Musashi Mix Inq

Pride 2016

Posted on June 16, 2016

pride 2016

“Love is the voice under all silences, the hope which has no opposite in fear;

the strength so strong mere force is feebleness:

the truth more first than sun, more last than star...”

— E. E. Cummings —

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Carriage

Posted on April 4, 2016

PAL 231

The last 5 months have been some of the toughest of my life. My partner and I decided in the past year that it was time to start trying to get pregnant. It’s a huge leap forward and has always been part of the plan for our lives.

Last November we had a miscarriage.

December 2015

December 2015

It was 4am the morning my partner shook me awake gleefully waving the stick in her hand. I’ve never been happier in my life than in that moment. Suddenly, everything was going to be alright.

But just a few weeks later at the first ultrasound, there was no heartbeat. The cold examination room was vacated by the tech and we cried harder than I ever knew was possible. Later came the D&C and we’ve been empty ever since.

Bone Machine

February 2016

This past week, I thought I’d try to make an art piece to capture the feelings that have been weighing me down so heavily. In times of my greatest struggles, I’ve always found it best to gain perspective and really process thru the creative process. Of course, I had no idea where to begin. And then the bottom of my stomach dropped out— I looked back and suddenly realized that I had already been making pieces about the miscarriage all along without knowing it. Most notably:

Bone Machine

The realization hit me hard enough that I struggled to tell my partner. How could this have happened? The most personal piece of art I’ve ever made burst forth completely subconsciously. I keep waiting for the creative catharsis to bring me back to life.

It’s not happening all at once. Clearly, I’ve been a strandbeest for far too long; the simulacra of life shambling onwards without intention. All that is needed is enough momentum and the illusion continues. These heartbreaking past few months– my partner and I have been silently fighting an uphill battle with emotional entropy.

We are not done trying to conceive and the emotional processing will continue. We've come a long way with the the support of our friends and family, but I felt that it was time to write about something that no one ever seems to talk about.

As I recently wrote, “It’s all an adventure…” and the hardest part is living it.

March 2016

March 2016

Thank you for being here.

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Where Do We Go From Here? REbirthday the 3rd

Posted on February 12, 2016

PAL 230

selfie 2016Hello, friends. It’s been a while 🙂 It’s hard to imagine, but I used to blog about chronic pain every week as a means of trying to figure this all out and share what I felt in a way I never had before. All those years bottled up and here I was just trying to find the language of myself. Spoons. Mana. Just keep swimming. However small these exercises seemed at the time, they laid the groundwork for the strength it took for action and ultimate victory. The past three years have been unlike anything before and I’m working hard on learning to find the adventure in it.

I never thought re-framing my perspective in and of itself would be my biggest struggle.

Before I could get better, I needed a story. Starting the blog in 2010, I created a fresh life-narrative to get flow. Flow gave me the momentum to stand. From there it was just one step above the last, gradually climbing up higher and higher. And then, after all the struggle to find the tools of stability, control, freedom, bravery, the right doctors and the right treatment - all in pursuit of this life experience everyone else seemed to be having - I abruptly reached the summit.

I didn’t even know I was on an adventure.

But enough about before. At a certain point in the last year or so, I realized that I was in an epilogue. Not that I didn’t deserve the respite, but I came to accept that it was time for something new. A journey initiated by me. Not some malady thrust upon me or a dire situation that I found myself in. Now that I triumphed and possessed some basic pieces, what did I want to do wth my life?

No pressure 😉

I started weekly counseling at the beginning of 2015. It took longer than I’d like to admit to get me there. Despite the initial reluctance, it has been overwhelmingly worth it. I never really considered that an ongoing, long, intentional conversation about yourself could actually change how you think and feel. With enough work, this can eventually change how you live.

One of the hardest things I’ve had to accept is that I’ve missed out on a lot, and that horrifyingly no one noticed. Fear of missing out in reverse. Not regret exactly, but learning that there was more going on than I could have ever actually experienced at the time. For example: having emotions is not only a privilege but generally everyone just walks around having them. Mind. Blown. How do you get thru a whole day while feeling… things? How do you even get anything done that way when everything around and inside of you is screaming in HD THX Technicolor madness? Nothing is mind dullingly simple anymore, for better or for worse.

So now when I challenge myself to do something basic yet more ambitious than I ever used to, I start by grabbing the simple tools I’d improvised over the years that worked so well for so long. I set the goal. I stare it down, but it just seems so impossibly far away. So I panic. I freeze. I feel guilty. I withdraw. I’ve given myself this gift of life, but how do I even?

Life is strange. Feeling is strange. When we read existentialism in high school, I basically went, “ Yeah, that sounds pretty accurate…” not realizing that most people weren’t literally stuck in an irrational yet totally tangible labyrinth of such depth and challenge- or that there was even a way out. That there was something more.

