Life as an Extreme Sport

Category: …and everything else

Mostly everything else in a brain-academic way.

A Million and One Little Pieces, Minus the Million

...and everything else, blog as therapy, Duct Tape and Prayers, life and living

I expected to fly into approximately a million little pieces, give or take, by about 3pm Friday afternoon. In fact, I was so convinced that this was going to happen I began pulling things together to go home, because I am constitutionally incapable of falling apart at work, and I figured the strain of that was going to be more than it was worth (especially given the amount of sick time I still have). It’s not even so much anxiety of what may be, as it is anxiety at whether or not there even is an issue. There’s a bit of a running joke in my life right now that I generally make a decision and then act on it within 24 hours, and if I don’t, things get Not Pretty fast. Right now, I’m stuck in that zone of needing to make decisions but not having enough information to do so, and I anticipated it doing a real number on me, leaving me gnawing on my liver with worry and spinning into tighter and tighter circles of bad thoughts.

To my surprise, that hasn’t been the case.

I think that a large part of the reason I’m not looking for a good chianti to accompany my doom and gloom is because I’ve been learning better coping mechanisms. A few weeks ago I watched someone “crowd source” an emotional/personal problem. This was a cute term for a simple concept: reaching out to friends for support. And frankly, within my life – and experiences over the last half a dozen years – about the last thing I would have ever considered doing, had I not seen how beneficial this crowd sourcing was firsthand.

It would have been very easy to simply sit in the middle of my bed, squeezing a cat or – if they got irritated, a stuffed animal – and rocking, between sleep cycles, but that doesn’t really help anyone, let alone help me. In another of what appears to be a series of hard events, I reached out and said “here’s what’s going on, by the way,…” and received back precisely what I needed: quiet support, from being asked details of everything to come to getting a recommendation for Booker’s and the distraction of getting to the bottom of the bottle, and everything in between.

Bravery and anxiety are two words that have been repeated a lot to me the last few days. I must be so anxious, I am so brave. They’re understandable and kind, and in that order – but not entirely accurate. I am certainly anxious if I focus and dwell, and I suppose I’m brave – at least by the standards of the people who say so, although I certainly don’t see it as such. But mostly, though, I’m surprisingly okay. And I think a lot of this is because I took the time to simply be honest, to not hide behind the social niceties that say we don’t talk about it when we’re maybe sick, waiting on a diagnosis, hanging out in limbo – and especially if it’s a limbo around lady bits because ew, who wants to talk about THAT in polite company?1

And if you can manage, I highly recommend having someone around whose voice alone soothes you, and whose conversation successfully distracts you. I am fortunate enough to have someone in my life who has this, combined with “being there,” down to a science, who can easily shift between talking about fear to discussing effective bioweapons disbursement,2 pop culture and movies, or even traditional religious things like, say, seppuku.

Then again, there’s also the sheer practical: I’ve been getting by on only about 90-120 minutes of sleep for the last three or four weeks; by Saturday evening the pleasures of seeing friends who had already planned on being in town, combined with other stress from my family, knocked me out and I actually got a solid seven hours of sleep.

Tomorrow is a work holiday luncheon; I go straight from there to the ob/gyn. Here’s hoping they can do the biopsy immediately, and that I’ll have results before Christmas – for a lot of reasons, sooner is so much better than later. Not in the least of which is, that while I am not chewing on my liver, my nails are another story entirely.

