My Right to Defend Myself
“So it goes.”
I love Kurt Vonnegut, his classic Slaughter House V should be required reading for every Presidential candidate and college freshman English class’s throughout the country. Mr. Vonnegut’s belief in humanism is a refreshing take on a world that is inching closer and closer towards a belief in an economically and socially profitable nuclear war, as if any war is anything more than killing with a nifty label. We need more Kurt’s in the world right now.
As much as I would like to lead a life that Kurt Vonnegut would be proud of, I have not. I can be a better friend, colleague, advocate for the sick, advocate for gender equality, advocate for the wonders of life, advocate for the environment, and advocate for humanism. I’ve treated people bad for the simple taste of revenge, I’ve walked away from good people for simply being annoyed in a moment, and most recently, I’ve let a situation with fellow advocates turn into a potentially dangerous and costly situation. So, for the rest of this post, “so it goes” will be referring to the profound regret I have regarding these last few years.
“So it goes”
A quick story of the history of my life for roughly these last 8 years. Around 2010, I became clinically depressed from a combination of pain from my rock climbing fall and then undiagnosed rheumatoid arthritis and PTSD from said fall. My pain and mental state kept getting worse despite an increase in the number of doctors I was seeing on a regular basis at that time. So based on the success of my friend Theresa’s blog, theunlost.com, I decided to enter the world of blogging and launched paintalks.com.
To say I had no idea as to what I was going to do with the site is probably an understatement! I was depressed, anxious, and unsatisfied with Friday night TV so I jumped on the computer and got started. My initial hope was that by writing about my medical and mental issues that I would become a better communicator, and if I became a better communicator I would be able to help my doctors find a plan of attack that would reduce may raising pain levels. In addition to becoming a better communicator, I wanted to try and establish a site where anyone in pain, regardless of age, gender, race, height, weight, mammal, checkbook, sexuality, etc, could come for a silly and obnoxious distraction from their pain. After all, pain didn’t care about these artificially created labels, why should I.
In an attempt to make a long story a little shorter, my website turned into the launch of my so called “advocacy” career. I went before the Idaho Legislature to testify before a joint Health and Welfare Committee on Arthritis Awareness. I wrote nonsense along with my life, I meant countless fellow arthritis and chronic pain patients online, and was invited to Stanford University’s Medicine X (Medx) Conference as a patient advocate. Never in my wildest dreams that fateful Friday night would I have ever guessed that I would end up at Stanford University sharing my story. Life is funny!
“So it goes.”
Medx 2015 was my 3rd trip to Stanford University’s premier medical conference. Initially, my application to return to the conference as an epatient was denied. However, shortly after the denial I was asked to become an epatient advisor for the conference, once again something else I would have never dreamt of happing even if I had 1,000 dreams. I was now in a leadership role for a conference that was challenging the antiqued idea of paternalistic medicine with a completely wild idea that everyone should be included. To put it another way, patients are experts too.
Leading into the 2015 Medx I falsely believed that I was friends with many in the arthritis and chronic pain world. In particular, I was misguided in my believe that I had a growing friendship with 2 fellow epatients, Kirsten and Kenzie. Kirsten is a Still’s patient and Kenzie is trying for all the autoimmune diagnoses.
As far as I can remember, I meet Kirsten through the very first rheumatoid arthritis patient that I ever meet online, Joanne. Joanne is now a close friend and mentor to me. When Joanne tells me to jump, I listen! So despite Kirsten and I’s very different backgrounds, I was initially looking forward to learning more about her as a person and her as a fellow chronic patient.
I meet Kenzie through #chroniclife leader and former Medx Executive Committee member X. X is widely considered one of the most valuable and experienced leaders in the #chroniclife and arthritis communities. It was thanks to X that I even knew about and had the courage to first apply to Medx in 2013. Kenzie most definitely had X seal of approval which I took as someone I should get to know and respect quickly.
“So it goes”.
