it mattered at all? He's dead.

But the long answer -if indeed there is an answer- is that it was ...IS nobody's business except Jett's and his immediate family. It is private information. But somehow, people seem to think that because celebrities are famous, they have to open every facet of their lives (and their children's lives) to the world. This is not the case. All people, even celebrities, have a right to privacy.

Another thing that burns me: Beneath all the speculation there was the subtle subtext -unspoken- that the Travoltas somehow never acknowledged or admitted to their son's "autism" because of their Scientology religion. There is a subtle judgment in the media pertaining to this, the unsaid words: "unacknowledged", "untreated", "ignored", "neglected".  Again, their religion is their business, and no-one has a right to judge them for it.

Now some people may say that if Jett were Autistic, the Travolta's -being public figures- had some kind of responsibility to share that with the world to raise money and awareness and to make Jett a poster-child for Autism (or Epilepsy), kind of like Jenny McCarthy did with her son, Evan.

Some public figures do choose to go public with illness and disabilities. Lance Armstrong has done a lot for cancer awareness and Michael J. Fox has raised a huge amount of awareness for Parkinson's disease. But gong public was their choice as informed adults. And although it definitely helps a cause to have a celebrity spokesperson, no celebrity who has an illness or a disability owes that cause anything at all.

Especially if they are underage.

Jenny McCarthy chose to go public with her son's Autism -or Autism-that-used-to-be-but-is-allegedly-cured (and don't even get me started on that one!).  I often wonder how Evan Asher -that is his name BTW, will feel about his mother's telling the world his diagnosis and plastering his face on book covers before he was old enough to object? I wonder how it will impact him when he comes of age to be known to the world as Jenny McCarthy's (formerly -OK let's not go there) Autistic Son? That's a pretty big magnifying glass under which to live your life.

Now I know there is a tinge of hypocrisy here. I blog about my own children and their diagnoses. However, I don't parade their pictures here. Heck! I don't even use their real names! I don't think talking about them to the few hundred people who read this blog is the same as pulling them out to stand in front of stadia full of people at Autism conferences, clearly overwhelmed and covering their ears against the noise. Not unless they WANTED me to (and why would they?).

And they don't

Now I know that Jenny McCarthy and Autism Speaks have raised a lot of awareness  -I don't particularly like or agree with all of their messages or how they went about it. But they raised awareness.

How are they raising their children?

In my head, it all comes down to the concept some people seem to have that children are "owned" by their parents and do not exist as people in their own right until they are 18. Even worse, some people seem to think that children are some kind of communal property. It takes a village to raise a child, right? But no. That does not give the village full access. Sorry.

We do not own our children. Our children own themselves. We rent our children for a few years, and it is our responsibility as parents to ensure we damage the goods as little as possible. By the same token, we have no right to another person's child. They don't have to talk to us if we address them. They do not have to smile if we smile,. they do not have to tolerate us ruffling their hair, no matter how nice or affectionate we are. They are their own people and they owe us nothing.

I always thought that most people feel as I do. Until I almost came to blows in the obstetrician's office over circumcision. The doc was practically insisting I have a boy circumcised -to the point where I feared he might "forget" my objection and do it anyway. Whereas I took the position that I had no right to cut pieces off a body that did not belong to me. What if he grew up and wanted his foreskin back? If I left him intact, he could make the decision himself -painful as it may be- later in life. We argued -heatedly- for about 10 minutes. Finally I said "I am happy to teach him to wash, but I will not cut any pieces off him without his permission". As he was still in utero, permission could not be granted. So we left him intact.

I was kind of shocked to discover that some (many) people don't share my views on this. Some people seem to think of children -especially young ones- less as individuals and more as property. I recently fielded a question from a lady concerned that her preschooler hated people touching her. How could she change this?  Well, my daughter had the same issue, but I didn't think of it as a problem. She owns her own personal space, and if she doesn't like strangers putting their hands on her, who am I to tell her she must tolerate it?  I think it is just fine for a person -especially a girl- to be protective of her personal space. I am not going to teach her that it is OK to allow strangers to maul her.  I made this point and the other mom was kind of taken aback "I never looked at it that way".

Why not?

Personal space is a right.

Privacy is a right.

I don't know the full story of Jett Travolta and it is none of my business, but I do think the Travoltas were right to keep his business private and to keep him shielded from the press. I do wonder maybe if he had had the chance to grow to adulthood, would he have made the decision to go public with his Autism (if any) and seizures?

We'll never know now. He won't get that chance.  It is very sad.

