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22 May 2013 @ 08:26 pm
Update: I am revising my memoir entries at another blog I have on wordpress: http://tapati.wordpress.com/

All of my memoir posts and other original posts are copyrighted. You are welcome to provide a link to my posts with a short excerpt to catch someone's attention, just as I do with others' material, but please don't reproduce entire posts. Thank you!

If you have followed the link from my guest posts on the No Longer Quivering blog, you may be interested in my other memoir entries. Please keep in mind that these are rough drafts intended to establish the sequence of events and reveal some of the themes of my writing. The finished product may look very different. I am also not putting everything online for obvious reasons.

If you find my memoir posts interesting, please consider supporting my writing efforts by using the Paypal donation button located on the right of my journal pages. Thank you so much.

22 May 2023 @ 02:22 pm
City lights can be structured to avoid the haze of glare that obscures our stars. Learn more.

26 December 2015 @ 07:16 pm

I wish I had seen a column like this when I was trying to understand a former friend's way of talking to me after I was diagnosed with multiple forms of chronic illness. I wouldn't have felt so alone with my conflict, for one thing, and might have gained more insight into her behavior. I was so confused and hurt and her challenges of nearly everything I said about my own life left me feeling worthless and stupid. I wish also that I'd read up on gaslighting.


"S. has been there for me, even when we were in different countries this past couple months. Now that we are back in the same place things have gotten… weird. Her new attitude is “question everything”, because she wants to be a teacher and apply that philosophy everywhere. Yet to me, her questions don’t seem to be coming from a place of wanting to know or understand, but to get me to self reflect. She has also said it is important for her to question me so I can “have a better understanding of the larger situation”, especially because I tend to “overreact”. It may sound dramatic, but I feel like I’m being interrogated a lot of the time. I don’t want a life coach that inadvertently victim blames me (which is why I go to my super lovely therapist), I want nerd out with my friend.

"I told S. that I love her ability to ask good questions, because it means we have really excellent dialogues, but that sometimes just jumping into questions about my personal issues without starting with validation or support is too much for me, and she responded with 'I can’t change who I am.' "
17 December 2015 @ 09:42 am
Alive: https://www.youtube.com/watch?v=t2NgsJrrAyM
I Had Cancer – And Medical Fat-Shaming Could Have Killed Me http://everydayfeminism.com/2015/09/medical-fat-shaming-danger/

Basically, young woman coughs violently from senior high to her twenties and keeps getting told oh it's an infection, here's antibiotics, lose some weight or it's GERD lose some weight while getting sicker and sicker. It was cancer all along. It's amazing she's alive.

Why investigate further when you can diagnose fat and feel like you've done your job.

On a related note, a woman just told the story in comments yesterday that she went in with appendicitis but docs were just sure she was pregnant or had an STD instead because she was young and black. Anyone knows time is of the essence when your appendix might burst--and of course hers did. :/

I don't expect all doctors to be magically free of bias. I DO expect them to question their bias regularly. How would I diagnose this if the patient were white, were thin, were straight, and so on?
28 August 2015 @ 04:50 pm
“Do not do what someone else could do as well as you. Do not say, do not write what someone else could say, could write as well as you. Care for nothing in yourself but what you feel exists nowhere else. And, out of yourself create, impatiently or patiently, the most irreplaceable of beings.”
- André Gide
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25 August 2015 @ 06:11 pm
I raised the issue with AWP (Association of Writers and Writing Programs) over a year ago:

"August 17, 2015

"Dear Conference Attendee:
AWP welcomes constructive commentary on how we can improve our services to all conference attendees, no matter where the conference is held. Recently, we received inquiries concerning accommodations for conference attendees with accessibility needs."


(See also: https://www.awpwriter.org/magazine_media/writers_news_view/3812/response_to_members_concerns )

My email to AWP:

March 3, 2014

Subject: Accessibility for future conferences

Dear AWP Conference Organizers,

I am aware that there are some writers who have attended your conference that had issues aside from wheelchair accessibility. I suspect there are more who either don't come or don't speak up because they are uncertain, as I often am, if their particular issues could be accommodated and because they feel some pressure to look "professional." While this doesn't affect me personally since I'm not a member, I do have a resource you might appreciate from another type of conference and how they handle various types of accommodations and signal to their attendees that they are ready and eager to do so. (I am more likely to request an accommodation if I see that there has been some thought put into my particular needs already so that I am not being "a bother.")


Just one of the issues that they've provided for is people who may get overwhelmed by the amount of sensory stimulation and people, those who have panic attacks, agoraphobia, claustrophobia and so on. I am aware that one of your attendees had this issue and my own adult daughter does too. Here is how WisCon talks about and accommodates people with this issue:

"WisCon is an energetic, some say wacky, environment. Finding stimulation is easy: here are options for managing stress and sensory overload.

