One Sick Mother

I Shouldn't Know..

...that Caster Semenya may (or may not) have male sexual organs internally.

As Ms Semenya and I are not related, in a relationship, and I am not on her medical team; I have absolutely no need or right to know her medical details.

And it is none of my business whatsoever.

I should not be bombarded with medical details about her internal organs -details either real, rumored or  speculated- when I switch on my telly or open my e-mail. 

I just shouldn't know anything at all about her medical condition unless she says it is OK.

Period.

That I even know there has been speculation is wrong, wrong, WRONG.

It is a huge invasion of her privacy. Invasion on -quite literally- a global scale. And whichever persons at the IAAF and other organizations who are responsible for (grossly mis-)managing this debacle and leaking information should be made an example and jailed for a long time.

I'm serious.

A person's gender is probably the most deeply-held aspect of their identity. More than their name or their immediate family, a person's perceived gender is a huge key to who they are. And indeed to how the world interacts with them. Ask anyone with a gender identity disorder, or indeed anyone who cross-dresses for work or play, and they will tell you that they feel, act, walk, talk and are treated very differently depending on which gender they are projecting at a given time.

And if you speak to any transexual or cross-gender person who has had to deal with being "outed" in public, you will understand that many people out in the world -especially men, have a very, very, very difficult time comprehending and dealing with ambiguous gender.  In fact, many men seem to feel threatened and will respond with hatred and violence. I have seen this reaction firsthand: When I was younger, a couple of my friends were tranvestites (i.e. a person who dresses the the clothes of the opposite sex. Two of my friends were men who dressed as women. One was actually pre-op transsexual). I saw how men could switch from sexual interest in my friends to outright screaming hostility (maybe feeling that their own gender was somehow threatened?) in the blink of an eye. It was quite scary to witness.

I can't imagine what it would be like to live.

I believe that the very poor handling of Ms Semenya's case may actually put her life in danger. Some people have speculated that news like this may put her in danger of deep depression and of taking her own life. And while I see their point, I somehow doubt she would off herself. She seems too centered for that. 

I feel the greater threat to her life may come from third parties; from people who feel they were somehow deceived or cheated by Ms Semenya simply being who she is and doing what she was obviously born to do. This threat is larger, more diffuse and much more difficult to defend against.

And even worse: she comes from South Africa, from a place where people are often considered cursed or "bad luck" because they are different. A place where Albinos face discrimination and marginalization. And now Ms Semenya -who is only 18- has this great big DIFFERENCE" question mark over her head. And even if time proves this to be a big red herring, you can't un-ring the bell on this stuff. She will forever have to prove herself. As she now a high-profile person with a potentially rare difference,  who lives on a continent where albinos and some others with differences are killed and their body parts sold for superstisious reasons, can the IAAF, who originally started this whole mess, now guarantee her safety?

No. I thought not. Like I said, Someone should be locked up for this.

Elizabeth at Screw Bronze wrote about the Semenya case recently, making the point that male athletes are not subjected to the kind of degrading scrutiny of their gender as females are. And she is right.

But rather than focus on the inequities of gender (which are rampant). I feel that really this case is about medical privacy.  Here in the US. a person's medical records are protected by law. By law, a person has a right to their own medical file. Doctors are not allowed -by LAW, to share a patient's medical details with anyone unless the patient OKs it first. I think there are fuzzy areas with minors and people who are not capable of giving consent -say if they are in a coma. But overall, the rules are pretty clear. And Ms Semenya is neither a minor nor in a coma. She is perfectly able to assign or withdraw consent to share her medical history.

But was consent sought and given?  I seriously doubt it.

I don't know much about medical laws in other countries -or indeed about international athletics. But I know right from wrong.

..and this is all wrong.

Wrong in so many ways and on so may levels that I can barely comprehend the wrongness of it all. In fact. I think we may need a whole new scale to measure "wrong" based on this incident.

In the end it boils down to this: I know too much about a South African stranger. I should NEVER know about a person's  sexual organs unless that person says it's OK for me to know. 

And Caster Semenya didn't give me permission to know.

That's the bottom line.

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.