Book Larnin'

Since I got sick, I have been referred three times to Physical Therapy. I have never graduated from PT. I never got the coveted graduation t-shirt. But I spent quite a bit of time over there. Nice people.

The first referral was for hands and back. Then it turned out that my insurance will only cover one body part at a time. I asked if "hands" was considered one body part or two?  It was one. So we started on hand therapy.  I was only a few weeks into therapy when I did something to my neck. So the neck became a priority and the hand therapy was were dropped. Fine.

THEN, about halfway through the neck therapy, my lower back went to pieces and the prescription was re-written. Again. No problem. We switched from neck to back.

Now the neck exercises had posed no problem for me. I have been pushing and pulling on little weights and pulleys and various thingys in standing, sitting and supine positions. The only real problem I ever had was if they "worked on me" upright. I learned the hard way that I needed to be flat for a neck massage or my pain went into the stratosphere.

When we started on "fixing" (ha!) my lower back, most of the exercises were performed laying on my back. That's when I started having seizures during PT. They and I tried a lot of stuff: eating / no eating beforehand, elevating my head somewhat (which definitely helped but didn't eliminate the problem), drinking water, no water.  We tried everything. But I could not show up for PT on my lower back and be sure I WOULDN'T have a seizure. In fact, I had them more than 50% of the time. It was starting to get silly, and I was politely asked to discontinue physical therapy until the seizure problem was fixed.  I was freaking out the therapists and the other patients.  Not to mention myself (but nobody asked me how I felt).

That was about 18 months ago. The problem isn't fixed, so I have had no physical therapy in that time.  However, I still have Ehlers-Danlos Syndrome. I still have problems with my neck, back and hands. None of that has gone away. Just the help was removed. I haven't really sweated it for now. I have bigger fish to fry. But physical conditioning -my lack of it- has been at the back of my mind.

Recently, when on-line at the pharmacy to pick up the pills for my freaky test, I picked up a book entitled "Overcoming Neck and Back Pain by Lisa Morrone, PT.  I flicked through it and it looked kind of interesting. A lot dealt with posture and sleeping position and very practical-looking tips. So I bought it for myself as a little Christmas gift.

I am not a big one for self-help books and I am really down on self-treatment without professional guidance. However, what I liked about this book was trhat it explained a lot that made sense to me: Like why sleeping on your stomach is bad (and I do it all the time) and how to correct it.

I don't want to turn this post into an advert for a book. I definitively think -especially for EDS-ers or people with any disabilities, actual physical therapy is the way to go. But there may be some people out there, who -like me- cannot go to PT right now, and a bit of book larning from this or a similar book  might benefit them too.

I haven't really started to implement any of the stuff from the book yet, BTW. I will post in a few weeks and let you know how I get on.

Am I The Only One Who Sees It?

That Michael Phelps knows he has a Connective Tissue Disorder (CTD) such as Marfan Syndrome and is not publicly admitting to it, that is.  Am I the only person in the universe who has read that passage in his book and interprets it -not as a statement that he doesn't have a CTD, but as a carefully worded failure to admit that he has one?

I really must be the only one. And I wondered about this for a bit. Were my instincts completely off?  Has OSM finally lost her edge?  I didn't think so. And then I thought about it some more and I realized that I am probably unusually qualified to spot this for two big reasons:

1. I have a connective tissue disorder and I know what is involved in the evaluation for and diagnosis of such. In other words: I know what was omitted from the descriptions in the book.
2. Having worked in customer service for years, I am quite an accomplished wordsmith and spinmaster myself. I recognize great spin when I see it, and I have to hand it to Brian Cazeneuve: He is a genius.

OK first the omissions: Say you are a young athlete who is referred to a major medical center by your coach to rule out Marfan Syndrome because not only do you have certain physical characteristics, you have a rapid heartbeat (that's tachycardia in medical parlance) to boot.  What will happen to you?

Well, you will have a lot of tests and examinations, probably by one or more teams of people.

First off, there will be extensive physical examinations. You will be weighed and measured. And when I say "measured", I am not joking.  The team should take a lot of measurements and check them relative to each other. The most publicized one is the height/armspan ratio, which OSM has mentioned here before and then seen her own words cut-and-pasted all over the web (Hello people: Copyright!!!!). But there are other measurements, ratios and tests: There is the upper to lower body ratio, There would probably be measurements of chest and head circumference (depending on your age at the time), as well as possibly of the long bones; femurs, fingers etc.

