Saturday, December 6, 2014

Basics Training Before Warrior Week

Way too much pain. I traveled for the holidays and traveling always takes weeks to a month for recovery. It'll get better, but today I sat, watched, and took notes. I also wiped down the sweaty mirror, that's being as involved as possible.

Hand work:
-The quickest way from point A (start of punch) to point B (target) is a straight line. Don't open up, hook, or sway. Stay relaxed, stay loose.
-"Muff" to guard the chin, almost like petting the hand to knock it away
-Hands are loosely closed, clench right before making contact
-Bring back a jab along the same plane from which you threw it
-Control your hands.
-Keep the leading hand more forward, save a millisecond.
-Hook: just duck ("bob") if it's a hook to the head. Just to move over ("slip") will still get you hit.

Keep legs slightly open so you can move freely, keep upper body closed and ready to avoid a jab

-Keep your chin tucked

-Stand sideways to the wall with your leading foot against it. When you jab, your arm shouldn't hit the wall.

-Jab/Cross punches: jab, and on cross, pivot the foot a little bit to tighten the movement, using extension to gain power from the floor. "Squish the bug!" Stay big, don't let the opponent close in on you.

Tuesday, December 2, 2014

Do You Tape or Splint?

I try not to tape up or brace my body for class unless I absolutely need it. My primary goal is self-defense, so I want my body to work as one cohesive unit, as I may not be taped or braced in the event of an altercation. God forbid. My Sensei keeps a very close watch on me and I have enough sense to sit out of--or modify--things that would be too dangerous for me to do safely. I follow all safety instructions from my Sensei to the letter, make sure I understand the instructions,  and I trust my partners to do the same. Rotten eggs don't stay in the dojo for long, it's all good people.

Quite a few of the people in my dojo, maybe even the majority of them, have prior combat and martial art training. This makes them well prepared to control themselves, and to taper their aggression. That's actually a part of it, being able to use the minimum amount of force required to be effective. So, they get something out of working with me, too!

Every one of us is struggling with something, whether we have a disability or not. We gather in the dojo to overcome what we can, and to help one another along those journeys. In fact, our ability to be a good partner is a part of our assessment for whether or not we level up. If we are not a good partner, we don't progress. Part of our success relies on how well we can help the people we are working with. Isn't that cool? It's easily my favourite rule in my dojo!

When I first began I only worked with black belts because they had the best control of their own movements, which kept me the safest. It also gave me the privilege of befriending people who had been there for a long time, and who were much farther along in their journeys than I was. As I became stronger and better at what I was doing, it became easier to work safely with lower belts, as I got better at defending myself and lower belts tends to not strike very hard at all.

Every day is different, and every day is a fresh start. You just have to overcome and adapt, keep a level head and keep going. You will learn volumes about your body in your first three or so belts, and after that you will get into learning about the martial art itself.

Don't forget that an enormous incentive of joining the martial arts is connection with the community greater than you'll ever fully access. For example, my karate Federation, IOGKF, is worldwide. We all do exactly the same exercises, and if I walked into any dojo I could expect the same results. It's also awesome to think about the fact that many of those people already have a lot more knowledge in physiology and combat than I do, many of them are medically trained in case I do get injured, and I park my car right outside the front door so that I have access to every mobility aid and pain reliever I can jam into the vehicle!

You're going to do great. Take the plunge!

Wednesday, November 26, 2014

EDS Kata Development

I'm thinking about developing kata series for hypermobile and Dysautonomia people once I get to shodan level (black belt). I couldn't do any such thing before then, out of respect to the practice and to safety itself. But it would be interesting.

I believe you're not even authorized to be a Sensei until you achieve at least Yon-dan level, fourth degree black belt, in Goju Ryu. I could be wrong.

The purpose of the kata would be to do as much damage as possible with the upper body, while posturing the lower body such that it would have as few dislocations as possible, such that one could run away. Kicks may push more force through an opponent but the risk of dislocation and landing improperly is high.

One thing I treasure about the Goju Ryu style is that one of its tenets is to close in on the opponent. This significantly reduces dislocation risk. It works, too! When I don't close in properly I can guarantee myself a stupid mistake and two to four weeks of physiotherapy, followed by six months of reconditioning. It doesn't take much. But for what karate has given me, it's worth it. I walk better, fall better, carry bags better, so much is better. The pain is not better. But I'm stronger and smarter about handling the pain, more aware, and more focused.

Advanced kata could involve fighting from a chair, using splints as weapons, and with other mobility aids. We'll see.

Thursday, November 20, 2014

Couch to 5 Kata

I've been a blue belt for quite some time now, and I'm quite comfortable here.  This is the last belt in the first half of the belt series of Goju Ryu karate-do.  That means once I level up, things get real.  I know five kata sequences now: Gekisai Dai Ichi, Gekisai Dai Ni, Saifa, Sanchin, and Seiyunchin.  I know a lot of the bunkai (applications), I've got some randori (light sparring) under my belt, and a few blue ribbons from shiai (tournaments).  Most importantly, I've got a strong physical and emotional bond to my karate family.  They are an integral part of my existence, people for whom I pray and cry, cheer, and celebrate.  When they level up, I get so excited to have been a part of their progress that I feel proud of myself, too.  There are people who started well before me and well after me, leveling up around me.  When I finally do level up I know I will have truly earned it, and it won't just be for attendance.

Some people don't like using a belt system, but it helps me feel safe.  When higher belts know I'm just a lower kyu-belt, they will be more careful. When white belts know I'm above them, they may be braver, and worry less about my port or about the syringe of anti-emitic drugs sticking out from where I have it tucked into my bra strap, in a place that I can guard fairly well now.  Belt systems give us opportunities to celebrate the milestones, to cheer one another on, to urge ourselves to keep moving forward, to understand where we are in the curriculum, and so on.  I like it.

For a few days I've been stuck on the couch during what one of my best friends calls "Shark Week," a monthly uterine blood bath.  The progesterone during Shark Week is theoretically the culprit for the excessive laxity and pain, which one of my doctors suggested is nature's way of setting up my body to push out the baby I'll never have.  I dragged myself to the dojo, hearing my Sensei's voice in my head, "You need to be here."  I couldn't even change into my gi, I just got there and took myself to the bench.  You know what?  It was the right decision!

I'm working on learning the sequence of Seiyunchin kata.  From the bench I don't have a chance to practice like I'd like to, but Sensei always includes me.  He still answers my questions, still expects me to pay attention, and I like that very well.  Seated at the bench I can watch everybody's different shape move along the guidelines, see how it's done, see how it's not done.  Not having to perform means having the energy to really listen and think about what Sensei is saying.  It's not my preference, but the truth is that it gives me a chance to grapple with my hearing loss, and to let myself think of hearing as a positive thing for once in a while.

Today is Transgender Day of Remembrance.  I have often spoken of my gi as a comfort item, something gender-neutral, a garb in which my body can just be what it is, free from interpretation and judgement.   We simply accept one another in the dojo, and it's a safe place. I wish all trans people would take at least one self-defense course.  The legislative efforts we've made are great and all, but out on the street the fact is that people get away with hate crimes.  My thoughts are with Krista, who entered immortality several years ago now.  I never stop missing her.

It's a busy blog tonight, lots of thoughts are racing through my head.  Another thing I'm thinking about is Buffalo, my home.  They've got about seven feet of snow in the Southtowns, where I'm from.  I wish I could be there to help shovel, to play, make snowmen (yes, I want to build a snowman), make snow angels, igloos, knock icicles off buildings and trees, and then come in soaking wet and frozen solid and warm up with hot soup.  I want to knock the little clusters of ice from the tassels of my scarf and blow my nose until I stop sniffling from the thaw of mucus membranes.  I miss the giant ice pack that is Buffalo, where anything that hurts is just a snow bank away from relief.

But I'd miss my dojo if I left.  My heart is 100% in it, a part of my identity, perhaps the strongest part of my identity at this time in my life.  Hopefully forever.

Be well.

Wednesday, October 22, 2014

Who cares about anatomy?

I think everyone, especially everyone with a chronic illness, should read at least one Anatomy & Physiology book, even if they won't understand it all. It has really helped me put the pieces together and keep the terror at bay. I can get through a violent muscle spasm in my "shoulder" by knowing, "well of course it hurts, it's right over my brachial plexus!" I know it sounds intimidating but it makes a huge difference.