For those of you that don’t know, Medx is an emotional, physical, and spiritual experience. As I was to discover after my first year, you will cry, work harder than you ever knew possible, fly home in 20,212 types of pain, and can’t waIt to fill out the next years application to do it all over again. Veterans of Medx call it Club Medx, the atmosphere feels like a nightclub. All of us epatient scholars are the center of everything and have the access and privilege to go anywhere and do anything at the conference. It is an rush comparable to anything I’v done skiing or on a mountain bike.
Being an epatient advisor is even more overwhelming than being at the conference as a rookie. Not only was I apart of the behind the scenes planning and execution of Medx, I had 5 epatients under my charge who I was responsible for their experience. These 5 fellow epatients were required to turn in their deliverables to me, I was their primary point of contact for questions and guidance, and I was their primary point of contact for medical emergencies.
As I recall, Kirsten was one of my charges but Kenzie was with a different epatient advisor. I had never meet Kenzie in person and was looking forward to meeting this legend in the arthritis world. Kirsten and I had meet in 2014 so Medx 2015 was her second trip to Stanford and thus did not require much in the way of guidance nor had many questions. She turned in her deliverables to me on time and no one came to me regarding any complaints or concerns regarding her participation. I happily reported this to the Medx Executive committee.
Personally, I thought my performance at Medx 2015 was my best yet. I had pushed myself to be more vulnerable, especially as one of the only handful or so males who were active in arthritis community at that time. My message on Twitter was reaching new people, it was more Alan than I even thought I was capable of, and 2 of my charges had presentations that shock Medx to its core. In what is a rare occasion for me, I actually took a few moments on that Sunday night after the conference to be proud of myself.
Don’t get me wrong, I had definitely left pieces of me at Stanford after my first 2 conferences. 2015 was the first time I left my entire heart and soul at the conference and was at the time, profoundly rewarded for my effort. I was so exhausted and in so much pain on that flight home that year but I did not care one bit. That moment in time had made me a better person, or so I thought.
For the next several months, there were rumors floating around that some epatients had filed a complaint against me. I never knew the specifics or who until September 2016. Y, another Medx Executive Board member, would periodically have Twitter conversations with me about how scary it is for woman online right now. She would send me examples she had received regarding horrible and disgusting sexism and Trump type misogyny. As I recall, at no time was this tied back to my actions at Medx 2015 nor was it expressed to me that she was sharing this as a leader of Medx, I just thought it was a friend helping a friend. Also, for my first couple of years at Medx Y and X had taken me under their wing it felt like because I single and clueless. I’m amazing at being every girls friend or big brother, I am completely pathetic when it comes to romance type relationships.
September 2016. 48 hours before I was supposed to get on a plane to head to Stanford for Medx 2016 I received a call from the executive director. This was the first time I was officially made aware of the allegations against me, that I had sexually harassed both Kenzie and Kirsten in 2015. At that moment I was given no opportunity to defend or explain myself, was given no specifics as to when/how I allegedly sexually harassed them, and was told me tenure as a epatient advisor was over and that I was not allowed to attend Medx 2016 unless I paid for everything. I was crushed!
“So it goes”.
This phone call would be the start of a PTSDs episode which would accelerate to a dark and dangerous place in February 2017. Mom’s birthday is in February. My Aunt Dianne, Mom’s older sister and best friend, died on Mom’s birthday. Kirsten, for reasons I don’t know, decided to go public and accuse me of sexually harassment on Twitter the same say my Aunt died. She used my full name and Twitter handle. At that point it had been a long time since I had spoken with her directly and almost as long since we had last communicated online. Her attack came out of no where as far as my opinion goes.
Shortly after Kirsten’s initial attack on Twitter, I began to receive nasty messages from women in the #chroniclife and #curearthritis communities who I had never meet nor talked to before. One woman, told me that Kirsten had created some kind of list and was passing it around, I have not seen this list as of yet. For the record, I had donated close to $1,000.00 to various fundraising campaigns with the #curearthritis organization, but was no receiving horrible messages from people wearing #curearthritis gear. My self esteem hit rock bottom and you are talking to a guy who threw up all over himself during middle school which led to the nickname Puke for several years afterwards.
