"Watch and Learn" is a Thing

"Watch and Learn" is a thing; I'm a hypocrite if I could do that thing, but then don't.

If you have Ehlers-Danlos Syndrome and practice Goju Ryu karate, you'll need to practice adapting. I am a star at adapting, with plenty of life experience. What you do on the floor has to work in the street or it's of no use. Observing gives me an opportunity to watch and think about adaptations without trying to stay conscious and upright.   

For both Monday's and today's appointments I did not get medically cleared by my physiotherapists to attend the once-in-a-lifetime Gasshuku (special karate group training) this weekend. The Gasshuku is with 8th Dan Paul Enfield, and it was the right call: my sacrum won't unlock. If I try to use my lower back I'll be very sorry for it later on. Throwing punches without full access to my hips is causing my clavicles and shoulders to sublux. Kicking with a fibula that won't stay in place unless it's taped, or suri-ashi (body shifting) with an ankle that won't stay in place, is not a good idea. All this, right after finally figuring out a way to reduce the blacking out from Dysautonomia. Any one of those things would be reason enough for any rational human being to sit the heck down.

But this is Paul Enfield, the man who brought all four volumes of Higaonna-Sensei's work to document Goju Ryu karate to the English speaking world. Sensei told me to come and observe, and usually I would be able to do that, and happily. PT suggested the same. But I'm deaf in the dojo, so it would be complicated and stepping into the dojo is already so emotionally charged that I can't imagine being isolated in two ways (movement; hearing). That's an error of thinking, though; I am never separated even when I'm just observing because my dojo family goes out of its way to make sure everyone on the floor is included.

I dread sitting out because I put everything I have into physical therapy to get back to karate. It feels like I'll never be done rehabbing, and it's true that I'll never be done with rehab. PT is a permanent aspect of life with EDS. But rehab without karate feels like I'm fighting just to live, and my quality of life feels pretty low since the third bout of sepsis.  I also miss my port and the freedom to roam whenever and wherever I want to go.

It's hard on the psyche to go to the dojo and not physically participate. Sometimes I have to step out to cry, which is fine, but tends to make others worry. "It's just hard," I tell them. And it is. The pain of knowing my body will work against me if I try to use it is agonizing in itself. It's arguably worse than the physical pain, but because the physical pain affects my overall functional level (like being able to use the bathroom), I have to respect the pecking order of matter over mind. 

It won't be forever. Sensei assured me that there will be plenty more Gasshukus. But my heart is in the dojo and I want to be doing karate. No matter how much I read or review while I'm physically rehabbing, it's no replacement for live practice. Not being able to practice also has a detrimental effect on how much I can learn through studying, too.

What I'm trying to say is that I'm upset when I don't need to be, and if I want to be a hypocrite I should stay home and not find ways to adapt what I'm seeing. And yet, I feel pretty rotten. But even when you feel rotten, you should go to karate.

Tiny Hero Takanao Mahiro, Shotokan Karateka

Tiny Hero Takanao Mahiro, Shotokan Karateka

Since I started karate this charming young lady has had me mesmerized. There are videos of her all over the Internet performing perfect kata and bunkai (forms and martial applications) from age four. She is about nine years old now.

Mahiro is a Japanese Shotokan champion, flawless and fearless on the mat. Off the mat she is your average kind, respectful, perfectly cultured Japanese girl, an excellent representation of her country of ambassador caliber. Indeed, she is already raising the profile of Shotokan karate around the world.

If I'm not mistaken she is also featured in a few videos with the world's beloved Usami Rika. The videos take me back to days where it was so cold in the house that my sister and I would wear our winter jackets inside to practice our dancing. My sister gave a lot of herself to me in those formative years, though she didn't even live in the house. Maybe one day we can perform a kata together! The best thing about the ubiquitous availability of karate is that my sister lives in Miami and I in Baltimore, but we can find mighty good trainers anywhere in the world to learn exactly the same thing.