The spasms on my brachial plexus on either side have become officially chronic. Last night one was so severe that I had to leave the dojo. When I got home I showered, took a beefy muscle relaxer, and my night was over. I lay awake surfing funny animal photos on Pinterest, waiting for the pill to deaden the hellfire in my neck.

When I can't get to karate it's a horrible time. My emotions go into a tantrum and I feel so lonely for my karate family. I try hard to be patient, but I reel on the fact that karate is the one thing in which I have ever physically succeeded, and it's all I want to do.

Sometimes I catch myself thinking that, if I could just arm myself with enough knowledge, maybe I could beat Ehlers-Danlos Syndrome. At those times it couldn't be harder to accept that such a plan is completely unrealistic. Although, knowing more does help me cope better, in that it helps me to communicate exactly what I'm going through, helps me interpret what moves I need to make next, and helps me push myself to do the therapeutic work I need to perform after I exercise.

My health has been on a frightening decline since July. But I'm stubborn and I'm working hard on this life, piece by piece, poco a poco.

Friday, October 3, 2014

Gi-hon Waza

What do you see when you look in the mirror? What are you looking for?

I've been trying makeup. I don't look so sick when I wear makeup, it takes me back to maybe five years ago. But I also don't feel like I look as pretty when I wear makeup. I have the very rare quality of a healthy body self-image. I smile big in the mirror and say, "hey, handsome!" Or, "hey, beautiful!" -- and I mean it. It's nice to not see the sick for a little while sometimes, but seeing myself as I am is visual confirmation of how strong I am, too.

In the dojo I hate to have any such paint on my person. I love my gi because it is without form, without gender. It is just a white cover that makes me feel present and strong. In my gi, I am a part of something much larger than gender, politick, age, ability. None of that matters. It all gets in the way of who we are as people. So in my gi, I am among other spirits who are trying to learn about their bodies and strengths just as I am. We share moments like families do, not interested in the superficial, but in the ways events and efforts have an impact on us, and on those around us.

Beyond the dojo I wish I could wear my gi all the time. I wish I could live with the simplicity of self, just be, and do good things. I'm asking this question later in life than most people do, but, why do we doll ourselves up? How can I come to understand that when I dress in feminine clothing and wear makeup, and style my hair, people feel MORE comfortable, and not less? How can I come to accept that the less of my true self I put out there, the more likely I am to be able to connect with people?

In the dojo we care about safety. We don't worry about painted nails but we worry about long nails. We don't worry about long hair but we worry about hair in our faces. We care on a more fundamental level. It doesn't matter whether we know each other, we just enjoy our time together in our school and share the joy of trying hard. We care about anything that can get in the way of our ability to use our bodies effectively. We even turn away from the mirror to fix our gi, even if we have to fix the back of our gi! How we look when we turn around is what we go with. We accept ourselves and move on to more meaningful things. That's so comforting for me. Some of us are even concerned that we are too distracted and segregated by having coloured kyu-obi (belts which indicate our grade before black, at which point your stay black throughout every next level you achieve).

Today I give thanks that my dojo is a safe (key word: "safe") place to do this work.

Mokuso (meditation):
Breathing in, I smile to myself.
Breathing out, I smile to my dojo.

Be well.

Saturday, September 13, 2014

Things to Work On

Gekisai Dai Ni

1. Hand position: The wrist should always be ready to make a strike, even during a block or during a return to chamber.

2. Uraken uchi (modified): I can't fully extend for a proper Uraken uchi because my wrist dislocates like crazy. But if I don't do a complete extension on Uraken uchi, my subsequent Gedan Barai will be very small and weak. So if I modify Uraken uchi, I need to make sure that I still do a full Gedan Barai.

3. Wrist grab: Unless actually grabbing in bunkai the thumb needs to be tucked underneath, against the palm of the hand. Otherwise it's like giving the other person a gift to grab and break the thumbs.

4. Neko Ashi Dachi: Make sure the knees are properly turned a little bit inward to protect the groin and align the knees safely.

5. Tora Guchi: Work on making movements fluid and cooperative between the blocks. Hand posture should have a straight radial line, consistent with strikes and blocks. 

6. Yoi: hands need to remain tight. m
Mushimi movement is heavy-sticky, as through cold peanut butter. Fluid movement.

Today there were few students and Sensei gave a lot of great instruction. I got to work with a Senpai who knows physiology very well, so he was able to explain why we do certain things on a way that made sense to me.  Nice day.

Tuesday, September 2, 2014

What Keeps You From Trying a Martial Art?

I am convinced that Goju Ryu is for everybody.  I have seen videos of quadriplegics using it effectively in training.  It's up-close and personal, you're always in contact, so I believe a blind person would fare well with it.  I'm half-deaf myself, so I know that hearing loss is not always an obstacle, and certainly is not a deal breaker.  I've got one of the most ridiculous anomalies of a disability in the world with Ehlers-Danlos Syndrome, and that's not stopping me.  Autism.  Celiac Disease.  Cancer.  ADHD.  OCD.  Bipolar disorder.  Depression.  PTSD.  Poverty.  Pregnancy.

Name your challenge, there's a way the IOGKF world will make Goju Ryu work, to make you more confident of two things:
1. Your life is worth saving.
2. You can and will save your life, and make it the best it can be.  You've made it this far, haven't you?

I'm not saying everybody is fit to be a karateka.  Everyone has their niche, and for some people karate isn't their thing.  I respect that.  But for those who wish to be included, we will include you.

After a two-week hiatus tonight was my first night returning to the dojo.  I feel like I've regressed a year, and I've not even been practicing for two years yet!  I'll get it back, but it's clear that even two weeks of practicing just on my own has set me back.  It's good to know that, though, because it reminds me of how meaningful it is to get out and spend an evening among my dojo family.

When my wife left a little over a year ago I dove into karate.  I needed to save my life, and although the fight was with myself and my own doubts, I had to fight for it.  Sensei called me to the dojo religiously, made it known that he expected me to be there, and not to miss any sessions.  I dropped 50lbs last year, partly from being really sick, part from being too depressed to eat, and partly from being at the dojo for three or four nights a week.  It was the hardest year of my life, and I've had an atypical number of hard years in my life.  I needed karate.  Now I can't imagine life without it, and luckily, I won't have to.  It's not something you do, it's something you become.  Karateka is the word for someone who practices karate.  Karate is such a holistic, invasive, complete way of being a human on earth, that every decision is impacted by what kind of person I want to face the next time I'm looking at myself in the mirror in the dojo.

I've moved to a new place.  My friend gave me three old training weapons that her son no longer uses, and they are in my new living room.  I can't wait to use them!  But, I have decided to wait on two of them until I have at least achieved Shodan Ho rank in karate (first-degree black belt, given by the school, signifying that you are preparing to test for your IOGKF Shodan black belt).  I don't want to get distracted.  At the same time it is important to diversify one's training, so I will at least look up some techniques for rokushaku bo (six foot stick) fighting and conditioning.  But my focus needs to stay on karate.  My performance was terrible tonight compared to how it was two weeks ago, so I'm glad to be back, and I'm not leaving until I'm satisfied with what I achieve!

The only reason I was able to practice karate tonight is because of my friends.  They have helped me tremendously, beyond measure.  They packed and moved /all/ of my belongings in 85-degree heat while I slept on ice packs and ran IV fluids because my A/C broke the week before I moved out and it was nearly impossible to stay conscious.  I am so stupefied at how much I need other people to live my life as I do, but the truth is that I cannot live without the help of others.  Growing up in the isolated way that I did, I have no idea how I survived, and I will /never/ go back to isolating myself.  I will always be karateka, which means being part of a community.  I will help anyone become a part of that community who wishes to try.

My new apartment is modest but very spacious and very beautiful.  I'm happy with it, but as I set it up I realize that, because Karate is part of my heartbeat, I need to, at all costs, make a dojo space.  It doesn't have to be big, but it has to be deliberately dojo space.  Such will be good for healing my broken heart and moving forward.  It has already begun to heal, but as I have a choice in the matter, I prefer to take an active role in the process.