"If you need quiet immediately, take an elevator to floors 7 through 11. The elevator lobbies there have comfortable chairs and usually no people.

"We've created the Quiet Place for those of us who need a break during the con. It's a small dark room on the 2nd floor between conference 1 and 2, with room for up to six members, furnished with comfy chairs, padded benches, footstools and a toilet. It's a good place to catch your breath, listen to your heartbeat, ruminate, and contemplate. The Quiet Place works when we respect its boundaries: please, no talking within. If there's someone waiting for a space, yield yours after 30 minutes. Breastfeeding mothers are welcome in the Quiet Place."

While it is not possible, as WisCon itself notes, to perfectly accommodate everyone given some have conflicting needs, it is possible to make the experience a great deal less stressful and allow people who may be new to their disability and asking for accommodations to feel very welcome to do so. I know I've gone through a lot of stages in my own adjustment to requesting disability access. And when a site seems to indicate that they've only thought about wheelchair access I am hesitant to bother them with special requests.

Thank you for your consideration of this matter. I am sure you want to make your conference comfortable and open to everyone. It's difficult to think of every situation and often requires a panel of people with disabilities (as I believe contributed to WisCon's policies).


Tapati McDaniels
02 July 2015 @ 02:48 pm
Doctors Tell All--And It's Bad: A crop of books by disillusioned physicians reveals a corrosive doctor-patient relationship at the heart of our health-care crisis. http://www.theatlantic.com/magazine/archive/2014/11/doctors-tell-all-and-its-bad/380785/

It's interesting to hear the doctor's side of why doctor-patient interactions are so often strained when not actively hostile. There are so many changes that need to be made in our system.

See also http://www.amazon.com/Patient-Will-See-You-Now/dp/0465054749/ref=sr_1_3?ie=UTF8&qid=1435869222&sr=8-3&keywords=patient&pebp=1435869238002&perid=1G2YMT5N9DGSPXAZHP54
24 June 2015 @ 08:19 pm
If you're tuned into the 24 hour news cycle you hear a lot about violent crime. There's an old saying "if it bleeds, it leads." Drama gets ratings or sells papers. Tune into Good News Network if you want to hear about great things that are happening.

The truth is that violent crime rates have been dropping steadily: http://www.wanttoknow.info/g/violent_crime_rates_reduction "Did you know that violent crime rates of 2010 were 1/3 the rates of 1994?"

Some theories about why violent crime has declined so sharply: http://www.theatlantic.com/features/archive/2015/02/the-many-causes-of-americas-decline-in-crime/385364/

Some think removing lead from gasoline and stopping its use in paint helped reduce crime since it attacks key parts of the brain in growing children: http://www.motherjones.com/environment/2013/01/lead-crime-link-gasoline

But what about crime in terms of race?

FBI, arrests by race 2012: https://www.fbi.gov/about-us/cjis/ucr/crime-in-the-u.s/2012/crime-in-the-u.s.-2012/tables/43tabledatadecoverviewpdf

FBI, arrests by race 2013: https://www.fbi.gov/about-us/cjis/ucr/crime-in-the-u.s/2013/crime-in-the-u.s.-2013/tables/table-43

Fact checking claims about race and crime: http://www.tampabay.com/news/politics/fact-checking-claims-about-race-crime-after-ferguson/2208263 This site makes an important point: people are killed by people they know, by and large:

According to the U.S. Bureau of Justice Statistics, 93 percent of black homicides were indeed committed by other blacks between 1980 and 2008. In 2012, the most recent data posted on the Web, the figure was 91 percent.

It's important to note that whites were almost equally likely to be killed by other whites. According to government data, 84 percent of white homicides were committed by whites. This was true between 1980 and 2008 and in 2012.

Experts have stressed that this is not surprising because most homicides occur among people who know each other.

More on racially based statistics: http://www.nytimes.com/2014/09/08/opinion/charles-blow-crime-bias-and-statistics.html?_r=0

In conclusion, if you are making a good faith effort to understand why the death of some black people are national news but white people killed by black people is not as often the focus, consider that the normal course of events is for a black killer to be immediately arrested and locked up and for a white victim not to have their personal history combed through for reasons why they don't count as real victims. The opposite is usually the case for black victims of white killers. The ideal would be a justice system that treats all killers and all victims the same. In the case of rape, again most rape occurs between members of the same race and in fact, the majority of rapes are by people known to the victim.