Yet Another Rape Apologist in a Position of Power

...and everything else, Politics

It’s been a banner year for rape in the media, and apparently December just felt left out. Joining the likes of:

is Orange County Superior Court judge Derek Johnson, who said that the following litany of amazing things when refusing a heavier sentence for a man convicted of rape by a jury of his peers:

I spent my last year and a half in the D.A.’s office in the sexual assault unit. I know something about sexual assault. I’ve seen women who have been ravaged and savaged whose vagina was shredded by the rape. I’m not a gynecologist, but I can tell you something: If someone doesn’t want to have sexual intercourse, the body shuts down. The body will not permit that to happen unless a lot of damage is inflicted, and we heard nothing about that in this case. That tells me that the victim in this case, although she wasn’t necessarily willing, she didn’t put up a fight. And to treat this case like the rape cases that we all hear about is an insult to victims of rape. I think it’s an insult. I think it trivializes rape.State of California, Commission on Judicial Performance

Of course, in some ways it’s unfair to lump Johnson in with the above quotes, because his ruling actually happened in 2008. That’s okay, though — there’s an awful lot of horrible that’s been spouted off in the past, too, and he’s just clearly gravitating towards his own:

  • Stephen “rape causes women to ‘secrete a certain secretion’” Freind (1988 Rep, R-PA);Freind’s Rape-pregnancy Theory Refuted
  • Henry “the facts show that people who are raped—who are truly raped—the juices don’t flow, the body functions don’t work and they don’t get pregnant. Medical authorities agree this is a rarity, if ever” Aldridge (1995 Rep, R-NC);Lawmaker Says Rape Can’t Cause Pregnancy
  • Clayton “if ‘[rape] is inevitable, just relax and enjoy it” Williams (1990 Texas Republican gubernatorial nominee);Texas Candidate’s Comment About Rape Causes a Furor
  • James Leon “concern for rape victims is a red herring because conceptions from rape occur with approximately the same frequency as snowfall in Miami” Holms (Federal Judge, 1997);In Judicial Twist, Republicans Seen Stalling Bush Pick
  • John C. Willke, a physician who was once president of the National Right to Life Committee, whose statement is astonishing and bears repeating in full:

    Finally, factor in what is is certainly one of the most important reasons why a rape victim rarely gets pregnant, and that’s physical trauma. Every woman is aware that stress and emotional factors can alter her menstrual cycle. To get and stay pregnant a woman’s body must produce a very sophisticated mix of hormones. Hormone production is controlled by a part of the brain that is easily influenced by emotions. There’s no greater emotional trauma that can be experienced by a woman than an assault rape. This can radically upset her possibility of ovulation, fertilization, implantation and even nurturing of a pregnancy. So what further percentage reduction in pregnancy will this cause? No one knows, but this factor certainly cuts this last figure by at least 50 percent and probably more.Rape Pregnancies Are Rare

People being horrible about rape, since forever.

With thanks to Katie J.M. Baker for her Jezebel post Fuck You, Rape Culture, which served as a comprehensive list of spoken justifications for rape that made the news this year.

Stop Yelling If You Want Me to Listen

...and everything else, Bioethics

Last week, I had the pleasure of attending the World Stem Cell Summit, and as is habit when I attend conferences, I tweeted my reactions to various panels I attended. Alexey Bersenev asked if I would elaborate on my rather frustrated tweeting from the panel on “The Role of States in Regulating Stem Cell Therapies,” and I agreed (although I didn’t specify the timeline of when that would happen, obviously).

This panel was a regulatory session, as were most of the panels that I sat in on. It was moderated by Kirstin Matthews, from Rice University, and the panelists were Keri Kimler of the Texas Heart Institute; Mitchell S. Fuerst, a lawyer who has represented Regenerative Sciences (Regenexx/Dr. Chris Centeno et al.) in their lawsuit with the FDA; and Leigh Turner, a bioethicist from the University of Minnesota.After needling some people about conflicts of interest earlier this year, I suppose it’s necessary to once again point out that I consider Leigh a friend and colleague, and unsurprisingly, agree with his views regarding stem cell treatments and regulations. I don’t really think that biases me against being yelled at, but hey – some people just want an excuse to nitpick.

Paul Knoepfler was also in the audience for this panel session; in his brief write-up, he called the discussion between Fuerst and Turner a “particularly interesting and vigorous debate.”