Bushido No Megumi Dojokun
Through discipline, strength and humility
I will strive to bring out the best in myself and others.
I will use common sense before self-defense
And never be abusive or offensive.
I will strive to have patience, kindness, gentleness, and self-control.

Be well.

Monday, September 1, 2014

Karate vs. Street Fighting

The difference between getting your butt kicked by a karateka and getting your butt kicked in the street is that the karateka will stick around and help you clean up the blood.

Friday, August 29, 2014

Ehlers-Danlos Karateka Philosophy

I *destroyed* my body running every day and that's how I got my Ehlers-Danlos Syndrome diagnosis. Six years of physiotherapy later, I'm just barely functioning enough to work and practice karate. I continue to push, but I am much more careful now. I limit my movements to one or two planes of motion at a time if I can, limit impact, and follow body mechanics religiously from the time I wake up to the time I turn back into a pumpkin at night.

I've been on hiatus from karate because I'm moving, and that has given certain body parts time to repair.

Karate has been amazing for chronic illness. Maybe it's radical to think this way, but I have decided that if my body is the Titanic and I'm going down with the ship, I may as well play in the band. My physiotherapist said, "While you have time, go live. Because when you're lying in that bed you'll want those memories." My attitude about things I have already lost (e.g., running) is that, when I could, I did.

So, I don't know if any of that is interesting, but there it is. Be well.

Thursday, August 28, 2014

Nakamura-Sensei: a leader, but a person

Nakamura-Sensei has taken a picture of a place I will likely never see in my lifetime, but which has an important place in my heart. This is Higaonna-Sensei's dojo in the morning. The modest figure in the mirror is Nakamura-Sensei's reflection. I'm grateful for this image, it is serenity.

I loved training with them and with all the IOGKF karateka.  Higaonna-Sensei said to me, "You are working hard, but it also looks like you are having fun. I like that!"

I would have the time of my life if I ever got to visit Higaonna-Sensei's dojo, or Japan at all. I have so many great Japanese friends and family that even though my Japanese language skills are very rusty I would enjoy myself and smile the entire time. I would host the Japanese tea ceremony and tell each guest why they were important to me. I might even put ice in the matcha, I hear the weather has been hot.

I'm not sure that Nakamura-Sensei realizes how he touches the hearts of so many people. I think of he really knew, it would be difficult for him to be as modest as he is! He is just a man at the end of the day, but to me he is a great man, having great generosity and compassion. He is exactly what Japan hopes for--someone who makes Japanese society seem perfectly groomed, flawlessly well mannered. And yet, as an Okinawan, I wonder if he identifies with Japanese traditions in that way, or if he just knows very well how to behave in society. Best of all, I consider him my friend.

Anyway, I can imagine enjoying very much a morning like this in Higaonna-Sensei's dojo. I would sit zazen first thing and recite Dojokun, then practice hojo undo. In my wildest dreams, I would practice here beside my own Sensei. 

Be well.

Thursday, August 14, 2014

Tough Call Out

Some people will not be able to relate to this. Good. I hope few people ever
go through pain like this.

Tonight I made a hard decision that all Ehlers-Danlos Syndrome athletes have to make. I skipped my physical activity (Karate) to get groceries. You can't do karate if you starve to death.

But in the middle of shopping my shoulder subluxed. The pain exploded throughout my upper torso and my rib cage feels as loose as a goose. I'm assuming that the rib laxity is because I normally use my back muscles very actively to stabilize, but with my traps and rhomboids out of the game I'm sunk.

My spine feels like it's stuck to the right and my ribs feel like they'll pop away from my sternum if I try to fill my lungs. It's been hours and ice didn't help. Now I'm just in pain control mode and praying I don't sneeze.

I wouldn't call it a hopeless feeling but I'm pretty upset. I hate this. I already called out of work. I do know that if this had happened at the dojo I would have cried. The pain is horrible. You know it's bad when I skip the science of healing and just go into pain control. I just don't have a lot of options right now. I can't even get a breath.

I've probably been overdoing it. That's probably the message here. Thank goodness this is happening on Thursday night so I don't miss too much work. I had to take leave for my divorce and then I'll need leave time to move next weekend, plus leave next week for car repairs.

This weekend is Spirit Training! You can bet your Shireido gi I'll be there. I may be immobile in minutes but I'm not missing it. I need karate to feel alive. It's the only thing that makes me feel alive right now so I need to be there.

My one good thing for today is going to be hard. The goal is not to kick myself while I'm down by wallowing on frustration about not being able to move today. Instead, I'm going to just think about good memories and let them carry me across this gap. You see, tomorrow is Spirit Training, and since my body is toast I really need to take care of my spirit. 

Thursday, July 10, 2014

Lessons Learning

Karate is where I make peace with my body. I learn to protect it, to discover it, and best of all, to use it.

I feel like I got hit by a truck. Thank God I can work from home. I have barely gotten splinted and meds started, though I woke up at 6:30. Breakfast is sitting next to me, cold. I'm determined to meet all my goals for work today, and to care for myself so well that I get through karate tonight. But man, it's a rough start. Maybe a break to blog will settle me down.

Perhaps sensitive to my enthusiasm, Sensei has begun to teach me Seiyunchin. A month ago he asked me not to study it because it was not my kata yet at my level. So I focused on Saifa and I'm glad to have him looking out for my progress. I enjoy Saifa a lot, it is my strongest kata! I just got excited.

Well, I got what I wished for, and now that I'm learning Seiyunchin I almost wish I could back up! I can't physically sit in shiko dachi for that long. Same with Sanchin dachi stance. Other parts of my life have taken up time and energy, so I haven't been practicing at home. Not good.

Here's what I need to work on (the way I see it):
-Get through or modify Sanchin kata without passing out, choking, or dislocating my shoulders and knees

-Keep Saifa kata strong, polish my performance

-Straighten out mae geri (front kick) for power and balance

-Condition my feet to withstand a pivot on the ball of my foot for mawashi geri (roundhouse kick). I have no idea how I'll do this because the problem is that my skin is not connected well and I can feel it tearing away from the fascia. Maybe a small hop?

-Continue doing lots of push-ups! Maybe I will be able to do them off of my knees someday if I can condition my hands to withstand the laxity in weight-bearing. I've been following the advice Higaonna-Sensei gave me, to exercise my hands 100 reps in everything I do to strengthen them.

-Don't give up. Even if I have to sit down, throw up, lie down, modify, whatever. Take care of my health needs, and follow my Sensei's instruction to get back to the mat as soon as possible.

Future goals:
-I'd like to learn breakfalls. I am a high fall risk and this would be a great skill. Practicing my stances and  has certainly reduced my falls and even dislocations. But I would still like to be strong in breakfalls.

-Rolling and tumbling. I've only done one somersault, and with a spotter, but I stayed conscious! If I could learn to tuck my head

I predict that if I know I can fall and tumble safely that I will worry less in daily life about blacking out. I already worry a little less because I have my port and karate has helped me get better conditioned to withstand the heat. Ambient temperature changes remain a very complex problem.

The hardest part about passing out is that my memory brings back the awful feelings I endured when I was sickest, before my port. Just before I got my port I was ready to stop treatment and give up on life. I was going into shock at every needle stick, the pain was unbearable, the drugs made me feel awful and I was either sedated or unconscious most of the time. I can't believe I survived that and I thank my lucky stars for everyone who dragged me through it.  The feelings that come up today are much the same, but the intensity of those feelings should be lessening and they aren't lessening. So it hits like a wave and my only option is to drag myself off the mat quietly and choke on the tears while trying not to throw up or fall over. I don't know if that sensation is an emotional remnant or if it's actually happening.

I suspect that it's still actually happening because there is no cure for it. But the fact that it reminds me of more severe times even after I've gotten the proper chemo in place means that the emotional component of dysautonomia is still kicking my butt, and needs care.

When you're sick and no one really knows what to do your mind becomes a bad neighbourhood, not a place to go on your own.  For the last year and a half I've been living like there's no tomorrow because for the prior three years I either wasn't sure there would be a tomorrow, or wouldn't want it if there was one. It took a lot of cognitive management to survive that and I was on overload from how much alone time I had with my thoughts.  Now I look forward to the next day.

Anyway, that's what I'm working on. Karate is where I work on it. Balance is a moving target.

