Interestingly enough, my last post was written a few days before my last sanctioned meet and now, 18 months later, I find myself in the exact same state of affairs. I’m currently 3 days away from my first powerlifting meet since my brain surgery on September 20th, 2016 and the last thing I want to do right now is to continue this exorcism. It would be so much easier to simply pick up with an inspirational post after this meet, saying, “Hey, sorry I took so long dear readers, but things got rough there for a while, you understand.” The truth is though, you wouldn’t, and some of you need to. Some of you are like my brother, refusing or unable to see that, to a person with a disease like this, it hurts us far worse to be reminded that our affliction hurts everyone around us than any dystonia, tremor, or fall. Some of us on the other hand, need to see that it’s not just us waking up every morning and wondering why we’re still here. You aren’t the only one to be buried by guilt in knowing that you should still be able to work, to support your family,… but you can’t. That guilt is what buried me for months. I remember thinking that it would never leave. There are no platitudes or pretty phrases that I can tell you to make that feeling vanish. There is no river, there is no fire, and there damned sure is no river of fire inside all of us that holds our superpowers. I can recite Invictus by memory (impressive for a Parky) and it would never get through to the jaded mindset of the eminent victim. Fix this in your mind now, whether you are a caregiver or a care-needer, a PwP or a harshly judging brother, that everything is cyclical. Remember when your eyes crawl open after two hours sleep, when you can’t swallow because that part of your nervous system is currently incommunicado, that this is a valley. Keep your boots on and your eyes up, one foot in front of the other, and the light will find you. Enjoy the sunny heights so much that their memory is enough to shine through that jaded apathy that you know will come again. In the words of Charles Bukowski, “We are here to laugh at the odds and live our lives so well that death will tremble to take us.”, … OK, fine, I happen to like wordplay and platitudes…and on that note…
Caffeine & Kilos Deadlift Event, September 2016: I feel a bit of satisfaction after the failure in July. I finally have a 600 lb. deadlift in official competition. Even better, finishing second in my weight class to Silent Mike, who I just watched pull his first 700, stokes those dying embers in my forge. I realize, even though I’m the oldest competitor there by ten years, not to mention the only Parky, that I’m actually very close to that number and decide to push hard for it in the three weeks before Deep Brain Stimulation and the uncertainty (athletically at least) to follow.
Ironborn Strength Gym, September 2016: Last deadlift session before surgery. Ten minutes ago I finally pulled 655 for a PR and everyone is getting ready to leave. Beer bottles are in the trash, (yeah, we’re that kind of gym), but the plates are still on the bar. Junior looks at me and asks if I have another. “Let’s go seven plates.” As far as I know, 666 is still the world record in my division of the IPL (age 40-44, 220 lbs). Seven plates on each side of the Texas Deadlift Bar is 675. I’ve been in a groove all day, and it continues when I push the world away and feel all 14 plates come up so fast that they start to oscillate the bar as it bends up and down, like an Albatross flapping it’s wings on take off. Even though it would never count in competition, I know with a few weeks work, I could do this and make it official. As the bar settles down and I look to my left at Junior Magana, “Is it good?” I ask with just a look. “It’s good! It’s fucking good.” I slam the bar and do something very dumb. All day long, my little plastic action figure has ridden every single lift taped to the weights. I swing my left foot like a sand wedge, intending to launch the poor thing across the gym, but this is Kratos, magnate of the God of War video game franchise, and regardless of his eery likeness to my appearance, he will not be launched. My foot swings inches too low and kicks the weight hard enough to rock all 675 lbs. Miraculously, it wouldn’t hurt for two days, but then…yeah. The lesson here, dear reader is that we really can do almost anything we put our mind to, but we must contain the celebration!
San Francisco, September 20, 2016, 5:00 am: I feel completely peaceful as I walk the three blocks from our hotel room to get my mom’s car. I think the hospital might be closer to the hotel than our parking lot is. It’s misty and pleasantly chilly, every light on the street stretched out into a halo as if they’re in a Thomas Kinkade painting. Still no fear or anxiety, just peace and calm determination. I know this will be fine, but damn, I would kill or maim for a cup of French Roast on a morning like that.