After a Shiai (tournament) bout my opponent and fellow karateka whispered, "you're terrifying!" as we walked off the floor.  She later elaborated on how my entire disposition changes when I'm practicing karate: you're the nicest person in the world, always smiling and happy. Then you get on the floor and it's looking everything changes!" I told her I am fearless in a fight because it's part of my Italian culture, but I recognize Mahiro's transformation of disposition and now wonder what else it could be. 

My opponent won that match. She is a kohai (junior karateka) to me by just a belt or two, so if she was truly afraid, she didn't show it: she performed well and I am still very happy that she won. It means she really used her skills! I must point out that she has many achievements out of the dojo that are far beyond my ken. My karate level is just a reflection of when I started and my belt is just for holding my gi closed. She won the match because she works hard and practices regularly. Perhaps she is more fearless than she feels. I respect her very highly.

I attribute to my culture my disposition change in a fight to my culture because I grew up seeing some of the best and worst of Italian culture.  I've had to be fearless at a moment's notice. It worried me for a while because I never want to scare anybody. I don't like how it feels to be scared. Seeing this transformation in Mahiro puts my mind at ease. Whatever it is that makes the change, it's not bad. It's a response to bad, like a cat whose tail wags erratically to signal that its limits will not be pushed beyond a certain point. Maybe it's the face of a gargoyle to warn demons that they should stay away, even though the gargoyle is made of stone and will not move!  That is, it's a protective disposition to ensure safety, not a malicious one seeking to harm.

I recognize Mahiro's serious face in myself. I recognize her confidence. She knows her stuff, her Sensei taught her well. Her Sensei knows her abilities and won't put her talents in danger where she will fail. Her entire school is behind her. I recognize this in her, in me.

Thanks to those who train us. Thanks to those who have made curricula available across the world so we can all grow, work hard, and learn.

The Spiritual Part of Spirit Training

Spirit Training is where you train so hard that the only thing you have left to carry you out of the dojo is your spirit. We do it every six weeks and it's when Sensei really shines.

The greatest challenge for a strong person to remember is that they are strong even when they don't feel strong---or especially when they don't feel strong. Maybe today wasn't Sensei's best day. It was rainy, some of us weren't awake yet, and he is probably still coming down from jet lg after a recent trip.  Even so, we were all plenty drenched with sweat and satisfaction!

At times he lets us see that his feelings are susceptible to vulnerability like everyone else's. It is not necessary to know the details because the lesson is in how he takes care of those feelings. To see vulnerability in him while knowing his strength helps me remember that my own vulnerabilities don't hold a candle to my strength. Part of our dojokun is, "I will strive to have patience, kindness, gentleness, and self-control."  That's the hardest part when it comes to me dealing with my own health muss, so I really need the example.

When you're in this dojo it's just you. No frills, no fancy hairstyles, no hundred patches all over your gi, none of that. Everyone can see you and anyone can watch you. This makes it important to do one's best, because we all learn from each other, and we will pick up on either the best or the worst.  One of the burdens that Sensei and Senpai bear is that everyone is watching them at all times, and for different reasons. They are always modeling, whether they like it or not, and that's a lot of pressure.

To my horror, I was late when I thought I'd be early today! Having decided that I would go all out today, I jumped in and had a blast. The pain was under control, I just took breaks to let spasms relax, and I got through without having to run fluids during training.

At one point my thoughts began to get foggy, which is a fairly new symptom, as far as I'm aware (or willing to admit). I dealt with it by using the Scientific Method, which is easy enough to use for problem solving, good and rote! I listed symptoms, concerns, possible solutions, likely outcomes, then evaluated and selected what I thought might work best. This was my first time working through it on my own in the dojo, I always check with Sensei. I thought I'd try it on my own, and I did okay. My method was breaks and hydration.

At the end of Spirit Training today, Sensei did a Mat Chat, where we sit down and be tells us what he's been thinking about, what he's been working on, what he'd like us to work on. It's a special time for character development that comes just before those who tested and passed receive their belts.