Around April of 2016, after receiving help, I sent an apology message to X, Y, and Medx for the trouble I caused. At this point I knew any friendship between all of us was completely over but I was hoping we could at least be advocacy friends. Also, I was starting to realize the depths of my PTSD and wanted to apologize because I was definitely not at my best since I was asked to leave Medx.
Medx was the only one to respond back to me in a positive matter. They were happy I was still alive and understood why I had disappeared. Due to this positive response I inquired as to my status was with Medx. I was not sure as to what to expect because my future involvement with Medx was not discussed on that September 2016 call.
To my surprise, I was invited back to attend Medx 2017. I was beyond grateful for this opportunity. Unlike previous years, I kept this information private until September because I knew Kirsten would causes issues. At this point, I had no idea if Kenzie or Kirsten had applied or was going to attend Medx 2017, nor did I care one way or another.
Early in August of 2017 dad had multiple strokes. Dad was found laying in his driveway by a good Samaritan who called 911. The Boise Fire Department called me that day at work to say that dad was bloody, confused, and barely able to communicate. They were going to take him to St Al’s. Dad would spend the next 6 months angry, violent, without any short-term memory and with severely diminished capacity to communicate. He also started having hallucinations and long episodes of dementia. It was hell for him and for my brother and I. RIP Dad.
This time I would be attending Medx 2017 as a full-time caregiver in addition to being a chronic patient. I was so grateful for the opportunity that I soaked up every single conversation and moment as much as I could. After spending a year away, the lost of my Aunt on Mom’s birthday, the continued attacks online by Kirsten, my dad, in addition to my own health struggles, the trip to Stanford was the first time I had practiced self-care for any length of time for roughly a year. Huge thank you to my brother who was running dad’s life for the week I was gone!!!
After I got back from Medx, I found out Kirsten had struck again this time in the form of a Medium article. She had called out Stanford Medx for harboring me as an alleged “sexual predator”. This led to an official investigation lead by the Sexual Harassment Policy Office at Stanford. I received the official notification on a Friday night in the ER while they were trying to save dad after Emerson House tried to kill him with their neglect and incompetence.
As of today, I have not received any word as far as a conclusion goes. For the record, I DID NOT SEXUALLY HARASS OR TRY TO INTIMATE KIRSTEN OR KENZIE IN ANY FASHION OR FORM!!! That said, I am guilt of 2 things. First, I handled this entire situation poorly. I’m a better person than my temper and PTSD allowed me to be in that moment, for that I am sorry! Secondly, I am guilty as hell for assuming I had a growing friendship with Kenzie which I had obviously got profoundly wrong. I am truly sorry for making this assuming Kenzie!
“So it goes”.
Finally, I would like to apologize to Kirsten! Last week you posted something about receiving death threaty type comments and implied it was probably done with my blessing. Nothing could be further from the truth.
I HAVE ABSOLUTELY NO IDEA WHO DAVE IS AND I HAVE NEVER/NOR WOULD I EVER ASK ANYONE TO COMMENT ON YOUR CONTENT!!! NO ONE SHOULD EVER COMMENT ON KIRSTEN’S WORK ON MY BEHALF!!!! UNDER NO CIRCUMSTANCES DO I CONDONE DEATH THREATS!!!
You hate my guts Kirsten, I know that, you know that, and so does so many people online. We will never be friends and I have absolutely no respect for you as a advocate. That said, I don’t wish you harm or death. What Dave said is just wrong!!!
“So it goes”.
At one time I thought we all had something special online. We have all stood side by side at times when Trump like snake oil salesman disrespected us with their crap, fought so called comedians as they attacked fellow patients with their opioid induced constipation misunderstanding, helped each other through to many surgeries, and have given countless hours in interviews in the hopes of raising all of our quality of lives. I thought our group friendship was powerful and accomplishing great things. Hatred has killed this beyond repair. My only hope is that my idealistic notion of our group friendship is still strong amongst all of you because you all will raise the quality of life of your community!
So it goes…