I am going to go a little bit further than that, and say that I think it was actually a really lousy panel and debate, largely because Fuerst opted to engage in what is often referred to as conversational terrorism. He relied on every “trick” in the book, including a full range of ad hominem attacks, attempts at misdirection, constant interruption and talking over both Turner and Kimler, dismissing valid criticisms with the repeated statement of “that’s not germane to this discussion,” and perhaps the one that got under my skin the most, utter loud bombast, as if shouting at the audience will simply intimidate them into agreeing with you.

In my case, it does quite the opposite. This is probably in part because I’m female, and a lot of men seem to feel that shouting loudly at a woman will intimidate her into silence, going away, or acceding to demands. Mostly it just makes me cranky and likely to yell right back — something I managed to avoid doing at the panel, largely because during the Q& A period much of the audience got up to ask Turner and Kimler questions that they were unable to address during the panel due to Fuerst’s behavior.

Turner was able to talk during the panel — at least at times — and address some of the interesting and contentious issues around the role of states in regulating stem cell therapies, and I was able to learn some more about the topic. But Kimler barely spoke, and this is too bad — she was there as a patient advocate, and given her background and experiences in Texas, with their medical board and their recent stem cell guidelines, I would have liked the opportunity to hear and understand more about the position(s) that she supports.

By engaging in bad behaviour, Fuerst undermined the position he supports regarding state and federal oversight of stem cell regulations and denied the audience not only the opportunity to learn about his position in a non-confrontational manner, but the opportunity to learn from the other two experts invited to speak.

And just to be clear, this is not behaviour unique to Fuerst. In fact, it was on display in September during the Texas Tribune Festival’s panel on whether or not the state’s stem cell policy was good for Texans.I suppose a genuinely cynical person could try to argue that it’s really Turner that’s inciting people to these levels of bombastic over-talking, but having spent time with him I can assure you that he is indeed the epitome of Canadian politeness. I find that if someone — in the World Stem Cell Summit case, Fuerst — cannot present their argument in a calm, coherent, and rational manner, I’m going to dismiss everything they say as not worth my time, if not outright invalid.This, for what it’s worth, is not something a panelist should try for, period, and it’s really something you want to avoid if your audience includes the media. I’m certainly not the first writer-type to find it irritating to be yelled at rather than engaged with. If ya can’t keep your temper under control and engage with your fellow panelists — and the audience — with the respect that they should be afforded (and that you want afforded to you), then don’t agree to sit on the panel in the first place. It just wastes everyone time, and that’s frustrating, for everyone involved.

The Many-Headed Hydra of RNL Bio, Celltex, & Why Patients Should Be Concerned

...and everything else

The latest saga in the on-going RNL Bio/Celltex saga broke Monday morning while I was at the World Stem Cell Summit in Florida: the companies have filed competing lawsuits, and it appears that all talks or partnerships between them have broken down. As usual, Paul Knoepfler has a really comprehensive summary on his blog, including the legal documents filed by both RNL Bio and Celltex.

I’ve spent some time sifting through the legal documents, and the claims on both sides are interesting (and at times a little outrageous). As I’m not a lawyer and my knowledge of Texas law is basically non-existent, I’m hesitant to comment on the accusations at large. What does interest me, though, is two specific things that have come out of these lawsuits:

  1. RNL Bio is holding patient stem cells hostage;
  2. Patients themselves are not aware of the RNL Bio/Human Biostar connection to Celltex.

The first issue seems to fall back into the legal issues that I am so far from qualified to comment on, but the gist of it appears to be that RNL Bio/Human Biostar is refusing to turn over the banked stem cells that they’ve manipulated, banked, and have been holding until Celltex pays them for services rendered. Additionally, RNL Bio/Human Biostar seems to be portraying this as a behaviour of concern because they do not believe Celltex has a laboratory where the stem cells can be safely transferred (see the bottom of page three), and that giving the stem cells to Celltex would be tantamount to allowing contamination if not outright damage.