Sunday, June 22, 2014

Hot Summer, Hard Lessons

I have had good luck staying conscious most of the time this summer. I only blackout a few times a day, and I can sometimes predict when it will happen so that I don't fall.

I blacked out right at warm-up on Saturday. Bummer! But I did everything I could do, gently, by adapting. I missed a solid forty minutes of instruction, during which time I performed other meaningful tasks to help my dojo. I had tried to lie down, start fluids and elevate my legs to restore my blood pressure, but with three different leg injuries and a cloudy head my mind and emotions were like a bad neighbourhood and I didn't want to spend time there by myself.

I'm not exactly sure what is wrong with my legs, these are pains with which I am not familiar, but they have lingered for a few weeks and several times my legs have dropped out from under me. Most of the time I'm fine, but those occasions really get to me. I'm sad about it because my ability to kick will be set back...again. I'll just get back to it when I can. It will be okay.

Summer is very hard. I'm able to withstand more heat than I could last year but not much more, and not without hypervigilance about hydration, sodium, potassium, and calcium levels. The Nausea is back too, and thank goodness for IV anti-emetics.

Next week is Warrior Week!  Hard training, a shiai (tournament), Spirit Training, grading (for others this time around), and a potluck.  I love this time! But I'll have to be very careful. I want to make it count and do my best, but I think I should be conservative about my participation because one more injury will make it so that I can't function. Right now I can still prepare meals but it is hard to shower and do laundry. I have to sleep a LOT.

When I'm in the dojo I want karateka to know I am as dedicated as they come! But when I'm unwell, and I stop to take care of myself, I still sometimes get this little hint of doubt: "do I really need to stop, or am I just bring lazy or unmotivated?" This doubt is not useful, and no one else in the dojo doubts me, so why would I doubt myself? Well, there are a few reasons. For one, when we are in pain or tired we can get discouraged easily. Two, I have been hugely doubted in the past. Three, karate is technically contraindicated for Ehlers-Danlos Syndrome, which I aim to change with a modified curriculum someday. My Sensei never doubts me. He just says to get back in as soon as I can. This keeps me motivated because I do want to be with my friends in the dojo, not on the side in a personal fight to stay conscious or alive. It's just so dramatic a problem, but I have to take it seriously. If I were not realistic and responsible about my body I would not belong in a dojo, because if I'm not careful I can really get hurt. Such is true of anybody. And on that plane, we are all equal.

Tuesday, June 3, 2014

Gasshuku - MCF 2014 Karateka Kodomo (Karate Kids)

In small group training I had the pleasure of working with a young lady from Oklahoma.  She's already tough as nails, she is going to be someone very important someday, I can see leadership and patience in her.  She is like a cherry blossom, and when she blooms she's going to be so green and so strong that she will give shade and beauty to the world around her for as long as she is in it.

By the recommendation of my wonderful partner, we moved toward the back of our small group and worked on Bunkai with two other young karateka, a brother and sister who love one another enough to even stick with one another when they have an opportunity to work with karateka from all over the hemisphere.  These siblings have a sweetness to them, a camaraderie where one will not move without bringing the other along.  They have a lot of love and a strong mother, so they will move up, and bring one another along for the adventure.  This is as it should be, and to have had a few moments practice with them fills me with satisfaction because I shall have been a part of that story.

My partner and I split up the siblings so we could help them improve their skills.  The younger one, a boy, was very gentle with me.  I asked him why, and he said, "I don't like to hit people.  I don't want to hurt anybody.  I would feel really bad if I hurt somebody."  It was a moment where I had to decide whether to roll with it, or to try to guide him.  This is someone else's child, with their own way of raising him.  They are trusting other karateka to be good senpai for their children.  So I said, "You know, that's a great attitude to have, that's exactly as it should be.  But when you're working with a partner, you're going to be careful, but you will be teaching your partner what it feels like to get hit, and to be brave, and to respond well, so that they will be able to protect themselves if they come upon someone who is not as friendly or as caring as you are."  I don't know if that made sense to him, but it seemed like the right thing to say. At dinner I got to sit with that family, and I should like to know them forever because they are fantastic people.

It was a genuine pleasure having the privilege of working with IOGKF kodomo. My goodness, what hope I have seen in the youth this weekend!

Gasshuku - MCF 2014 Part 3

Sure, I feel a lot of pain. But today I also feel power. For me karate is not about avoiding pain or injury, but is about the willingness to keep going despite them.

As the sun set on MCF 2014 my Facebook page lit up with the brilliant stars which will continue to shine long after the event. I have met so many new people whom I will surely come to cherish as fellow karateka. My Karate-Do family continues to grow.

Sunday, June 1, 2014

Gasshuku - MCF 2014 Part 2

When I met Nakamura-Sensei for the first time I had just begun karate a week prior. A year and a half later I have just had the privilege of training under his watch. I learn a lot because he speaks clearly and precisely.

I skipped juunbi undo and went swimming. I came in for small groups with Sensei Villa and stayed for the seminars. My Sensei worked with me! That was a treasure because he is too busy running a school to work with me at home. We have similar backgrounds which makes it easy to trust him and to stay focused. Time of my life. TIME. OF. MY. LIFE.

I have made an enormous count of new friends this weekend and I couldn't be happier for that. There is nothing more satisfying than hearing, "you've inspired me" spoken in tender humility, or "you motivate me!" hollered down the hallway while I'm laying on the floor with my feet up on my wheelchair, in a splay of IV supplies, trying to get my blood pressure back up.

At the dinner tonight I chatted with Higaonna-Sensei for a few minutes. He said he is very proud of me, keep training, don't worry about the injuries.  I had passed out earlier, he said it's okay. He's a very caring man and I have no doubts about the Japanese government's decision to canonize him as a national treasure.

Sensei Bob, who organized this entire event and still made time to brew beer for everyone, put together a fantastic video montage of what Nakamura-Sensei has done to become the man he is, giving us all time to reflect on his succession under Higaonna-Sensei. The presentation itself was energizing (and flashy!) and I was glad to see reverence for all he has gone through in training. It was an endearing video and I enjoyed it very much. I hope I'll get to see it again!

It's been fun and challenging to think in four languages. I haven't done a very good job. It's impossible to hear in a hotel. At some point I gave up on my hearing aid and just went deaf. That's another story.

I'm feeling good about myself for the impression I have left on others. It reflects warmly on my Sensei for having made the brave decision to accept me into his school. I want people to understand what a big deal it is that he has taken me on as a student but I have accepted that such is a very long story and I'll let my progress speak for itself.

I have more to write but it's time to pack up, access my port and get fluids running! Today is spirit training. The last day. ONEGAISHIMASU!

Be well.

Friday, May 30, 2014

Gasshuku - MCF 2014 USA Part 1

My hotel room looks like a MASH unit. A fancy one. Hello from the Grand Hyatt Tampa Bay, host of the Miyagi Chojun Festival 2014 for North America. Day two of four is complete and I'm a tired zebra.
For those reading who do not know, the reference to zebras refers to a medical adage taught to med students: "When you hear hoof beats, think horses, not zebras." The lesson is to think for the obvious diagnostic explanations first, and not the exotic. For people with Ehlers-Danlos Syndrome the argument we make is that "Zebras do exist," and for as exotic as our condition is, it must not be ignored or excluded from the diagnostic process.
I flew in to town a day early and had one of the best days of my life with my mother, who lives in the area. We had salads, long talks, swimming time and a wonderful dinner made by my stepfather. I truly enjoyed myself and slept very well.
Day One:
I got up at 5am, had a protein shake, coffee and fruit salad. Relaxed, stretched, read a little, played some video games. Mom and Stepdad dropped me off at the hotel.
Hotel Room Fiasco
The short version of the story is that they gave me the wrong room three different times. Not accessible, not overlooking the Bay as promised in the reservation, and a million other problems. This took from 11am to 4pm to sort out. The Gasshuku began at 1:30.
Gasshuku Day One:
Registration was a breeze. It was beautifully organized! Flawless. I appreciate a good start, it sets the tone for the entire weekend.
Oops! Nakamura-Sensei very sweetly informed me that I had accidentally shown up for black belt training at 3:30. Regular training began at 4:30. I parked myself quietly in the back. Higaonna-Sensei came up to me and said to use the time for strengthening. Strengthen, stretch, and flex one hundred times. He said that will make me stronger.  This was my first time speaking with Higaonna-Sensei. He is exactly as I imagined, and I understand why he chose Nakamura-Sensei as his successor. They are both full of love, discipline, respect. One hundred of anything, eh? Okay! I filled 100 water glades for people to drink. ;)
There's so much more but I'm exhausted. More to come. 