Here are some things Sensei shared which stuck with me as meaningful and relevant to my training. (Note: The wording may be off a little bit, I lipread and he has a beard.)

"It's not about how good you are at karate. It's about how good karate is for you."

"Whatever you believe in, you need to follow it to its logical end and know beyond every doubt that it will sustain you. If it doesn't, it's false."

"You cannot look at a person's belt and judge that their karate isn't good enough. You don't know what another person went through to get that belt."

I'll leave it at that, so you can think about it yourself.  I'm going to go home and shower, I stink. :)

Be well.

Now This One

Now and then, Sensei will give an unbelievable number of reps to do of some one drill. It's better for my mind than my body, though both benefit. "You don't count, or you'll be tired in a minute," he says. "I'll tell you when to stop. You just think about the one you're doing. You just think, 'now this one, now this one, now this one, now this one....'"

At the same time, I need to be aware of my energy level, the count of dislocations on each joint so I know what exercises to skip, my hydration level, puke risk, cervical spine stability, and a few other things. These details make it hard to focus on anything at all, let alone just one at a time.

This is my first day out of bed after...9ish (?) days of being so sick that all I could do was sleep. I lost count after three days, it was impossible to know. Somewhere late in the mix I managed to pull off a full exercise circuit of Juunbi Undo (Karate warm-up), physiotherapy, extra isometrics, and a little Arnis practice. If I was able to do that after having been asleep for that long, it means physiotherapy is working!

I was thrilled to discover what my very weak and exhausted body could still do! One might say it was just warming up  and gentle PT, but that's a tremendous accomplishment for an EDSer. After being in bed that long, it's nearly impossible to hold one's own head up because it has simply become too unstable from muscle hypotonia. The intracranial pressure was so incredible I thought about going in for emergency decompression. But I don't have full Chiari-I Malformation yet, so I don't want to do anything that could shift my cerebellum. I'm getting better now, it doesn't hurt to think about light anymore. 

Not unexpectedly, I did end up needing my neck brace for the remainder of the day and heavy-hitting pain meds, but today was more or less a "normal" EDS excruciating pain day! My back and hips hurt so badly that it's still hard to breathe, which is tiring, but I still managed to get in a total of twenty minutes of exercise and karate practice. It took me all day but I didn't give up. I just quit when I knew I wouldn't be able to walk, ha! No problem, fair enough. 

I'm beside myself with excitement about this. It means my endurance, tolerance, and my resistance to pain, are all improving. It also means that I'm getting better at pacing myself and maximizing what's working well, while protecting what is not. These are all things I've been working hard to get better at handling. I'm coming toward the end of my second round of intensive physiotherapy and occupational therapy at home, trying to increase my daily function, which is a whole other beast.

Trying to function in the dojo for an hour or two is one thing. It's got a set beginning and end time, everything is padded, there's water, barf meds and IV fluids within reach, I'm supervised, and have no responsibilities except to be safe and have fun.  It is impossible for me to keep up with life's demands on my own, but I don't qualify to get any help because I refuse to stop working, as that would drop me to a guaranteed life miles below the poverty level. I grew up below the poverty level, so I know what it's like to live on other people's garbage, have to steal from the food bank, and wear dead people's clothes. Not cool. Very possible in the gluttony of America, but, no thank you.

So I just make do, and try to run a tight ship on my schedule. Medical demands drive the boat. Then professional, personal, interpersonal, and then desires. I seldom get to the last one, which I'd like to change, because having desires is really a part of personal needs. If we learn not to aim for anything, we have no reason to keep moving. There's not much use for a ship that's just floating on the water. So I'm interested in setting some goals this year, which has me afraid.