—UCSF Med Center, 6:00 am:In pre-op. Still joking around with the staff as they screw the metal frame onto my face. The local anesthetic was the only pain I would feel in the entire procedure. My only concern is my mom, who will be staying in the hotel around the corner alone, my brother, still angry about the fight weeks before, will have nothing to do with me. She pokes her head around the curtain and her cheery smile melts and tears well up as she sees the metal mask bolted to her “baby’s” smiling face. She can’t stay and has to go to the waiting area for what must be one of the longest days of her life, alone. The anesthesiologist comes in and…
—The Operating Room, an eye-blink later: I blink my eyes and I know right away that the surgery has started. The blankets are warm and feel fantastic but my neck is already stiff from my head being bolted into the CT machine. The target for my DBS procedure is the subthalamic nucleus, or STN, a pea size structure deep in the base of the brain. A voice from behind me asks “Josh, how are you doing? It’s Dr. Starr.” I’d planned a horrible practical joke, but thankfully I settled for mere joviality, “So doc, are you guys in my brain right now?” “Yes, sir.”… “Cool.” After hours of testing, moving my right arm and leg in different patterns, touching a series of dots on an ipad, all while listening for the signal that they had exactly located the STN, I blinked my eyes…and I was in the recovery room, talking to the recovery nurse. Mom was there, covering her stress like the 42 year veteran parent that she is. An oddly dull headache is the only discomfort. Even the Zippo lighter-sized neurostimulators installed in my upper chest don’t hurt, and for only the second time in my life, out of far too many, I’m not nauseous coming out of surgery. These guys are good!….
—My bed is comfortable, but the angle keeps making me slide down into a slouch. I carefully plant my hands on the mattress and push myself up <STOP!!!> My head gurgles audibly as pressure in my skull builds then falls. MY response, <Keanu Reeves voice> “Whoah, awesome”. Over the next two days, I eat like a horse, ordering two entrees at each meal and never having trouble finishing them. Mom is in and out and my ex-wife and step-daughter call. I recover quickly, and two days later, we drive home. I enjoy making faces at people on the freeway with my head bandaged. My mom, is not a fan of my tomfoolery or shenanigans, but she’s used to them by now.
A few weeks later the DBS would be turned on and while I didn’t have one of those clear black and white, tremor one second, perfectly still the next moments, it was a huge success. The 47 staples were removed from the 4 incisions in my scalp and the steri-strips were removed from the incisions in my chest. Rewiring the human brain is not a simple process and there were some adjustments needed, but at first I felt so good that I convinced my neurologist that I wanted to try going without meds and just rely on the DBS to manage my symptoms. The fact that my issues had been predominantly motor vs. non-motor symptoms made me a poster boy for the procedure, so we gave it a shot. For a couple of weeks, I was basically healed. I had forgotten what it felt like to have both hands under my control. No tremors and only a ghost of a limp from muscle memory. Of course this thing wouldn’t be the undefeated champeen of painintheassery if it was that easy….
Over the following weeks, months, and now once every year, I would make multiple trips back to San Francisco for the study I volunteered for. I agreed to let Dr Starr install a third electrode on top of my brain. This electrode simply reads the signal from my motor cortex, giving the research team a chance to isolate a signal produced when my STN has too much stimulation. The hope is that this can lead to a smarter neurostimulator that can turn itself down when that signal is detected. About six months ago, the opportunity came up to actually put my system in a closed loop, or self-adjusting configuration. While it was just a temporary test, it was a great success. According to the rep from Medtronics who was there that day, I was one of the first people in the world experience it, and that is one of the things I am the most proud of. I encourage anyone reading this because they are considering DBS surgery, first of all do it. The surgery has an incredibly high success rate, and recent studies show that it has a much better impact on symptoms the sooner it is performed. It also presents a huge opportunity to help the medical community advance the technology that is helping so many people reclaim their quality of life. This is a chance to truly make a lasting difference and as for myself, it gives me a sense of purpose to hitting the 1 in 10,000 shot to win this disease at my age.
Now if that was the end, I’d be back into powerlifting mode, trying to translate the beauty of a strength sport into an inspirational essay and how each lift is a metaphor for…luckily there’s a bit more to come. Part three will wrap this little odyssey up with my attempt to return to work, my darkest months, a cross country road trip, and the effect your family can have on you, for good and for ill. Until then, Live. Your. Life.