Saturday, May 24, 2014

Well Done, Overdone

It's a good thing I'm a touch typist because I can't keep my eyes open.  I'm lying on my couch, which is where I have been all afternoon.  I have never regretted getting up early on Saturdays for Saturday morning karate class.  But sometimes I work very hard and end up forfeiting the rest of my Saturday.

When I get too weak or sore to function a few initial feelings come up from a bowl of little insecurities, all of them irrational.  Am I being lazy?  How can I really be this tired?  How am I going to accomplish X and Y?  Am I really in pain from something I did in class or is this pain I would have had anyway?  All sorts of insecurities.  These feelings are legitimate, as they stem from a wide variety of athletics-related and life-related events.  However, they are not particularly useful thoughts.  They're just thoughts, so they come and go as they will, and I don't have to judge them, or do anything about them, other than let them drift by without internalizing them.

That's a lot easier to do when I'm not stuck on the couch.  I don't even know how I'd drag myself upstairs to bed right now, though I did a good job of heating up homemade soup to get hydration, salt and nutrition in.  I'm glad I can eat carrots, even if I have to boil them to death to chew them without dislocating my jaw or breaking a(nother) tooth on one.

The message I want to send is this: everything with EDS is done in terms of compensation.  If I do one activity I will forfeit another.  In this case it was a day, and probably both ankles for a while, as soon as I remember where my braces are.  Why would I go all-out in karate like this if I know it's going to have this outcome?  Because everything in my life has this outcome.  The challenge is to time it well, plan it out, and make it count!  Easier said than done, but it really is a simple model, which is often the best kind of model.

Thursday, May 22, 2014

Karate bloopers!

We practiced Saifa kata in small groups and gave one another feedback. During one turn I moved but my leg did not come with me, oops! I think I pulled a muscle trying to get it to move. I screamed so loudly that our startled everyone! My group kept asking, "are you okay!?" I said, "excellent!" and just kept going.

When it was time for feedback one of them said, "it was great, except for that one part--you don't 'KIAI' there."

Ha! Oh, folly.

Karate is the best thing, ever.

Thursday, May 15, 2014

Busted Hip

During warm-up I dislocated the left knee trying to contort the right hip back into place. It was embarrassing because I cried out. I must have blacked out for a moment because I felt a hand on my shoulder next. It was Sensei, seeing if I was okay. The last thing I want to do is worry anyone, especially Sensei. It is his dojo, after all.

But you know what? I just listened to my awesome physiotherapist and lay down to let the hip rest. It still hasn't gone back in yet. While I lay down I tried to breathe peacefully. I practiced the kata drill lying down using just my upper body, and I felt good! I was proud of myself for not having given up. When I could, I sat up and did the drills for jodan yoko uke and jodan uke. Then I stood on one leg and continued.

When it was time to spar I knew that wouldn't be an option, so I went and sat out. But I stayed so I could line up and bow out with the class, and that felt good.

It's really hard some days to deal with EDS emotionally. I felt sad and disappointed that I couldn't fix my hip. I still do, despite the fact that I'm as fierce as any lion. I'm fierce, but I have feelings.

I love karate. A busted hip is not going to stop me.

Sunday, May 4, 2014

This Ain't No Wimbledon

I've taken a week off from karate to get me life things in order but I miss my dojo family and my practices. I look forward to getting back into it. Sometimes it's good to switch gears for a while. It enriches the first activity.

It's been almost a decade since I last picked up a tennis racket, but I did this week, having found in my closet a beautifully strung and wrapped racket in my closet which my mother had given me. It's Breast Cancer Awareness pink and my stabilizing sneakers are called the Brooks Beast. I'm bringing this up because our shouldn't matter what you like to wear or how you are comfortable presenting. There are such greater things about who we are as people.

The night before, I had sustained an excruciating cuboid dislocation that I couldn't reduce. I iced and splinted it all night, then heated and reset the bones in the morning. I cannot believe that it worked, and with no residual pain.

When I got to the court I decided I was going to take my time and let the balls go instead of running after them more than a few steps. To my incredible surprise I still have fairly good control of the ball after all these years. My body was fine and I had a very active day the day after, too.

Having only four of them and muscle hypitonia to slaughter my racquet control, I go into the woods beyond the tennis fence fairly regularly to retrieve the balls. 

Because I'm not too steady on my feet even with stabilizers the walk is always quite painful. To save my steps I stop at the edge of the woods and visually locate all four balls. I draw an imaginary regression line among them and plot my course. This reduces the risk of falls in that it reduces my number of steps, time in the woods, and it keeps the pain as low as possible.

Maybe it's the cool weather, maybe it's all the hard work, but I feel good about this and I am thrilled with the strength and stability I've gained from karate.

I won't try biking anytime soon, or likely ever, but I'm happy to have tennis back. It's like I've started up a pulse that had flatlined.

I get distracted very easily. I'm glad to add tennis to a non-karate night but I want to remain committed to karate. What a great day to be alive, as I write this from the ground of the tennis court, the breeze running over my thighs as I stretch my quads.

This is gooood. :)

Be well.

Dem's sexay legs. They does good things.  

Thursday, April 24, 2014

Randori Dumplings

Today I said, I'm going to the dojo with the intention of connecting with my own body and telling myself is okay to feel it even if what I will feel is pain.

And I did!  I almost barfed a million times but I didn't, and that's impressive.  I know it worries my classmates when I stagger out doubled over, but they trust me when I say I'm okay.  I appreciate their concern.  I don't want to gross everyone out by saying, "Just trying not to vomit, I'm good so far!"  I thought three hours would be enough of a break between eating and working out but now that it's warmer out I'll have to rethink that.

Injury: We practiced randori tonight, which is slow-motion, continuous sparring.  We have to let the opponent finish a move if they are successfully carrying something out, and it's good for learning to take a hit.  My opponent is very good, my belt level.  We crashed our knees into one another and it caused enough pain to drop me to the floor!  Sensei asked if it was dislocated and it was not, but it had dislocated a half-dozen times during warm-up, so I was impressed that it was in place.  He said it'll hurt tomorrow, that I should ice it tonight, and I certainly will.  Yowza!

Make sure the gym bag is stocked with enough nausea meds and supplies!  Caramba!

Still, I was able to get up and continue sparring.  That meant a lot to me.  I'm getting stronger and stronger.  Part of that is a matter of learning my limits and working around them.

New skill: When we were sparring Sensei reminded me to keep my hands up and guard my face.  I've been working hard on that.  He also said he wants to see me perform more mae geri and less mawashi geri.  I lose my balance on mae geri, which surprises me.  I have something to practice now.  I'm learning to slow down and lower my kicks until my balance is better, then I raise them higher and it feels like I'm starting at zero.  I'm probably not starting at zero, though.

Ahh, karate keeps me sane.

Thursday, April 10, 2014

On Self-determination, Anxiety and Guilt

Working from bed sucks. I want my bed to be for reading and sleeping. I'm glad to have fought for the ability to work from home but I'm frustrated to be so limited in my own home.

It's one of those days where I've been awake for hours and haven't the energy to even brush my teeth. Just trying to stick to the schedule and pace myself. The pain is sky-high and the anxiety follows suit if I don't keep actively reminding myself that there will be better days.

Sensei called to ask how I'm doing and I am very grateful for the call, it was nice to hear the voice of another human being. On days like this when I had physiotherapy at home to look forward to I had a little help starting my day, and then I had the rehabilitation help to try to get my pain under control. It left me better able to function, which translates to being able to function at all. Now I don't have that and it's tough again. This can get depressing but I am trying hard to remember that I look forward to better days.

Tonight I have karate. Here is the thought process:
-How will I get there?
-I'll be up by then, but will I stay up?
-Can I go all out since I will be going right back to bed, or will my blood pressure destabilize?
-Should I use my crutches?
-Should I bring my blood pressure cuff?
-Will I be able to work the day after?
-Would I be able to work the day after anyway?

