Thursday, January 27, 2011

The story begins

I do not know for sure when and how the parasite entered my body. I have my theories, but pinpointing the how and the when is difficult, because parasites can reside inside of one's body for years before they begin to do noticeable damage. I start the story during the month of December 2008, when I began to experience symptoms.

The symptom I experienced that I believe was the very first involved my inability to get to a restroom on time for a bowel movement following a meeting with a local Sr. VP of User Experience. The meeting went delightfully well, so it wasn’t because of the meeting! Soon after, I began to experience arrhythmia in the form of my heart racing unbelievably fast throughout the night, making it impossible to sleep. For some reason, this prompted no concern within me, which might have been an early symptom of my brain not functioning properly.

A few words about what was happening in my life in December 2008… During the first week of December, I flew to the east coast for an interview for the position of Director of a highly-regarded Design and Usability Center. I was one of three finalists for the position, and the interview went very well as I was “by far” their first choice for the position. I was delighted by this and planned to accept the position, but for odd reasons, I delayed a response.

Prior to this job offer, I was having a wonderful time working as Co-Editor-in-Chief of interactions magazine. I was active athletically (e.g., skiing near Lake Tahoe). I was also seeking clients and developing a business opportunity with a business partner, but the job on the east coast was perfect for me, and I was ready to leave the SF Bay Area. However, during December, I oddly started a romantic relationship of a sort. I say “of a sort,” because the romance was entirely one-sided – my side. Yet, I was smitten, and I don’t believe that would have been my normal response. It was certainly not an advisable response; indeed, this woman made it clear that she had minimal interest in me as a person. I was behaving as if I was somewhat bi-polar, and, incredibly, this relationship was the primary reason I ended up turning down the wonderful east coast job offer. To turn it down, I made up some very bizarre professional reasons, which probably made them happy I turned down the job! All this was incredibly crazy.

Another early symptom was my first seizure. During a client lunch in January, my entire body shuddered and I was unable to talk for several minutes. Fortunately, I was with my business partner, who filled in the silence. Additional seizures followed, similar in nature to the first, in a variety of places (e.g., in the Mill Valley library, in my car while I was driving through Oakland, etc.) during January and later.

In February, I suffered a great pain in my abdomen. This was the first time I was smart enough to seek medical advice, but a call to my GP revealed that he had dropped me as a patient, because I hadn’t seen him since 2002. So, I turned to Pepto-Bismol, which seemed to clear things up, though it took 2 days.

Things worsened, though (intestinally, mentally, seizurely), as March arrived, and I almost bowed out of a trip to the IA Summit in Memphis where I was scheduled to give a workshop with my business partner. I went, but spent most of the time in bed in the hotel and the rest of the time being a jerk to my business partner via insisting on trivial last minute changes to the workshop. Fortunately, the workshop went well, but the CHI conference and a panel I designed and was to moderate loomed on the horizon in April; I hesitated even making a plane reservation.

Unfortunately, I did make the plane reservation and went to CHI 2009 in Boston. On arrival, it was clear I made a mistake, as I wasn’t myself mentally. I arrived late, too late to attend the SIGCHI Awards dinner which all past award winners were expected to attend. My absence at the dinner – a necessity, as I shudder at what I might have said or done during the dinner – was, I believe, what prompted a couple of new award winners, the Executive Chair of SIGCHI, the Chair of CHI 2009, and others to give me looks of disgust when I ran into them. I even think the Chair of the conference might have referenced me in his opening conference remarks prior when he said some were never again to attend the conference.

A handful of others, fortunately, could tell something was wrong with me when they first saw me, but I didn’t know what was wrong, so I was not overly responsive. I think I mumbled that I should have taken the job on the east coast. I just wasn’t myself.

During the conference reception, one sip of a beer sent my mind into a spin, leading, unfortunately, to a couple of messy conversations during which I was offensive, as I had very little control over what was coming out of my mouth. Later, I told my panelists that I wasn’t myself and feared what might happen should I take the stage. Then, after spending another long chunk of time in bed, I headed for the airport and home three days early.

Something was wrong with me, and I didn’t know what to do. One thing I did do was bail on another exciting job opportunity I had managed to successfully interview for during March.

Things got much worse after I got home. I felt that I was freezing most of the time, spent the nights in a sleeping bag covered with lots of blankets, and spent days sitting in the sun. My heart still raced every so often, and most nights, I didn’t sleep at all. And my seizures became violent and much more stereotypically epileptic in nature. Mentally, I tried to force time to go backwards to prior to the start of all this so I could accept the job on the east coast to escape whatever was happening to me. Also, my mind felt like it was peeling away like an onion, as I thought back over my life to my childhood, ultimately recalling details of my youth I could not imagine that I would have ever again remembered. I felt that I was experiencing the process of developing dementia, and I thought I might be in the process of dying; I thought I could not go on living.

Amazingly, while lying on the floor of my home completely out of it mentally, I reached for my phone and called a friend. All I said was, “help.” And she came and took me to her home and listened to my gibberish talk and comforted me. After I spent the night on her sofa, she took me home. I then did something which, unknowingly, was the worse possible thing I could have done.


  1. Richard, I'm floored by the news. I had heard you were not well, plus you had mysteriously disappeared; I am glad you are starting to tell your story. My thoughts and prayers are with you and I hope for a full recovery for you.

  2. Richard,

    I'm just reading your blog, I'm so sorry that this happened to you. Medical science is often wrong and doesn't go by how we feel, but often goes by medical tests. I've been through a similar circumtance after I had my daughter in 2007 and was dealing with undiagnosed Hashimoto's syndrome and type II diabetes. I hope you are feeling better and that things are turning around for you and that you are getting the medical attention that you need to fight this.

    I remember when I first met you back in 1998 at the SIGCHI conference when I was a student volunteer and when I took your User experience management class at UCSC Extension in 2005.

    Wendy Boucher-Fischer

  3. I think I'm going through this exact experience right now but I don't know where to turn to help.

    I live in the Bay Area, intern at a landscape architecture firm and am currently trying the whole epic job search. I conducted my graduate research in Mexico and got in a bad scooter accident in Thailand which resulted in a serious infection in my foot.

    Lately (about a year after the accident). I've all of a sudden started having anxiety attacks, I feel as if my brain isn't working clearly on some days, as if my reading and processing skills are degrading. Do you have ANY recommendations for specialists in the Bay Area.

    I don't have health insurance but I have family near-by. I just need to know a good place to start.

    Please if you see this could you email me or reach out to me? My email is

    Elizabeth Tyson