Celltex has fired back, accusing RNL Bio/Human Biostar of extortion (see the bottom of page eight) – and it certainly seems like hostage-taking might be an appropriate analogy.

Clearly this is going to be an asset that the courts will decide ownership of, and the good news here – at least for patients – is that as long as RNL Bio/Human Biostar is attempting to leverage money from Celltex in this court fight, the stem cells should be safely maintained. (I would not be surprised if there was an injunction against RNL Bio/Human Biostar preventing them from doing anything to the cells, although I’ve not looked that far yet.)

The more interesting thing that appears to be coming out of this, though, is that patients themselves are unaware of the RNL Bio/Human Biostar and Celltex connection. This, I suspect, might explain some of the animosity between patients/advocates and bioethicists in the last year. For a lot of the folks in bioethics that I know, the RNL Bio/Celltex connection evoked a response akin to “oh god, another head on the hydra” – something that would make little to no sense to patients and advocates unaware of RNL Bio/Human Biostar’s history.

The hydra metaphor is apt for RNL Bio, who is the parent company (as far as anyone can tell) of Human Biostar. RNL Bio appears to operate under a variety of company names, including RNL Bio, Human Biostar, RNL Life Science, Cellure, Dr. Jucre, and combinations therein. Beyond their own companies, they form tight partnerships with external businesses, as with Celltex – and it seems within this, Celltex’s patients are not aware of the difference between the companies or that the companies are different. In other words, patients appear to believe that the manipulation of their stem cells is happening under the auspices of the company – Celltex – that they’re talking to and interacting with, rather than the company – RNL Bio/Human Biostar – actually behind the process.

And in many cases, it might be valid to say “so what?” After all, I probably couldn’t tell you what laboratory handled my blood work at my last physical; that was something my physician deemed necessary and magical people who handle medical center contracts made happen without my knowledge or input. But in this particular case, I think it’s more accurate to compare this adipose-removal and stem cell isolation process to compounding pharmacies, where you do indeed want to know about the track record of the compounding pharmacy (especially given the recent issues with NECC, fungal outbreaks, and meningitis). After all, cells are in theory being extracted and then prepared for being placed back within a patient’s body – and as such, it becomes important for the patient to be aware of the history of the place doing such preparation.

In the case of RNL Bio, it is not the best history in the world. Off the top of my head, there are the following issues:

  • Tangling with the Korean FDA over the Dr. Jucre stem cell cosmetics line;
  • Accusations of bribing Korean officials to guarantee favourable stem cell-related laws;
  • Concern that their prepared stem cells have caused tumors (and several cases presented at the World Stem Cell Summit suggest that this is indeed a concern);
  • The deaths of two patients in 2010;
  • An unlawful termination suit, which may not reflect on company safety standards, but certainly reflects on the company as a whole;
  • A fraud lawsuit in California, filed this past summer. As Leigh Turner notes,

    Plaintiffs named in the lawsuit seek judgment for damages for intentional misrepresentation of fact; negligent misrepresentation of fact; false advertising in violation of California Business and Professions Code; unfair competition in violation of California Business and Professions Code; financial elder abuse; negligence; and breach of implied covenant of good faith and fair dealing.

And there is undoubtedly more that I’m simply not aware of. While the California lawsuit happened this summer, the rest of the events in that list are things that have been around a while – and are certainly part of the reason that there’s been significant concern about the connection between Celltex and RNL Bio and just what was going on in Texas.

What can appear to be a vendetta to patients and patient advocates who aren’t familiar with a situation can actually be completely justified within context, and the context here around RNL Bio – of numerous concerns about safety, grounded in known side-effects and patient deaths – matters. That patients themselves were not made aware of the connection between Celltex and RNL Bio/Human Biostar, let alone the issues surrounding RNL Bio/Human Biostar for the past going-on three years, should be of a concern to patients. Frankly, I think that’s a much bigger issue than the fact people like me – or the more legit folks like Drs Knoepfler and Turner – have made their concerns about unregulated and possibly fraudulent stem cell clinics known.