Karate is a part of my exercise regimen and a human right of self-determination. It keeps me healthy by giving me physical improvement and emotional connection with other people.

Someone asked, "what do you look forward to?" And the answer was karate. I've pined on this question for a month. That's the answer. It has become a need, part of my identity. A very positive part, curiously compatible with my disabilities.

I may not last in the class tonight but I am compelled to be there. It's a good thing, and no one need ever feel guilty about a best effort to take care of themselves.

Saturday, April 5, 2014

Put Down the Pace

I will look for some information on pacing myself. In the beginners' class this morning, something like 80 mae geri and mawashi geri is too many geri. My spine is toast and now I'm missing my own class.

Today's Sensei is doing a great job with conditioning. She explained that if you have to do a lot of one particular move it is important to keep your pace, but that you can lower your intensity for a few reps so that you can catch your breath, relieve your muscles and go back to full power. I find that this approach gives me a chance to work smaller muscle groups during the lighter times.

I'm having a tough morning. This will be my last anniversary before getting divorced. I had it in my head last night while I couldn't sleep that it was going to be nice to kick the hell out of nothing (i.e., the air) but because we were conditioning we got to use pads. It seems I kicked much harder than I should have because my whole spine is mad about it. This is so hard to deal with. I wonder when the nightmare will end, and that's useless, because it will never end. I promised my life to her and it takes two people to keep a promise, so that promise will not be kept. It will always be a room in hell and it isn't easy to get used to the heat. It's okay with me that I went a little hard on the kicks this morning but it will be nice if I can cultivate more self-awareness and self-control by this time next year.

It will help lessen both the physical and emotional pain if I make this a goal so I will aim for it. Shifting my attention will be a healthy way to redirect the energy. I don't know how I will take care of the pain in the meantime, so that will be a task of humility, being humble enough to ask loved ones for help and being string enough to turn the other cheek to  criticism.

Pardon my language but divorce is fucking brutal.  My dojo is really saving my buns right now.

Warrior Week March 2014

Warrior Week occurs every six weeks, and I love it!  That's when the curriculum rotation resets for our dojo and we solidify our new skills before heading back to the basics. This is a great way to keep ourselves on the simple fact that our basics are our foundation, very effective in and of themselves when properly performed and dutifully maintained.

Warrior Week is a rigorous but exciting time! I always look forward to it. We get a modified class schedule that shakes up my medical schedule and reminds me not to take it so seriously. There is a shiai (tournament), Spirit Training, and a potluck. As I write this it's unbelievable that I ever make it through! On top of all this great work I was also invited to grade this time around for my 6-kyu (blue) belt! Holy cow!

The entire week is a time to test my might. I have improved at every shiai. This time I took first in kata! I took second again in sparring!  Holy cow again!  I have never gotten a blue ribbon for anything athletic! I've done tennis, hockey, ice skating, swimming, volleyball.... Never have I been so wholly engaged to the point that I continually progress, succeed, and even compete! In fact, I have always (frickin' /always/) ended up with an injury so violent that it ended my time with that activity. Karate is so diverse and I am so much stronger that I know the worst is over and such a thing will not happen again.

I did end up earning my blue belt. It's weird, the first karateka with whom I worked has his blue belt and I was sure that this guy was in the stratosphere in terms of skill. I was perfectly satisfied to be able to work with someone with a blue belt, and never imagined myself reaching this point. Reality check: with EDS there are days when I can't walk. A blue belt in karate is truly incredible. Doing karate at all is incredible.

Congratulations to all who tested and competed! I give thanks to my Sensei for believing in me.

Monday, March 24, 2014

Keep It Together

I could not keep my bones in place tonight. Pain all over, there was nothing I could do to get the pain under control which made it hard to focus.

Poco a poco. Little by little. I can remember now that every day was like this when I first started. I did two minutes of work and took three minutes to rest. It was a very slow start but I didn't care. Now I care because I am so into karate that there's nothing else I want to do. Still, I have to recognize that I have limits just like anybody else does.

EDS suuuucks.

Saturday, March 22, 2014

Zebro Warrior Challenge: 7 days to go

I once read on a sign at the New Carrollton D.C. Metro station that one pound of weight lost equates to four pounds of relief on the knees.

Just one week away from the end of March and the end of my Zebro Warrior Challenge, I am thrilled to say I have met all of my goals and then some!

It was a fair bit of reconfiguration for the entire first month, so I learned that quarterly challenges are better for me than short-term "burns" of exercise programming.  I had to adapt to sick time (a lot more of it than I had expected), going easy on weaker days, maximizing stronger days without overdoing it, the logistics of always having a clean gi and getting groceries regularly.

Those last two are very, very hard. I still need to figure out how to either get laundry and groceries done independently or get help with them. It's just too hard. Likewise, it's nearly impossible for me to clean pots and pans without pain and dislocations. I've squared away a lot of issues with Activities of Daily Living (ADLs) but these ones are just not options. Neither is vacuuming my stairs or my sofa.

How does one explain the legitimate need for an in-home health aid while also advancing in karate? "Self-determination" is the term for a person's right to choose, where in my case I am choosing my method of exercise as karate. It's so strange to think that karate, an aggressive and highly active art, is the most successful physical thing I have ever done. I have danced tap, jazz, acro and ballet; worked on stage crews in school and professional theatres; played hockey; ice skated; swum; played on the tennis team; done the gym thing, and run. All of these ended with very sad stories. Karate may well end the same, but never before has my heart been so fulfilled, nor my body so improved.

To be fair, physiotherapy is a part of my daily life and I am highly educated now about anatomy and physiology. I also have adequate access to medical care and protective equipment. I have the spoils of a support network too large to count. These are contributors to my success, but what also deserves recognition here is my dojo. My Sensei keeps a very close eye on me and if I miss karate it had better be for good reason. He holds me accountable, and I have beber had anyone look after me quite like he does. Sometimes I think he can see farther into my future with karate than I can. Other times we are both just praying that God watches over us all while I try a new thing with the body I have been given. Nevertheless, every day that the dojo is open I want to be there. I want to be learning, working, contributing, and growing.

By the time I was 18 years old I had moved 19 times, as I grew up in a household unstable at best. I have always ached to move back to my hometown of Buffalo, New York, but now I have finally found a place that feels like a home to me, and it is at my dojo. Nowhere in the world do I feel safer, more challenged, more centered or more focused. And now that I know what these feelings are really like, I will be able to recognize them when I have achieved them outside of the dojo. These are healthy feelings to have, and I have cultivated them over the courses of good and bad times.

Since I started karate, and thanks to this challenge, I have lost 50lbs. My pants are five sizes smaller. Maybe it's a little unflattering still, but I discovered tonight that I now fit into size 'L' t-shirts. (It might be more flattering than a baggy shirt, how should I know? I have zero fashion sense.) 50lbs is about five cats, think about it. Imagine carrying five cats everywhere you go, but without the snuggling and cuteness.

A weird thing about weight loss: my family is never as proud of anything as they are when someone loses weight. It's directly tied to self-worth. When I was young I heard a man on PBS say, "if you haven't noticed, I'm fat; that doesn't make me ugly or stupid." I think that man saved my self-esteem. I have never let my weight get in the way of my sense of self-efficacy or self-worth.

Since I have lost this weight my body is starting to take on a curvaceous shape that makes me feel incredibly self-conscious. I identify as genderqueer, having no claim to either the male or female end of the gender binary. I'm having trouble sorting out my feelings about my body as itself and my body as something with which society interacts. The pressure is finally so overwhelming that I'm dropping the subject for a while and trying to focus exclusively on health, letting my body shape develop as it may. In short, I just want to keep focusing on karate and getting stronger. I don't want my gender identity or expression to get in the way of who I really am. Who I am at my basest is pretty rad. That's good enough.

The most satisfying and exciting finale for my Zebro Warrior Challenge is that I have been invited to test for my 6-kyu belt in Goju Ryu Karate on 29 March 2014. That's five belts away from black. Two days from the end of my Challenge will be Spirit Training (where you train so hard on a Saturday morning the the only thing you have left to carry you out of the dojo is your spirit), my test, and a dojo potluck. Then I will have two days to recover from that and finish strong, ready for the next adventure.