There has been some discussion in Australia between patients and doctors that resonates with me as a patient in the U.S. with chronic illness. I've been having a particularly frustrating time in the past few years with many (though not all) of my doctors and HMOs. I wasn't even allowed into the chronic pain program at Kaiser because I rely on medication such as hydrocodone occasionally to help manage my pain. I cannot tolerate NSAIDS however much I yearn for them. Nor do I take any medication on a daily basis. I was told they could help me detox. But I do not have a physical dependency or addiction to my medication since I don't even take it more than twice a week. (Migraineurs are prone to rebound headache if we take pain meds more often than that. And rebound headache is like the tortures of the damned.) I save it for the worst migraines and take it to get some sleep.

If there is one request I could make of doctors everywhere, it's that they become comfortable saying "I don't know what's wrong. I'll keep trying to figure it out." Instead of deflecting their uncertainty and insecurity onto the patient, "Maybe you need to talk to a therapist." I heard things like that for 22 years while they couldn't figure out that I had gallbladder disease despite classic symptoms.

Here's a group of posts that explore some of the issues of the doctor patient relationship especially as it relates to chronic illness. And I am reminded of an open letter to chronically ill patients from a doctor years ago as I read these.


I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.

I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:

Doctors often don’t know how to deal with disabilities
Doctors sometimes blame patients for treatment failures
Some doctors find it hard to accept patients as experts
Doctors don’t always communicate well.


Apparently, twisting one’s pelvis means that one is simply not trying hard enough. I was actually scolded. Yep, for not getting better. A high earning pain specialist decided the best approach was blame. The same pain specialist that had taught me about how unpredictable the nervous system can be could not comprehend that I could actually be dealing with an additional injury.

Lots of shock and confusion.

He would not allow me to continue working with the pain management team that had been helping me so much (physiotherapists, occupational therapists, counsellors) because, you know, I was just crazy. I was so crazy that he thought it OK to blatantly lie about my program ever having included outpatient sessions. It was an odd thing, that lie, because not only had other people been present when the program was initially discussed, but I had already attended outpatient sessions.

As far as I know, it’s really difficult to attend things that don’t exist.

“You need to see a psychiatrist.”

I would receive no more help from him, or his team, unless I exclusively saw the psychiatrist.


My name is Carly Findlay. I have Ichthyosis form erythroderma - a severe skin condition that is genetic and to date, no cure. The doctors didnt expect me to live long - but at 30 years, I am still here! It affects my skin, my eyes, ears, temperature regulation and digestive system. I get itchy and am susceptible to infections. It is extremely painful most of the time I cannot describe the pain. I spend a lot of time at the hospital - in waiting rooms mostly - seeing dermatologists and other specialists, and receiving treatment on the ward when I get very sore. While it is medically challenging, the social challenges can be far more difficult...

Often when people see me, they ask me what's wrong with me. Whether there is a cure or an operation. Sometimes they state they couldn't handle looking the way I do.

They assume that my life must be much worse than theirs.

I have just handed in my thesis for my Masters of Communication at RMIT University. My thesis was on the way blogging helps those with a chronic illness form a sense of identity. One of the texts I studied in my research was Pride Against Prejudice by Jenny Morris. Jenny Morris writes about the experience of being different.

Jenny examines the way physical difference “gives non-disabled people the right to invade our privacy and make judgments about our lives”.

She outlines some of the assumptions and prejudices that society makes about those with disabilities and physical differences. These assumptions and prejudices that apply most to me include “That we crave to be normal and whole”, “that we are naïve and lead sheltered lives”, “that we constantly suffer and that any suffering is nasty”, that we can't ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are 'just putting a good face on it'', and “that if we are particularly gifted, successful or attractive...our fate is infinitely more tragic than if we were none of these things”

Every day in the course of my work, I come across patients, doctors, nurses, and allied health professionals, who work tirelessly to transform the traditional doctor/patient paradigm – one in which doctors hold all the answers, and patients must comply with their medical expertise. A few months ago, David Gilbert, yet another passionate and outspoken patient advocate (yes, there are many!) took an analytical, evidence-based approach, using his research as a CLAHRC NW London fellow, to outline seven key benefits patients bring as partners in healthcare. It’s deeply depressing therefore this week to have the face the reality that for all the patient-centred care rhetoric that abounds, we are still a long way from recognizing that health expertise lies outside as much as inside medical circles. We can’t just talk about a commitment to patient centred care– we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.

The question now is how do we start to bridge that divide in tangible and meaningful ways?

That last referred to a USA Today article by a Ph.D (not a doctor) railing against online patient reviews and giving the opinion that having a good interaction with a doctor was not a valid criterion for choosing a doctor, therefore patient ratings shouldn't matter. (I guess we should all opt for the cold, superior-acting doc with the best track record rather than someone we can actually communicate with. But how does he or she get that track record if they never listen to patients long enough to get sufficient information from them?)