They would look for certain established signs of Marfan Syndrome, which are called (in a rare case of simplicity in medical terminology) "Marfan signs": Can you reach your elbows back behind you and touch them against each other?  If you wrap your hand around your wrist, does the pinkie overlap the thumb (both hands)? If you make a fist with the thumb inside the fingers, does the tip of the thumb stick out the pinkie side of your hand (and by how much)?

Scoliosis would be checked for as well.

There would also be an assessment of hypermobility, probably based on the Beighton Scale, and you would be scored based on that. A score of 5 or more (out of a possible 9) means clinically hypermobile.

There might be more: examination of mouth, teeth, jaw, and you would be asked to perform any "tricks" of hypermobility that most of us "X-men" have learned as kids and used to gross out other people.

So after all that is done, there is the other presenting factor to address: the tachycardia. (this may actually been tackled first). Any person who has a suspected connective tissue disorder -particularly Marfan Syndrome- will have an echo-cardiogram. This is essentially a sonogram of the heart, where a technician will use a machine to visualize and take pictures of the structures of the heart: the valves, chambers and surrounding large vessels to make sure there are no physical defects therein or thereabouts.

There would probably be other heart tests too: an EKG (the one test Phelps actually mentioned), probably a stress test, which is an EKG while on a treadmill (which he no doubt aced) and possibly a holter monitor test (i.e. 24 hour EKG) and a tilt-table test to rule out POTS, which is a common complication of connective tissue disorders.

You will also have a very thorough examination of your eyes, which he completely fails to mention; -Marfan syndrome effects the eyes in a lot of cases- and the lungs, too.

If anyone is curious, there is a complete Marfan diagnostic checklist here.  Interestingly, the 1.04 armspan/height ratio that Phelps has, although it is below the technical cutoff of 1.05, will not exclude him from a diagnosis if other criteria are met.

So Michael Phelps would have gone through all of this testing.  Now, I am not going to reproduce the relevant paragraphs from his books here and break them down piece by piece, because for all my whining about my own copyright, I am not going to disrespect his. So you will have to go elsewhere to read his words.

But there are some things he said -and more interestingly didn't say,  which I find completely fascinating. Here are some examples (paraphrased)

• He says he just had an EKG test (Hello! see above). But then he mentioned that his aortic route is clear. Well, you can't see that on an EKG. You can only see it on an echo-cardiogram. So he has had more tests for this than he lets on.
• He says everything was and is "okay". He does NOT say "I do not have Marfan Syndrome or anything similar" which is what most people who don't have it would say.  He says the "tissues are strong" (very interesting wording there -means a lot to an EDS-er, that.) and everything is OK.  You gotta love Brian Cazeneuve, because this is really a masterpiece of evasion.
  
• He then goes on to mention that he is tested once per year. OK. That is telling: In my experience, if a condition is ruled out, it is ruled out. You don't go back for regular checkups. My daughter was checked for cardiac complications due to her Ehlers-Danlos Syndrome. Her echo cardiogram was absolutely fine, and so the doctor basically said. "You don't need to come back here ever again. Have a nice life. Bye!"  I doubt any specialist  would follow up regularly  with a patient just for laughs. Most will only follow up if there is good reason. Otherwise they discharge you, and maybe have you follow-up with your regular doctor if there is a small risk.

I also wondered what was the specialty of this "Dr Peter Roe" who is mentioned in Phelps' book?  I searched for him online and I couldn't find him in John's Hopkins or anywhere else. In fact, the only hits I got when Googling him and Marfan syndrome were in relation to Michael Phelps.  Hmmmm. That didn't make sense.  I wondered if his name had been misspelled (by accident, of course)? I found a Dr Peter Rowe at John's Hopkins. Interestingly, one of his special interests is Ehlers-Danlos Syndrome (EDS). 

So maybe Phelps does not have Marfan's after all. Maybe Michael Phelps has Ehlers-Danlos syndrome?  That would explain a lot. It would explain why is heart is OK. EDS does not always impact the heart the way Marfan Syndrome does. Also many people with EDS have physical Marfan signs and characteristics, such as the long arms and fingers -myself included.

So I guess I was wrong when I said Michael Phelps has Marfan Syndrome. I figure he has Ehlers-Danlos Syndrome.  And he has found a creative way to not tell the world about it.

So really, my writing this is a pretty bitchy thing to do. I am sorry, Michael. I really am. My need to be right is more important to me than your need to stay in the closet with this.  And I really do think it will benefit a lot of people if this was made public. My children both have EDS and they need a role model who would enable them to face their future with pride and hope, not fear. -Because hello! The only other EDS-er they know is me, and OSM is hardly the picture of health and vitality...