Goals have seldom gone well for me. Sometimes my only goal is to keep up with my bowel and bladder schedule by keeping my guts moving my delicious cooking in the right direction so I can get through a work day. College took a decade. Getting my wheelchair took three years. After seven years of fighting for the right to marry, my ex-wife cheated and left.  After 25 years of unilateral deafness I wonder if my brain will ever learn to adapt to Cognitive Auditory Processing Disorder, so I can make sense of the extra noise that hearing reconstruction surgery has given me; five years into it, no dice. These enormous delays are consistent with my childhood, where I seldom even knew where I would be living the next day. I had moved 19 times by the time I was 18 years old. Nothing was consistent, I never finished a solid educational track, never got satisfying grades, never knew when I'd see my family or friends again, and all sorts of other problems. Med school didn't work out thanks to tumors and the onset of dysautonomia.

In short, I've learned through conditioning not to want things. But I've also learned that if I truly want something, I will have to give up an unusually large amount of time and effort to get it, compared to other people, and that I cannot expect to keep it. That's not a belief I think everyone should believe as a truism, it's just the picture that my own walk of life happens to paint. Perhaps that's why, in karate, I'm astounded when I level up on a schedule relatively comparative to my fellow karateka. Karate is the first thing in my life that has ever been stable, consistent, supportive, healthy, and exciting, all in one amazing grace of a package. It's not that other people don't have to work hard, but for some reason I just never manage to keep up. My EDS diagnosis and the first few years of adaptations cleared up a lot of the despair as to why that was. Working with a counselor helped me clear up the rest, all that stuff about having grown up in a rough way with no coping or social skills.

Generous people say I'm awesome, but you can rest assured that it's because a LOT of people have helped me get through this life. It took a village, and if there hadn't been one, I wouldn't be here at all, let alone where I am. I did the work, but countless people helped. While I'm grateful and humbled, that does overshadow my sense of independence. Is why I'm such a stickler for community outreach--it saved my life.

Now it's my first year as a single adult,  and I have made the decision that life goes on. Great, bravo. But that's not a high enough bar. I've lived over a full decade longer than I had expected to survive, and against staggering odds. I've touched thousands of lives and maybe even helped save a couple of dozen. I'm a tough cookie and one cool motherfucker. But what am I working toward for myself?  Enough of this "you're a survivor" stuff. Well, that's great. You know what? Surviving sucks. 

Living would be nicer, from what I've heard. The future is so shaky that anxiety lops off 15% of my daily energy--too big a chunk. If I had ANY confidence that I could expect to reach a goal on relatively the same schedule as most people, and not lose the bounty, today I might not feel too exhausted to even start. But if I had just one goal, I would make a plan. I would design a set of strategies and hypotheses with the scientific method, and then just try them out: now this one, now this one, now this one....

This entire entry could be summarized simply: of course I'm brave, but I still get scared.

It's probably fine. I like the person I've become, and that is the most impressive thing--a gift as much as an achievement.

Be well.

Keeping On

Onegaishimasu. Please teach me.

Life continues just as it has never promised to wait or slow down. But I look for the beauty and I saw it at the dojo this evening.

I had to sit down so I didn't overdo it. That left an odd number of karateka, with one of the younger karateka left out of a paired up exercise. Sensei slipped on his gloves and paired up with her.

Sensei has a big job to do. He is the head teacher, the owner, the leader. He is also a father, a friend, a counselor, a spiritual leader, a moral compass, a cheerleader, and a genuine human being. What a tall order for one guy! No wonder he looks tired by 9:30pm when it's time to close up shop.  The whole day through he is watching like Peter Cottontail. Are the children safe? Are the adults being good role models? Are the exercises challenging enough? Are the exercises too challenging? Did the business meet the bottom line this month? Is the paperwork done? Is the restroom stocked? Does the timer have batteries? Is the floor sanitized? Is my attitude on straight?

It's truly no wonder he isn't sure how to answer the simple question, "How are you?"  Every day he works with students to help them face their fears and challenges. Nobody has a hill that he won't climb. It's amazing to see.

But this young lady who was the odd one out today happens to be a bit skittish. But I saw Sensei in a rare moment. He was simply playing, enjoying a spar with her, building her confidence. He was a lion playing with his cub.