I owe a great deal of thanks to Sensei Mike of Defensive Arts Dojo where I got my start in martial arts. He helped me design the challenge, set goals, and stay motivated. It didn't take much to make me feel safe, grounded and ready for this hard work. Here in Maryland, Sensei Tony has given me as much access to time at the Warriors of Grace Karate dojo as I could find, allowing me to practice during the day when the dojo was empty, to review and solidify my basic skills in the beginners' classes, to observe the advanced classes, and everything in between.

Life with Ehlers-Danlos Syndrome and dysautonomia is brutal. There is zero question. It should not be doubted that it is not as bad as it has seemed or that it is not a very real and disabling condition just because I have made improvements against the odds. The climb is supremely steep, with doctors not knowing what to do or what to recommend, assorted medical teams working rigorously to rehabilitate me, merciless stacks of paperwork and research, a bank account running on fumes from the cost of care, judgmental social pressure, and more. I am just writing this blog to prove--probably to myself--that this life, with all its hell, is still worth it. Karate is a wonderful adventure.

Whenever I get to heaven it will have a room that is just like my dojo, and I will have a body that can practice forever, with angels just like my fellow karateka on earth. I love them.

When I started karate one of the Sensei said, "I think you'll find that you belong here." Mission accomplished. I have never belonged anywhere as I do here.

Monday, March 17, 2014

Zebro Warrior Challenge: Two Weeks To Go

To revisit, here are my Zebro Warrior Challenge goals:

  • Strength
    • Work up to and sustain physiotherapy, 3 reps of 8, 3x/wk, with 1lb. weights
  • Endurance
    • 5 of each kata I know, two at full speed and power, 2x/wk outside of karate class
  • Stamina
    • Identify 3 easy energy, low/easy vomit foods that can sustain me when I am too sick to prepare meals
    • Eat dinner every night before 7:30pm

I am holding strong and making progress physically.  I'm still tired but now it's because I'm doing more, since I have extra stamina.  For the last few months I've been in a medically intensive rehabilitation pilot program.  The results have been satisfying.  Now I can perform some activities of daily living (ADLs) more easily than before, and that's a good feeling.  It helps me separate from my soon-to-be ex-wife and the things she used to help with--also the things we used to fight about.

With physiotherapy I've gone far, but I haven't been working with 1lb. weights.  I decided it's too hard on my joints.  I still practice my kata, that's been great!  I feel more confident.  I've advanced to also practicing my bunkai, but that's more study than active practice.  Stamina has increased and I've actually gotten the vomit under control!  I eat small bits of food throughout the day and my guts seem to manage that better.  It's hard to eat dinner before 7:30pm but overall I am doing a good job with it.

Two weeks remain in this challenge and I'm very satisfied.  It feels good to have set and achieved some goals for myself.  To celebrate I bought myself a gym bag and a yoga mat.  I've been using a bag I bought 12 years ago that is too small, and working on the hard floor at home.  The new bag is my favourite shade of green and has a handle on the side which makes it much easier for me to carry and manipulate.  It was less than $20 so I went for it.  I'll have it for a long time.  Once I clean and sterilize my old bag as much as possible I'll use it to carry some extra medical supplies in my car during the temperate months, just for safety and convenience.

Some more good news, I got invited to grade at the end of this month!  This will be my 6-kyu grading, and I am feeling more confident about this test than I have about any other.  It is still humbling to get the invitation to grade, but I have worked extremely hard for the last three months in particular.

At the intermediate level fighting is starting to get more realistic.  I appreciate this but it's scary at the same time.  I'm not afraid of getting hit or hurt, I'm afraid of having a flashback to growing up with fairly regular violence.  Something tells me that if it hasn't happened yet it isn't going to happen, especially because I am aware of it and taking care of it.  But there's no good way to eat a s*** sandwich, and this is something I'm going to have to work through.

More than getting hurt, I worry about how a fellow karateka will feel if they accidentally hurt me.  My shoulder dislocated when a classmate executed a beautiful block (jodan age uke) and they are still sorry about it.  I want people to understand that I am practicing karate to learn self-defense just as they are, that the enemy on the street is not going to check and make sure I'm okay when they strike.  I know people are aware of this, but they are caring all the same.  Luckily they are starting to treat me like everyone else, which is giving me the opportunity to grow like everyone else.  We just deal with the injuries as they come along, and I think that's good.

I want to be as good as I can be, but I can only get as good as I can reach.  If I am not reaching far because of fear, then I will never learn my real limits, and never will I have the opportunity to break through those limits, whether real or perceived.

At this point I'm very happy with my progress.  The Zebro Warrior Challenge has been a great success for me and I look forward to producing another adventure for myself.

Monday, February 17, 2014

Once Per Calendar Year

Sensei smiled and gently said, "once a year, you're allowed!" I bought a dojo t-shirt because I was so excited about getting to go to the dojo that I forgot the top of my gi!

It was very embarrassing and hard on my body image. I've lost a lot of weight and my skin drapes off of me. When I punch, a sheet of skin flies forward very painfully and then wrinkles backward. The whole mess was very distracting and I felt awful. A dermatologist referred me to a plastic surgeon after saying, "I can't believe you really want this done, knowing how terribly your skin heals." So I had that going on my head all night. I hear it in my head every day, too. The pain is worse than the embarrassment. It's just so grotesque--it's not shame that I've lost weight and my skin is loose, it's just so gross looking to watch it slide around me, and watch it catch on equipment, that I hope I never, ever forget my gi again.

I hate EDS and today has been one of those days where it's very hard to resist that hate and anger. I spent the day resting my body so I could practice tonight. My roommate helped me get started and have me a lot of encouragement. I appreciated that. A lot.

The t-shirt was form-fitted and it finally occurred to me that I really have lost a lot of weight. My femaleness is showing through in my chest and I was extremely self-conscious, even though my chest doesn't stick out in my super tight sports bras. I got through that by accepting the following truths:

1. My dojo has accepted everything about my body from day one.
2. My dojo treats both genders equally.
3. My dojo acknowledges that we all have challenges.

Therefore, I will respect myself, too.

Sunday, February 16, 2014

Zebro Warrior Challenge: Update!

Finally, an update!

I got hurt and it's taken a long time to recover. I am doing my best in the dojo to keep up physically. At home I had to adjust. Now I just do physiotherapy at home and read about karate. But I am still working on eating well and that is actually improving a lot! I have already been eating carefully for a long time but now I can do it in a way that reduces reflux!

I'm just a single pound away from my weight goal, more than a month early! The question is, do I set another weight goal, or focus on something else? I haven't really done anything specific to work toward the current goal, it has just happened naturally because I have focused on good nutrition. The only reason I even noticed was that I happened to hop on the scale today. I usually don't. With EDS my weight can fluctuate by more than seven pounds in a day. I would drive myself crazy if I chose to worry about my weight.

In any case, it was a nice discovery.

Heaven Room

"Die when I may" (to use Lincoln's words), my heaven will have a room that looks just like this. To me, the sun shining in over the mats says that God watches over us.

Saturday, February 15, 2014

Geki Sai Dai Ichi - Renzoku Bunkai

Today's instructing Senpai got creative and asked karateka who practiced other martial arts to demonstrate a kata from that other practice. I got to see a Tae Kwon Do kata and a Shorin-Ryu karate kata, both for the first time!

If I heard the Shorin Ryu karateka properly, I learned that Shorin Ryu kata are designed to be performed within a small amount of space.  Self-defense work in a small space appeals to me because any movement made without full extension of a joint is a better move for someone with EDS.  The footwork was slow and controlled, while the upper body movements were abrupt, and seemed to rely on what could be done with the feet firmly planted.

The main skill we worked on was Geki Sai Dai Ichi Renzoku Bunkai, which looks like this:

It was a lot of fun to watch myself get better and faster at Renzoku Bunkai, which is the application of a kata performed in a straight line.  It feels like a dance of sorts, I enjoy it.

Technically speaking, Renzoku Bunkai helps me with regular Bunkai in that it helps me think successively about how each movement fits into the overall kata, as well as into direct application.  It bridges the gap between the two, and I think it was a brilliant design to add to the practice.