Not Domestic Terrorism, Just Domestic Violence

...and everything else, Bioethics, Politics

There was another mass shooting in the United States today, this time in Wisconsin.Again, some might note. The Sikh temple shooting in August was about 40 minutes from Brookfield, Wisconsin, in Oak Grove. As always, it’s interesting to watch what kind of narrative will unfold when these events happen. As I noted a few weeks ago, there is an unfortunate pattern to how mass murderers are both treated by and portrayed in the media. If the murderer is white, firearms regulation panic will set in and the news cycle will be dominated by the insistence that we must do more to remove guns from the public sphere, combated by 2nd Amendment rights activists.

If the murderer isn’t white, whether or not it’s covered at all — at least outside of the shooting’s local media — depends on how slow a news day it isClearly, today was a slow news day. and the victims. And it rarely triggers the sort of panicked regulation talk that accompanies shootings perpetrated by white men.I’d very much like to be proven wrong on this, by the way. If you can find media coverage — especially historical — that shows otherwise, please do pass it along. Instead, the reaction seems to be “dig for the reason.” Tonight, the police department in Brookfield gave that reason: oh, it was a domestic violence-related situation.

There we go — like clockwork, media sites are now running with this.Kudos to Reuters for not only not doing this, but also including a similar shooting in the Orlando, Florida area earlier this week. Headlines show “Wife of spa shooting suspect had obtained restraining order,” “Suspect in fatal Wisconsin shooting had slashed wife’s tires: police,” “Wisconsin police: After domestic violence arrest, suspect kills 3 — and himself,” and so on.

Perhaps most tellingly, though, is that all emphasize that the President was briefed that this was not a case of domestic terrorism. Just domestic violence. To paraphrase Kate Harding, sure it’s not terrorism — unless, of course, you’re a woman thinking of leaving a man who is abusive.I did contemplate rephrasing this to be gender neutral, because when you want to discuss people left out of a conversation, men who are abused — especially by women — are frequently ignored. So I want to take the moment to acknowledge men are quite certainly abused by women — but to also note that men are significantly less likely to be killed by their abuser. For statistics about men and domestic violence, please read this CDC press release.

This dismissal of mass shooting as just domestic violence is a dangerous narrative. Not only does it function as a smokescreen to avoid a necessary dialog on mass killings, firearms violence, and firearms control, but it de-emphasizes and legitimizes violence against women.

Every nine seconds a woman in America is beatenhttp://www.cfvc.org/Statistics.aspx. The leading cause of injury to women? Not rape, not muggings, not car accidents, but domestic violence.http://domesticviolencestatistics.org/domestic-violence-statistics/ Nearly 40 percent of women seeking care in an emergency department are there because of domestic abuse.Rand, M. Department of Justice. Violence related Injuries Treated in Hospital Emergency Departments. Bureau of Justice Statistics. August 1997. More than three women a day in the United States are killed by an intimate partner.http://domesticviolencestatistics.org/domestic-violence-statistics In 2007, the last year the FBI has data,http://bjs.ojp.usdoj.gov/content/pub/pdf/fvv.pdf 1,640 women were killed by their partner.

Women are 70 times more likely to be killed in the two weeks after they leave a situation of domestic violence than any other time.http://www.dvipiowa.org/myths.htm.

If this isn’t a systemic use of terror as a means of coercion, then I’m not sure what is.

I would welcome a continued and sustained debate about firearms violence in the United States. Likewise, I would welcome a serious and sustained public debate about domestic violence. Both of these issues are serious public health concerns, and should be engaged at a level that does not fade when the news cycle rotates. What I do not welcome is what the narrative is once again devolving in to: the dismissal of violence based on circumstance, relationship, and ethnicity.