How it makes me happy to have seen this. It reminded me that I need to have fun in life.  I enjoy karate but until I felt at least a little safe with my skills I took it far too seriously. Constant hypervigilance is part and parcel of life with EDS. But if he can take on all that he does and still play, then maybe I can, too.

Sensei ni arigatou gozaimashita. Thank you for the lesson, Sensei.

500 Imperfect Kicks

"Who here is a perfectionist?" asked Sensei, who then explained that we need to focus on only our practice when we are on the dojo--not our children, work, or whatever else is going on outside of the dojo. He then reminded us not to drive ourselves crazy trying to get every detail perfect, but rather, to have some fun and stay relaxed.

The very next drill we did was 50 mawashi geri, roundhouse kicks, with each leg. Roundhouse kicks are the most difficult thing for me to do.

The first step of the kick is to pivot on the ball of the foot I'll be standing on, but because my skin is barely attached to me I'm not actually able to do that. My skin does not come off the floor with my feet and body, resulting in a very painful pull.  I either have to hop or step first, which gives an opponent advance notice of my next move, saps a goodly bit of energy, and changes my center of gravity away from what it needs to be for the kick.

Next, I aim. The kicking hip comes up (and hopefully stays connected), followed by the knee and then the swing of the foot. At this point the ankle I'm standing on usually subluxates, followed by the knee and/or hip. That is painful, but more frightening, because it can be so painful to land on a dislocated hip that I cry out in fear or pain, which breaks my heart.

If I complete the kick I have to find a way to land and right my body. This is the hardest part because, by this point, my standing leg is no longer where I planted it when I began the kick. Think fast: I have to figure out which bones are still under me and try to re-stack anything that didn't stay put. This looks and feels something like jumping down from the kick as though I were hopping down from a high shelf or counter. I never land gracefully and it almost always hurts! Tonight it didn't: I've been working very hard on my hip and balance.

Skip perfection, he says. I am terribly far from ever worrying about perfection, but that does nest me in the position to just have fun with it--and I do! That must make me lucky, because I kicked my heart out!

As I continued I discovered that my stamina has improved, and so has my temperature tolerance. My balance continues to be a struggle because I have weird proprioception (that's the word for the body's ability to know where it is and where its limbs are in space, and where it's going). I working on it.

Spectacular night.  Chillaxed, easy-going but firmly pushing through. My Sensei is very versatile, I think he could squeeze orange juice from granite if he needed to. He has a seemingly bottomless well of practices and ideas for how to help us all get a little stronger, a little more accurate, a little more graceful. I envy his toolbox of leadership. Moreover, I appreciate his warmth, humor, and the sweetness about him when he watches his students like a lion watches over his pride.

I write so highly of my Sensei that it seems almost sublimated or unrealistic. One would argue, and he certainly does, that he is just human. Of course we all make mistakes. But I have yet to bring a concern to his attention, no matter how small, that was not heard with love and compassion. What more is there? The truth is that he is an  experienced and educated teacher of karate and I am always caught off guard by how much more drawn to the art I become when he is teaching.  Therefore, I think it's okay to write of him as he appears to me.  We all have our faulty lives outside of the dojo but while we are there we are safe from those things, and we have the freedom to choose what is best about ourselves and flex those strengths for a little while. A man whose life work is dedicated to such improvements in people is a sterling treasure in this world.

At night I usually leave the dojo fired up and excited about going home to practice some more. Tonight I was satisfied with my work in class, comfortable with my body's progress, and finally peaceful enough in my head to let it rest. After a month of diligent physiotherapy to restore my hip it was nice to rest.

You may be wondering, if EDS is so bad and so dangerous as I say it is during karate, why do I practice martial arts? It's because those injuries happen anyway. The pain is a constant companion. A few times a week I get to let go of it and know that I can do more with my body than I have ever been able to do in the past. To discover one's strengths requires exploration. It's constant discovery in karate. Sometimes I don't like what I find, but usually I do. We did something like 500 kicks in class last night. I remember the three or four that went exactly the way I had wanted them to go. That's why I bother.

Be well.