Now I try to embrace the challenge; remembering in these tough moments that “this is an adventure”. Trying is an adventure. Failure is an adventure.

Aside from the day to day challenges and some residual pain, how do you even know where to begin? I’m trying to break out of this prisoner’s mentality. I am free to choose and I’m trying not to get overwhelmed by that. Freedom one day at a time.

Somedays I wake up and feel like I’m falling. I’m trying to remember that a little plastic spaceman once taught me that, “flying is just falling with style”.

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P.S. I just picked up my guitar and started playing again after years of it sitting dormant in its case. With a little practice and some new callouses, I recorded a couple songs I wrote back when I was 17. It feels so good to play again 🙂

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Survivor: Re-Birthday the 2nd

Posted on February 12, 2015

[ Pal 229]

It’s now been two years since the original RFA procedure that changed my life forever. You can never really plan a whole life when living under severe chronic pain. Planing ten minutes ahead is hard enough. Two years out, I’m still getting to know myself for (what feels like) the first time. Now when I look in the mirror, I see more than just a pair of pained and screaming black-holes. I am steadily reemerging from 15 years of pain.

IMG_0002

Better is different from what I thought it’d be. The world is sharper and full of constant changes that I can now appreciate and run with. Each day isn’t merely based on a series of preset actions coordinated for dragging this body from morning thru to the night and crashing into the medicated state that I called "sleep". Now I can improvise. I don’t need to carry a pharmacy of pills, sharps and palliatives everywhere I go. I have more energy and drive than I ever dreamed I could. I can embrace adventure and feel the true serenity of every quite moment alone without the constant static feedback of pain. A real life waking dream.

Over the past two years I’ve had more accidental milestones than I could keep track of. I dropped almost all of my meds. I lost 70 pounds. I went to the store or a night on the town without pain pills and everything worked out just fine. I fought in my first judo tournament in years. Out of the medical haze, I am able to be much more present with my partner than ever before. Even the smallest of such victories have changed my entire world. And this is where it gets complicated —

Recently I have gotten used to seeing my much happier face in the mirror. But then there are times when, out of nowhere, there descends a dark side to this brilliantly sharper world. I lean in close to my reflection. I look at the scars and missing hair and then suddenly a voice in my head starts going, “Aren’t you all better now? Look at you. You’re a fucking mess. Your dream came true. You’re welcome. Now what? Are you having a pain day? Deal with it. Don’t take the meds. I never got a break. Neither should you…”

“Who the fuck is this?”, I ask.

“Hi. I’m the self-critical delinquent monster of inadequacy and doubt that has been waiting patiently to make you feel terrible about yourself now that you stopped being in constant physical pain. We have some catching up to do.”

"Whoa, dude. Chill the fuck out. Can't you see that I'm busy trying to be awesome. Keep it down."

And so on.

It took a while to recognize that I’ve been going thru a kind of second mental adolescence. I wasn’t emo in middle school. I was in actual pain and unable to share it with others. In some ways I matured very quickly as do most people who have major medical issues from an early age. Other parts of me have barely made themselves heard over the course of my life. I’m still working on processing these emotions and growing from the inside. The big sweeping highs and dark ragged lows of finding out who I am.

• • •

I have the best partner, family and friends in the world. Without them I wouldn’t have made it this far. I look at my reflection and see myself clearer than ever. Thru it all, there glows a brighter light in my eyes; the hunger for being alive. I’m a survivor. This is what surviving looks like.

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Palliativity 228: Return of the Legend

Posted on April 17, 2014

fight face

Aside from creating art, one of the biggest parts of my life has always been judo. I started at the age of 5 at Menomonee Club under the teaching of my great-uncle and world renowned sensei Henry "Hank" Okamura. Uncle Henry and his friends brought judo from the West Coast to Chicago via the Japanese American Internment during WWII. He recognized in me early on the potential of becoming a champion. I was indeed a very successful junior competitor, taking multiple national titles and fighting all over the country.

All of this success came to a halt in 1997 after my shoulder was dislocated in an international tournament at the age of 12. I wouldn't have the corrective surgery until a year later. It was after the rehab from this injury when my chronic neck pain began and would continue to get worse over time, remaining undiagnosed until late 2012. Throughout this period of my life, I continued to teach regularly and compete on and off despite the pain.

The video below from 2007 at age 23, experiencing constant severe neck pain and weighing in at 266 lbs, I participated in what I thought would be my final judo match ever:

Thankfully over the past year and a half, everything changed.

Last Saturday, seven years later, over 60 lbs lighter and pain free, I realized a dream I never thought possible:

After taking Silver at the Illinois State Championships, I can't wait til my next fight. It's good to be back.

silver

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Palliativity 227: can’t even cry

Posted on March 19, 2014

"broad spirit comes back along the way

comes to me red, black, with a lot to say

she sit my tail down, pull the wishbone wide

she ream my head out along the way"

Diane Cluck

true-detective

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