The dojo is my safe space and I go there no matter what.  We are always redirected to karate if we become distracted or upset.  This happened twice today to me.  Once, during Sanchin drills, I became very upset because Sanchin involves very powerful breathing techniques, and I got flooded with feelings for friends of mine and people I care about who do not have functioning airways.  I felt a whole lot of grief at once.  The second distraction was just that I had become tired, and lost track of what I was doing.  Out of nowhere I started getting upset about my new friend who is on her way to immortality as I write this.  I had to step out and check in with my Sensei, who pinched me and reminded me that, although I was sad for her, I was alive, and I should be living.  My Senpai, with whom I was working on drills, helped me by very directly saying, "Okay! And now we're focused again, aaaand go!"  Shockingly, it worked.

I particularly enjoy working with this Senpai because he has clearly worked on becoming focused, on staying deliberate with his movements, and he is acutely sensitive to the people he is working with.  This makes it very easy for me to let go of everything else in my mind and engage strictly in what's in front of me.  It also helps that he has excellent pacing, so I get a little faster, stronger, and more fluid, by working through.

Suffice to say, I learned a lot this morning about myself: staying focused on what is in front of me was a good lesson, as was speeding things up when it was time to raise the bar.  When I got home it was time to slow down and take a break, but I was so pumped up from karate that my roommate had to remind me.  Then I slept for four hours! 

Friday, February 14, 2014

While You Have Time

"While you have time, go live, because when you're lying in that bed you're going to want those memories." -World's Greatest Physiotherapist, Kelly

Warning, this post is a downer. I'm not sure what I need right now, but to be heard. Something like eight people with EDS / Chiari-I Malformation entered immortality this week. My sunken heart is with their families.

I was raised to not feel badly about death, so long as the person knew I loved them, because it meant that the time was not wasted. But I was never given the tools to contemplate my own finite existence, and I don't know whether anyone ever really is.

At this point my cerebellar tonsils are within normal limits and the dysautonomia is manageable with a port that feeds me a very uncomplicated chemotherapy of saline and magnesium. This will not always be the case but I'm fighting like H-E-Double-Hockey-Sticks to not only slow the decline, but perhaps to improve as well. All the same, when EDSers are dropping like flies it gets to me in ways confusing and frightening. Not only do I feel sick outside, but I feel ashamed inside when one of my early thoughts right after "May they rest in peace" is "wow, I'm really lucky that it wasn't me this time, or so-and-so, or so-and-so, or...." Even though I think this is a natural reaction it makes me feel irreverent, and I am sorry for that.

In my appeal to join the dojo on Day One I was honest, sharing that I had been terribly sick for three miserable years, that I was afraid I didn't know whether I had much time left, and that I just wanted a chance to follow my dream of practicing karate. I do think, especially now that I have grieved my wife and the child for which we had been planning, I want (read: need) to live doing what I love. I love karate.

This terrible physical existence, cruel mindf*ck, EDS life, cries for a space and time where it can just be, exactly as it is, where I can accept my limits by breaking through other barriers that aren't really limits.
Forgive me for this disjointed post (pun intended), I just need to clear these thoughts. They belong here because they are an authentic part of my experience as a karateka.

Every day with EDS is a terror. My body is better because of karate, but EDS will always be a terror. It's nice to hear now and then from people about how I don't seem nearly as diasabled as I did when I started karate.  But my disability is not going to go away, and it is not a shameful thing that I have to get rid of to have a disability. Even if I did want to hide it I would not be able to. Accepting my body for what it is does not involve a process of finding ways to seem fine. Accepting my body is a process of learning what it will and will not tolerate by continuously trying new things. With karate there are a million ways to perform one kick, so I can practice for as long as my legs will work. I will never run out of things to try and that is a treasure. I just want to live, and keep trying. Just until I can't.

Sunday, January 12, 2014

Some Days Are For Rest

There are days when no matter what I do I can't use my legs or escape a cervical collar. Some days I just can't get my blood pressure above 80/50. On those days, as my physiotherapist puts it, "when you're lying in that bed, you'll want to have those memories."  So much of my training involves the cultural aspects of practicing our Japanese-style customs, infused with the loving and supportive spirit of my dojo family. On those days when I've got my cane holding me up I'm thinking about who has hobbled beside me out of the dojo. When my muscles spasm all night long I'm thinking about how good it will feel to show up to karate the next morning and warm up a best I can among people who will be glad I made it through another night. I feel powerful love toward my dojo, a place where I will be guaranteed to connect with a sense of life, humanity, and every reason to keep doing my best.

A place that makes us want to become better as people must be appreciated and preserved. At the base of that work is appreciation for the relationships among the people who gather in that space, including the self.

My body will catch up. It just needs a little tenderness and careful management for a while. Or forever.

Thursday, January 9, 2014

Zebro Warrior Challenge Day 4: Sick As A Dog

Weak. I did whatever exercises I could do supine or seated and took a walk. My body aches. I think my quads are ready to burst away from the bones. Flank steaks.
I'm super hydrated though. Plenty of fluids. My guts are burbling, working on Lipton noodle soup.
Tomorrow's a new day.

Wednesday, January 8, 2014

Zebro Warrior Challenge: Day 3

The first two days were a cakewalk. It was easy to get all my steps in, practice my kata, do my physiotherapy, mokuso, set and meet an intention, and so on. It was easy because I didn't have to work. Just medical appointments all day and evenings at the dojo. Then today hit.

My intention for today was to keep eating small amounts of foods, leading with carbohydrates in order to keep the body in a constant state of peristalsis (active digestion). It seems to have gone well. Nothing came up and I did have sustained energy. I'll tell you, though, I am tired of eating. It's stressful stuff.

Today was a very full day of work. I didn't do as much on my checklist today. But I had an incredibly stressful day and I think this is a day when my body needs new to mind it gently, as I am also getting sick.

I'm trying to stay focused on the future. I really am. But my feelings for the past are coming up on me with a vengeance. I'm determined to hand them over to heaven without delivering myself there as well. But it's brutal.

My muscles feel fine. I don't have the stamina I had a day ago, so I must be fatigued. The stress of work isn't helping that, either. I would like to find ways to modulate my work day so that I take breaks more evenly and take better care of my stress levels while I'm there. I think that will help my body.

Monday, January 6, 2014

Zebro Warrior Challenge: Checklist Prototype

Today marks Day One of my Zebro Warrior Challenge!  I'm trying to build for myself a checklist of what I'd like to accomplish each day, to keep track.  How does this look?  It's far from optimized, hopefully some of you logic-type folks can help me fancy it up.  For more info on my challenge:

I'm really excited about this and I expect to put my full effort forth.  This starts today and ends 31 March.

Active Exercise
Exercise 5 min
Exercise 5 min
Exercise 5 min
Exercise 5 min
Exercise 5 min
Geki Sai Dai Ichi - Controlled
Geki Sai Dai Ichi - Controlled
Geki Sai Dai Ichi - Controlled
Geki Sai Dai Ichi - Full Speed and Power
Geki Sai Dai Ichi - Full Speed and Power
Geki Sai Dai Ni - Controlled
Geki Sai Dai Ni - Controlled
Geki Sai Dai Ni - Controlled
Geki Sai Dai Ni - Full Speed and Power
Geki Sai Dai Ni - Full Speed and Power
Saifa - Controlled
Saifa - Controlled
Saifa - Controlled
Saifa - Full Speed and Power
Saifa - Full Speed and Power
Sanchin - Controlled
Sanchin - Controlled
Pelvic Tilts 2 sets 8 reps
Isometrics: Legs 2 sets 8 reps
Isometrics: Arms 2 sets 8 reps with 1lb
Glutes - Leg extensions: 2 sets 8 reps
Bridge - 2 x 15 sec
Plank - 2 x 10 sec
Wall push-ups - 25 regular
Wall push-ups - 25 special
Leg lifts - 25
Mokuso (Meditation)
Set Morning Intention
Workout Mokuso
Dojokun / Prayer
Choose/eat one low-barf-index food
Choose/eat one low-barf-index food
Choose/eat one low-barf-index food
Enjoy (really enjoy!) a piece of fruit
Drink >20floz. Water
IV 2L daily
Meds 1
Meds 2
Meds 3
Do one good thing for myself
Do one beautiful thing for someone else today
One beautiful thing I see today