Once upon a time I was an incredibly proud and somewhat arrogant e-patient health activist. I wore that badge proudly! Thanks to meeting some truly powerful advocates in my disease community who became my heroes, friends, and mentors I was able to earn some impressive titles and have participated in amazing life changing opportunities many other advocates only dream about. Basically, my ego thought I was the shit. Then, almost as quickly as my rise to proud e-patient activist began, everything crashed around me. I’ve gone from being the king to feeling like crap; this is especially true for my mental health right now. So the first “I Am Me” point I would like to introduce to this 4 year anniversary of my blog is that I’m no health activist. Under no circumstance should one call me an e-patient. I am incredibly proud of my Ambassador status with curearthritis.org, I don’t want to hurt anymore and they are working towards that. So besides my Ambassador title I’m just a chronic patient who through a collection of eclectic professional experiences is no longer afraid to share my own patient story.
What is my patient story? The short answer is I don’t really know anymore, and by don’t really know I mean slowly losing the ability to care. Technically speaking, my “I Am Me” diagnoses includes severe osteoarthritis from falling off a cliff rocking climbing and like 5 car wrecks, inflammatory arthritis, gout, degenerative disk disease, depression, chronic pain, bulging disks, pinched nerves, facet joint arthritis, bilateral hip dysplasia, and liver disease. I’ve got a plate and 4 screws in my neck, my right hip is totally replaced, my left hip is resurfaced of which I had to travel to Utah to get because no one was performing that operation in Idaho at that time, both knees have been scoped, my left shoulder had to have a Bankart Repair to stabilize, my left arm needed 10 screws and a plate to repair after I fell rock climbing, I’ve been involved with clinical trials that included injecting synvisc into my hip instead of the traditional use of only in the knees, countless steroid and epidural injections, nerve burns, countless opiates, and I take a lose dose chemotherapy drug that glows in the dark called methotrexate. Boohoo right???
Now even I can understand why my unwillingness to accept an e-patient health activist title will probably be seen as disrespectful to the powerful advocates that have spent hours and hours helping me earn opportunities to which I say I’m still talking which is not nothing. This post and my willingness to continue to be vulnerable despite having taken up residence in the dark place is a tribute to the value I place on our friendship and mentorship. You all have earned and deserved the cool titles, not me.
“We must be careful about what we pretend to be.” Kurt Vonnegut Mother Night
Boring statistical number stuff indicates that my disease and autoimmune issues prefer woman over men by a large margin. “Arthur” likes the ladies, now on behalf of all males that try not to be sexist jerks (#NeverTrump) I would like to apologize for him. I would gladly take Arthur’s male card in a New York minute if it meant you could live in no pain ladies. However I can’t which is part of the reason I called my blog paintalks.com instead of something more related to arthritis and/or chronic pain. This leads me to my third “I Am Me” belief; I’ve never wanted to be a male health activist. Chronic pain, arthritis (aka Arthur), and autoimmune diseases might attack woman more but in the end none of these conditions care about gender so why should I? The more important characteristic of all these conditions is that it leaves fellow humans in ridiculous amounts of pain often for reasons the smart kids are still trying to figure out. My pain is no worse or more intense than someone else with inflammatory arthritis or osteoarthritis for example, it’s just my pain. However, to many in the e-patient health activist patient autonomy whatever movement want to separate us into silos or high school cliques based on gender. In fact, I’ve been told that some so called leaders in the arthritis community don’t like me simply because I’m male. Currently I’m too comfortable in the dark place now to continue to try to compete for scholarships, access, or platform space anymore with people like that. I will use what little energy I have left for life to create quality content that is usable and easily accessed by anyone who needs help, regardless of gender. P.S. I highly encourage anyone to take what they need from me, no credit necessary. Humans are supposed to help each other, not glorify the process for our own gains.
For a whole lot of reasons, none of which I’m going to share now, I’ve never really talked about or explored my mental health journey. Advocates, people, writers, or I don’t have to share every aspect of our lives in order to be authentic or helpful to the greater good I believe. In fact, this post might be the most I’ve ever mentioned my depression diagnosis. That said, my next “I Am Me” statement is that I don’t believe at all that I’ve had a bad life despite what the tone of this post might lead you to believe. Yes, I’m currently stuck in a bad few months but I’m confident this will eventually pass if I continue to work and try at life, they all can’t be winners right. I know I will continue to fail miserably at things like friendship, love, kindness, and mindfulness because I’m in a dark place right now. That’s life! Failure only is a bad thing if I go completely dark and disappear. My optimism comes from a strong belief in the fact that no one can predict the future which mean tomorrow is a new chance. Chance means hope in my book.
Ironically, I hate bumper sticker slogans like “chance means hope”. They cheapen the value of life I believe. So my fourth “I Am Me” declaration is going to be me bragging or listing my accomplishments, depending on your individual view of me as a person, while sick and broken. To begin with, I earned a second degree in Accounting in 3.5 years despite having 4 surgeries in 2 states. 6 weeks after my right total hip replacement surgery I skied because skiing brings me peace and I have a right to a high quality of life with my health issues. My professional job is full-time and involves me in high stress situations where millions of dollars of other people’s money is at stake. I’ve been invited to conferences at a big time college. National nonprofit organizations have sought me out because of the quality of my message. I’ve run political campaigns. In my spare time I’ve read everything from Buddhist teachings, to climbing Denali, to inspiring posts from cancer and cystic fibrosis patients. My life has taken me from conversations with world class designers and innovators to helping a close personal friend return to skiing after a massive and scary ass stroke (PS the bastard is once again out skiing me and it is so cool to watch). Somehow I’ve even been a caregiver to my dad who had his own stroke, triple bypass surgery, and still lives by himself. Despite what some kind and generous people might say, I am just me, just like you. I have no great strength, talent, or special skills outside of just being human. My arthritis and chronic pain is me, a part of me anyway whether I like it or not. There is no separate definition of life for me as a chronic patient vs a “healthy”, the beauty of life is its simplicity. There is just life, do work son!
My final “I Am Me” statement comes from my favorite author, Kurt Vonnegut. The beauty of “So It Goes” I believe is how simply and powerfully it sums up my life right now. Yes, I’m in a dark place. Yes, I have too many empty fingers for potential friends that I actually believe care about me and are not just using me because usually I’m a laid back, positive person. Yes, recent events have exacerbated my lifetime self-esteem issues regarding identifying true friends. So it goes. I still am going to work. I still am going to the gym in order to prepare for the upcoming ski and winter mountain climbing season; assuming I’m not having some painful medical procedure at the moment. I still am studying Buddhism when I can. So it goes.
As my blog turns 4 years old today, I’m hoping to return to the basics of life. Getting some made up e-patient activist advisor whatever title in the grand scheme of things is neat but essentially meaningless. Being an Ambassador is more than a title in my world, I’m getting to work towards a cure without all the cool kid drama. Once again, do work son! Changing one life through the use of sharing knowledge or life experience is meaningful. Being more mindful of today and not concentrating on yesterday is the foundation of life. Finally, making me smile more needs to be higher on the priority list. After all, all I can be is me.
P.S. Anyone want to go skiing or hike a mountain? I need more adventure, less work!!! 🤘🏻🤘🏻