She’s tiny, but she just may be the strongest woman in the world.
Falk Wünsch – I Have To Tell Something
Beauty is difficult to define. That’s a concept that I’ve thought about for some time now, and when you live your life in a constant struggle to simply maintain who you are, finding beauty becomes one of the most important things you can do. It gives us both the strength to keep moving forward, and something to move towards.
For those of us who carry a burden like Parkinson’s, it’s often necessary to find it in dark places. We are like a lone knight, standing watch while staring into a far too rapid sunset. The light dives for the horizon while we try to protect what’s ours. A steady hand. A firm stride…our independence. On this lonely vigil, if all we see are the shadows and the night, then why do we stand?
Our armor is heavy. The drugs, the therapies… often painful and an affliction themselves. Why not cast it aside?…
Because we choose to see the beauty behind the shadow.
Since joining the Parkinson’s community three years ago, I have seen strength on a scale that exists in no gym you will ever find and beauty beyond my ability to describe.
Strength is defined in many ways. It’s what I am known for. It is both the ability to press the attack and to endure defeat. More than that, it is the ability to return to the field, day after day when the outcome is already known.
While I am humbled when people are motivated by it, my strength is nothing compared to the strength that fills the smiles you will find in any children’s hospital.
I am not special in my strength or determination (and I am most definitely not beautiful). I am one of many, a single soldier in an army full of heroes.
Strength is to fail while daring greatly.
Beauty is the grace to accept the helping hand with dignity intact.
Beauty is to stay and share your light and to carry your children and your fellow soldiers a little farther down the path.
Why stay?…Why struggle?
Because there is beauty here.
While we may fear the night that is falling on our watch, we should greet it with open arms and a smiling heart. You see, that day that we so desperately tried to hold on to? It had the light of one star. In the night, we are surrounded by them.
Strength is to choose life when life means pain.
Beauty is that light that survives through the cold void of space and time to reach us from impossible distance.
Where beauty and strength unite is in the eyes that choose to see that beauty, and smile despite the pain.
Going through some old posts with a new friend, I found a few from the start of this blog that remind me the course I’ve set myself. I’m proud to see that a tough year hasn’t caused me to drift. The winds have been fierce, but so far this aging battleship holds hard and true.
It’s 3:45a.m. and insomnia is back. I had it beat there for a few days but there’s no getting around bio-chemistry. You see, the main problem with Parkinson’s is that it causes a deficiency in the neuro-transmitter Dopamine which is responsible for communicating movement demands to the body. The medicine that I take does help the symptoms, but it’s just not very smart. It doesn’t make me hyper at all but it just floods the brain with neuro-transmitters which makes it very hard to even want to sleep at night. So I’m bummed because I need to sleep. It is vital for recovering from training. In fact, with the amount of sleep I’ve been missing my body’s Testosterone production is surely almost non-existent. This mystifies me as to how I’ve been able to keep making gains in my training in spite of this deficiency. Mind over matter? Maybe. I strongly…
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Epic Soul Factory – Sigma (extended version)
The Merriam-Webster dictionary defines the term odyssey as:
a long wandering or voyage usually marked by many changes of fortune
an intellectual or spiritual wandering or quest
Today and tomorrow I start two odysseys. One I talk about all the time, my all-consuming quest to claim a national powerlifting record for all of my fellow brothers and sisters living with Parkinson’s and any other neuro-muscular disorder. It’s an undertaking that will test me to the limits of my physical potential. The other is the beginning of a road that every PwP (Person with Parkinson’s) will walk at one time or another: The slow-burning fuse that is the seemingly miracle-like drug Sinamet (Carbidopa-Levodopa). This drug promises life altering levels of relief right from the beginning, with the caveat that it will not last forever and will, in fact, eventually replace those rays of light with more shadows to darken the path. The former will only be made possible by the latter and the two intertwined will represent a huge change in my life starting tomorrow.
As I write this, my body is coping with the side effects of it’s first two half-doses of Sinamet and my overly-sensitive system is handling them better than I expected, but I am reminded quickly of how powerful this drug is and what it represents. The implications were made clear picking it up from the pharmacist yesterday. I used to work with her a few years ago, and while we don’t know each other well, we’re more familiar than she is with the average customer. She couldn’t hide the fact that she was somewhat sad that I had reached this point in my treatment. She explained that beyond the initial nausea, I would feel remarkably better. So much better in fact, that she warned of the powerful psychological addiction to want to take more, especially when it starts to wear off.
In other words, I’m going to be given a window. While I don’t know exactly how big that window is, (the research I’ve done showing 5 – 10 years being the most likely) the one thing that I do know is that the window will close. Do not be saddened by this. I’m not. This doesn’t change a thing for me the way I look at it. I don’t have the time to waste on negative emotions like fear, sadness or anger. That’s not to say they’re not there, I just refuse to let them darken the only thing that I truly have and that is this moment.
