Friday, December 26, 2014

I’m still here…

Wow — it has been a long time since I wrote something for this blog. Ouch…

My primary excuse is that I’ve been swamped teaching User Experience Design for General Assembly, something I began to do at about the same time as my most recent post in April. Most of that teaching has been of the immersive course, a 10 week, 5 days/week, 8+ hours/day intense adventure. I’ve written about teaching the fall cohort in “Disrupting the UX design education space.” It is hard to do much else when teaching that course.

However, I have done a few other things, including starting and running the San Francisco Bay Area chapter of Medicine X. I’ve written about that elsewhere; I probably should have included that post in this blog as well.

Attendees of events of that chapter have had the opportunity to hear the stories (and analyses and calls to action) of others. But during the Medicine X conference in September, I recommitted to telling my story, largely because of a talk given there by Marie Ennis-O’Connor (@JBBC). Here are a few tweets from the conference that reveal what prompted my recommittal:

Oof… Had I begun to worry about how I would be judged?

I’ve just completed reading “Lean In: Women, Work, and the Will to Lead.” In it, Sheryl Sandberg talks about when she struggled with the concern of how she would be judged if she were to continue talking about gender bias and about the time when she learned that she “should keep speaking up and encouraging others to do the same. It is essential to breaking the logjam. Talking can transform minds, which can transform behaviors, which can transform institutions.”

During the Medicine X conference, I tweeted:

But just when was I to find time to share more of my story or my story more? In my teaching and other writing, I do include short references to my story and relevant analyses and calls to action for user experience designers working in healthcare, but…

Yesterday, I ate my Christmas meal at the St. Vincent de Paul Society dining room where free meals are served to those in need. I go there for lunch once or twice a year, usually on a holiday. I used to eat there almost daily when I was living on the street, an experience I’ve documented in this blog twice (here and here) and elsewhere. Now I go to remember that experience and to once again rid myself of fears and misconceptions that build over time in this society when living mostly removed from that way of life. And this all reminds me of how my contributing to addressing homelessness was once very important to me as well — see, for example, “Reflections on gratitude.”

How the hell am I supposed to do all that I want to do and be effective at any of it? Obviously, I can’t, but I still care. I’m still making a contribution to addressing the ills of the healthcare system (see above). I’m not doing all that I wish I was, but I’m trying. And I’ll continue to do so.

I’m still here.

Wednesday, April 30, 2014

Still angry after all these years

I got to share a part of my story earlier this month when I spoke to students of a Design for Health course offered by the Stanford University School of Medicine. The focus of the particular class at which I spoke was design with empathy, and I shared the stage with IDEO’s Annie Valdes. My presentation was constrained by the rules of Pecha Kucha (i.e., 20 slides shown for 20 seconds each), but I also moderated the Q&A.

As you’ll see and hear, much of my talk referenced what I did subsequent to the main part of my health(care) nightmare. I described some of what I’ve done to have an impact on the needed redesign of the healthcare system and the patient experience; developing empathy is a significant part of that story.

Here is the video. A few of my initial words didn’t quite make it onto the recording. :-(

(Coincidentally, Annie’s talk on design research was akin to one I gave 5 days earlier to my user experience design students at General Assembly.)

Tip of the hat to Paul Simon whose song title I modified for the title of my short talk. (Yes — I’m still angry after all these years. But…)

Tuesday, February 18, 2014

Not giving up, and giving forward

My most recent post in this blog was about a powerful book -- Brain on Fire: My Month of Madness -- detailing Susannah Cahalan's long quest to overcome multiple, terrible misidiagnoses by healthcare professionals. Since that post, I've read two more books of relevance to this: one very similar, one (seemingly) very different.

In the very similar book -- Brain Wreck: A patient's unrelenting journey to save her mind and restore her spirit, Becky Dennis describes her 27 month journey through multiple misdiagnoses. Hers was yet another case where a diagnosis of mental problems came early. However, as Becky correctly asserted, "It's all in my head, but I'm not crazy."