Michael Phelps; I wish you could overcome your fear (of what?), stand up and be that role model. It would mean so much to so many people. You have no idea...

This piece and all One Sick Mother text is Copyright (c) Paula Rice, 2007, 2008. All rights reserved. Entries may be linked, but not reproduced in any form without prior written permission.

Fourth Time's The Charm?

...and it's not doctors I am talking about this time. I'm talking about books. That I write.  Because I have always been a closet (and frustrated) writer.  I wrote about three-quarters of a book several years ago. Then I wrote a children's book. Then I started a (different) childrens' series.   Nothing came of any of them. Partly because I didn't finish and mainly because I couldn't bring myself to peddle me wares.

I had kind-of hoped that this illness of mine and the enforced time at home would allow me to actually finish a book.  However, my brain had other ideas. It could not hold a plot and series of characters together if life depended thereon. I couldn't write!  I suppose I couldn't "create" if you want to get Orty and fanciful about it.

I think -looking back at how relatively well my brain has been functioning since I started this mental diet a few weeks ago- it was because my brain was literally being fried by its own electricity.

The poor fucker didn't stand a chance of creating anything under those conditions.

I mentioned that I had breakfast with a good friend a few weeks ago here.  Well, during that meal she looked me straight in the eye, smiled mischievously and asked "When is the book coming?". I had no answer for her. With the exception of this blog -which will hardly win any literary awards, I have not been able to string two decent words together for months.

There was a time when words came so fast and so easily that it was hard for my crappy typing skills to keep up. I used to wash dishes and fold laundry with words swirling around my head, composing paragraphs and chapters as I did mundane shit. I used to scrawl ideas, plots and lines on my palmpilot, little notebooks and random pieces of paper that I found. None of that hast happened in a long time. There was just no creative impulses left in my head.  The words were gone.

Until today.  Today I started me new book. OK. I only wrote a page and a line. But I started it! (Hurray!).  The words started to come as I wrestled to clean an eggy breakfast plate.  I think I practically tore a hole in the glaze, composing in my head, half afraid to put the plate down in case the words left me again.

The Persistence Of Memory

It has always been one of me favorite paintings, that one. Those melty clocks just speak to me. I used to wonder at the name -not being a terribly Orty type meself (I just know what I like). But I never let it trouble me much.  I could kind-of see how melty clocks might meld with memory -or not.

And "Not" seems to be the case with me.

I bought a book the other day. Reading the description and the first few pages in the store, I thought this sounds like my kind of book and then I thought I wonder why I have not read it before? But had I read it before I would have recognized the first few pages and characters, right?  I generally have an uncanny memory for this type of thing.  So I shrugged and bought the book. New. Full price.

Well I took the book home. And then I realized that I had read it before. On page 248 I realized this. Nonetheless, I kept reading because my memory of the book was very hazy. Almost nonexistent, in fact. Entire characters and subplots had been forgotten. Actually, most of the main plot had been forgotten, too and I was kind of curious as to why?  As a writer, I wanted to know what caused me to completely forget the book: Was the writing so poor that it was utterly forgettable (I don't think so)? Were the characters so poorly drawn?  Well... yes, they weren't great.  Kind of cliched and predictable. But that wasn't it. I think it was the almost total lack of visual description contained therein. I had barely any clue what the characters looked like and I had no feel at all for the settings, despite how rich I knew they could have been..

I realized that I am a very visual learner. I see book in pictures. I don't know if this is true for most other people, but no matter how many times I see -say "Wuthering Heights" in some screen adaptation, it is always *my* Kathy and *my* Heathcliffe that I see when I read the book. No actors can become those characters for me.

I was somewhere in the 300s when I remembered whodunnit.  And near the end of the 300s I remembered the address of the guy whodunnit. Before it was revealed in the plot.  How can I forget virtually an entire book but then remember a street address that was in said book?  What kind of Swiss Cheese has my memory become?

And so all this has gotten me wondering about the persistence (or otherwise) of memory.  And of course I thought of Dali.  And I don't really know ultimately know what one has to do with the other except it is nicer to think of Dali's work than to fret about my lost brainpower.  And maybe that was his point?  Who knows?

But then I realized that the author has likely gotten the last laugh in all of this. By writing a book that was ostensibly interesting but ultimately completely forgettable, he had conned me into buying it twice.  That would never happen to a Caleb Carr or a Wally Lamb. But it is a neat trick in a stomach-churning kind of way.

...and mediocrity is rewarded (no matter how inadvertently). Again.

Unfair, isn't it?