In about an hour, those dark emotions will fuel me through my training. This training will be the first steps on my other odyssey, the pursuit of which is honestly nearing the limit of my physical potential. I estimate that I will need to push myself to a maximum deadlift of 675 – 700lbs to have a decent, if very small chance at grabbing that ring for all of us with PD. As it stands now, it has been pushed again to 666lbs by a man here in California. That means there is no interim goal of reclaiming the state record. They are one and the same. In addition to that, with the current record holder residing in California, there is the very real possibility that we could compete in the same meet, meaning I not only have to beat his record but his best lifts of that day as well.
The more the odds stack up against me, the greater the reward becomes. I’m not referring to my name being temporarily at the top of some list on a powerlifting website or getting 1,000 likes on the video I make to celebrate the event. The reward that I’m after is one that’s really worth a true odyssey. My reward is the thought that my actions might lift up a host of unfortunate people who might think that they are hopeless. I aim to be the smith that puts steel in their hands to arm them for their own fight.
In the end, I’m still thankful for this existence. There is a value to this life now that wasn’t there before. Past my time of being an athlete, raising a family, and earning my living, in the second half of my life, I’ve been given the opportunity to truly make an impact on other people that will last long after I’m gone . From that perspective, I would take this role willingly.
Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us. – Samuel Smiles
***WOW, i forgot to publish this back in November***
First, if you are new to this blog, you really want to read this post: CULMINATION – This is what you can do with Parkinson’s
I say, if you only read one post from this blog, let CULMINATION be the one. It is the whole story, from soup to nuts, as well as a big window into why I do this.
WEEK 13 (11/2-11/8) – Not much to report. Uneventful, light training and recovery leading up to the Sacramento Open. I set a PR in my squat, pretty sure I became the first person with PD to break a powerlifting record. I think I’ve covered that (with almost 3,000 words) elsewhere….
WEEK 14 (11/9-11/15)
- MONDAY – THURSDAY: Lived on cloud nine after completing a huge goal at the Sacramento Open. Made new friends and contacts in the sport. The amount of respect I received from so many people I have looked up to has been both humbling and life affirming. I finally know for a fact that I am on the right track as far as living with this disease. I am a powerlifter and excelling in that sport is the best way that I can showcase what you can do with Parkinson’s
- FRIDAY: ABSOLUTELY LIFE-CHANGING!!! Drove to San Francisco to meet with Dr. Maya Katz and Dr Nijee Luthra. After a very thorough intake, we talked about me and what I do for a long time. They were even enthusiastic about watching LIVE YOUR LIFE my latest and best video from the CULMINATION blog post. After seeing it, they want me to speak at an Early-Onset PD support group. BEST OF ALL: I have been under-medicated and it turns out that this level of struggle that I’ve prepared myself to endure is not necessary. Upping my conservative, entry-level medications to the maximum but if I don’t feel GREAT in 2 weeks, I need to call the office and we progress until I feel not just good, but GREAT. I honestly did not think that was something I could expect in my life again. They also share my feelings on taking advantage of Deep Brain Stimulation Surgery as early as necessary. Potentially in a couple of years when these medication levels start to lose their effectiveness.
- SUNDAY: I have wanted another Jeep ever since I had to trade my old ’42 Willy’s Flat Fender for a Honda <facepalm…I HAD to>. After the car trouble last Friday almost prevented me from making it to the meet that has changed my life, I had to start shopping. I promised myself that I was going to stick to my guns and get the Jeep that I wanted rather than the responsible truck or econo car this time. Honestly, the reason being, when I lose the ability to drive, it will be too late. Well the best week of my PD life ended with me responding to the first on-line ad I found on a 2005 Wrangler. The deal couldn’t have been easier, I walked in with a down payment and 2hrs later drove it home. By far the best part was having a chance to do what I do there. For her privacy, I won’t disclose the lot owner’s affliction, but in the course of conversation, it came up that I have PD. After she talked to me about her condition and how rough it’s been, she wanted to see this website and the video above. For once, I was able to actually see the difference that it made to someone who really needed a new outlook. A great life-affirming end to a monumentally great week.
WEEK 15 (11/16-11/22)
- MONDAY – TUESDAY: Symptoms have been escalating, frankly, but I know the new med levels will take a bit to have an effect. Unable to sleep Monday night, but I got 6 hours on Tuesday. This is the most important thing Dr. Katz wants me to work on.
- WEDNESDAY: PD gets revenge for the great week I had after drop-kicking it at the Sac Open. As soon as I woke up at 3:30, I knew it was a bad day. I had no idea how bad though. Fifteen minutes after getting to work, everything started to crash. My energy levels dropped. I could hardly move my right arm and leg. I even had trouble speaking without a stutter. After UPS insisted on driving me home, I fell asleep for another 6 hours. As horrifying as this was, I woke up to something amazing. Barbell Shrugged has shared my Instagram video of the record breaking deadlift to their 61,000 subscribers, allowing me to wake up to an outpouring of support from friends and a few people I’ve never met. I’m living a somewhat amazing life right now.
If you read only one of my posts let this be the one.
He stared at his face in the mirror. The convoy had just eggressed back, his black gloves caked in blood and dirt. It had all soaked completely through.