As with Susannah's experience, so much of Becky's experience of her illness and the healthcare system was similar to mine. In Brain Wreck, Becky does a particularly good job at revealing her private thoughts along her journey. Some that particularly resonated with my thoughts along my journey:

  - her reaction of shock and disbelief to the initial diagnosis -- "dumbfounded," and its ramifications: 
      o "the embarrassment and shame associated with each time the doctors told me 'it's all in your head.' Since then, I approached doctors cautiously, afraid they would dismiss me."
      o "I refused to go back to the hospital, in fear of being treated like a mental case." 

  - "My neurological challenges made me think life was ending ... and quickly."

  - her frustration and worry: 
      o "I'm tired of wondering what's wrong with me. Wondering if I'll ever get answers that make sense."
      o "I felt failed by the medical system. ... Scared to discuss the neurological phenomenon much further. I don't think anyone believes me anymore."

  - "I just want to be me again."

  - months later: 
      o "It shouldn't have been this way. It shouldn't have been such a struggle."
      o "Scares me that it could happen again. I live in fear that if it happens again, it will be with greater intensity or consequence."

  - on meeting others who had similar experiences: "Oh my gosh. I've met my new family. These people totally get me. The experience of meeting other survivors is healing. Motivating. Less isolating."

The final chapter of the book includes an exploration of why doctors misdiagnosed her for so long. She explains that unless doctors have seen her disease in practice, the text book detailing it is long forgotten, too rare to be on their radars. Also, many patients are misdiagnosed, because the symptoms can be attributed to another diagnosis; doctors stop searching for a diagnosis when they find something that seemingly fits. Or as she stated earlier in the book: "(the doctor) treated me like a head case when he couldn't figure it out."

The final chapter also includes "20 Lessons I Learned the Hard Way." Here is a subset: 
"1. Trust your gut: You're the only one who knows how you really feel. Even if you can't put a finger on it. Honor yourself by listening to what your body tells you. 
2. Be your own advocate: You are the only one managing your healthcare. Even when you run across the medical professionals who have a strong interest in helping you find answers, it's still up to you to take the next steps or to seek additional answers until one fits. You are not their responsibility. You are your responsibility. 
4. No one knows everything - not even doctors
6. Join an online support group: I can't emphasize enough the healing aspect of interacting with others with similar health issues as you. 
9. Track symptoms
11. Prepare questions in advance: Organize questions in order of importance. Tick them off the list as you and your doctor talk through your condition. Don't be afraid to speak up if they aren't all answered. 
14. Learn to say 'no'
15. Take notes: It's your medical appointment. You are paying for it. And you deserve the benefit of notes to refer to later to better absorb the information once your emotional distress has declined."
See her blog post, "Patients ... Advocate for Yourself" for a related list.

Scott Adams, creator of the Dilbert comic strip, wrote a very different book entitled, "How to Fail at Almost Everything and Still Win Big: Kind of the Story of My Life." I acquired a copy of this book unexpectedly and wasn't sure I'd read it, but I'm glad I did. I most definitely didn't expect to find a story therein of relevance to this blog.

Embedded in the book is the gripping story of Scott's 3+ year inability to speak aloud to other people. No doctor was able to help him, and he, like Becky, suffered through multiple misdiagnoses, the first (again) of which was that he had mental problems. Scott refused to give up.

What was he to do? " could I find a name for a condition that was unfamiliar to two ear-nose-throat doctors, two voice specialists, a psychologist, a neurologist, and my general practitioner? There was only one creature smarter than all of those doctors put together: the Internet."

Scott used the Internet and succeeded in identifying his condition, which enabled him to find a doctor who knew the condition. He made an appointment.
"Within ten seconds of opening my mouth in her office, the doctor confirmed the diagnosis. I had a classic case. 
'What's the cure?' I whispered. 
'There is none' she replied. 
But that isn't what I heard. The optimist in me translated the gloomy news as 'Scott, you will be the first person in the world to be cured of spasmodic dysphonia.' And I decided that after I cured myself, somehow, some way, I would spread the word to others. I wouldn't be satisfied simply escaping from my prison of silence; I was planning to escape, free the other inmates, shoot the warden, and burn down the prison. 
Sometimes I get that way."
(An increasing number of patients with poor experiences of the healthcare system seem to get that way.)

And cured he became, and spread the word he has.