Deep Breathing and Protecting the Airway

Place three fingers right at the tip-top of your sternum, just inside of where your collarbones end. Now, gently turn your head from side to side.  When you feel your fingers move, you've found one of the points where your sterno-cleido-mastoid muscle (SCM) begins! The other is just a little bit farther out to the side, attached to the innermost third of your collarbone.  It's a muscle that helps with rotation of the head, and also lowering the head, among other things.   This tiny muscle is the HULK! Stick with me; knowing anatomy can help your practice, and can rock your sparring like a hurricane.

Every muscle has a point of origin (where it starts) and a point of insertion (where it ends).  The SCM has two points of origin!  It begins at the top of the sternum and the medial third of the clavicle!  Maybe this could be considered one big point, but because it attaches to two places, it makes sense.   The SCM comes together at the back of the neck.  This is usually injured if you experience whiplash.

Why is this beautiful?
Life has created an incredible tool for itself!

The SCM is a muscle that:

• Connects to two different body parts
• The sternum, which holds your ribs together.  That means the SCM is one of many muscles holding your rib cage in place so it doesn't tilt forward.  Imagine what this means for big-chested people: the SCM connects at the back of the neck, the Emerald City gates of all neurological function.  No wonder a breast reduction has serious beneficial implications on pain management.
• Changes direction
• Most major muscles have a "1 or 0" way of working.  The simple bicep either contracts or it doesn't.  The SCM is a muscle that everybody takes seriously.  A little injury can cause a lot of trouble.
  
  
  "And though she be but little, she is fierce."
  

  -William Shakespeare, A Midsummer Night's Dream
  
• Facilitates movement in many directions
• Lateral rotation of the head (side to side)
• Turning to follow the opponent
• Rockin' your very best kata
• Flexion of the head (up and down)
• Bending your head down to protect your airway
• Lifts the rib cage
• The SCM does part of the work of lifting the rib cage up so that you can take a deep breath, the kind that goes to your abdomen and makes you feel really good.
• Sanchin Kata
• Tensho Kata
• Tai Otoshi (body drop)

It's interesting that we have large sheets of muscle on the tops of our skulls because those bones are fused. One would think it would be thick connective tissue, although there is plenty of that, too. From my inexperienced perspective, the explanation may include that the muscles of the skull help facilitate developmental fusion of skull segments in babies, or working connection with the facial and jaw muscles. I've got to be missing something, though.

More info on the SCM:
http://www.innerbody.com/image_musfov/musc38-new.html#full-description

When I was studying medicine I had a place for these ruminations to go. Since I won't likely become well enough to continue my studies, I'm grateful that karate provides an outlet for my thoughts on anatomy and physiology (A&P). Ehlers-Danlos Syndrome (EDS) is a giant anomaly of A&P, but because I live with it at all times it isn't the healthiest place to nest all my curiosities. The lens of having EDS also produces distortions and bias, whereas karate is practiced and studied by a diverse population, and provides for more well-rounded thinking.

This whole post is a little heady (*snicker*) for a Sunday morning, but still fascinating to think about!

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.

Even Doubled Over Isn't Over Enough

Sensei gave lots of verbal instruction and demonstration tonight, so I was able to relax about keeping up. I learned a whole lot of great points about Saifa kata and bunkai. I consider Saifa my best kata, so a while night devoted to it was a treat!

It was especially a treat because this is my first day up after five days doubled over on the couch from gastroparesis pain. I've gone to work and slept, and that's it. Anything to keep the pain down. Nothing touches the pain. It's impossible to breathe without pain. If tonight had been a night to practice Sanchin I'd have been dead in the water.

I learned about how, when your body turns to do the knee-kick, your head turns because you are changing directions, so you need to continue facing the opponent.

In Bunkai we always push the opponent away after an application of the kata. It's a good base strategy to have, but it also signifies awareness (Zanshin) that the opponent is certainly going to attempt to counter your move.

The elbow break move is one of the most interesting bunkai I know. It's so simple, and it would be instantly effective on me, but I don't see myself ever developing enough strength to break the joint on someone else. Still, if I ever get control of my tai otoshi (body drop), maybe I can at least jar the person well and gain control of the limb.

While I rested I watched my karate family practice kakie (push hands). The black belts were more methodical in their movements while the -kyu belts were more aggressive. I enjoyed learning what I could from both groups, and comparing what I knew to what I saw.

It's always a struggle not to cry out in pain. Sometimes I can't help but let out a moan, which is frowned upon in self-defense, because it lets the opponent know you're hurt, and opens you up for further damage. When he's hurt Higaonna-Sensei says, "Thank you very much!" and continues on. Will I be able to cultivate that discipline? I don't know, but it's a good target.  Sometimes the strike or movement is tiny, but it sends a shock through my body like I've had a limb severed. Other times I take a direct hit and I giggle effortlessly. I don't understand nociception (pain perception) in EDS.

I did what I could tonight and was super careful not to push myself. There will be better days for going all out.

It would be arrogant of me to assume that Sensei did so much technical instruction and demonstration just so I could be included, but I can't help but think it delights him every time he sees me get up off the bench. I think most people in my dojo like watching me succeed as much as I like watching them succeed. (Well, maybe not that much--I'm a bit overzealous when they level up!)

After five days on the couch, karate is the first place I could think to go. There's nowhere I'd rather be. I think I've written it before that, die when I may, one of the rooms in my heaven will be just like my dojo. I don't have a lot of expectations for heaven, but it won't be heaven without this room.

Adapting Gekisai Dai Ni Kata

https://youtu.be/0Uydn4yEXe4

Gekisai Dai Ni is my hardest kata. It's extremely hard on my joints because of the rounded techniques, which take place on all three planes of motion: coronal, sagittal, and transverse.

For Ehlers-Danlos Syndrome, movements on one plane of motion are best. Movements on two planes of motion are okay. Movements on three planes of motion are a no-no because they most strongly force the joint into a closed-pack  position, with the highest congruency. In plain English, they mash the joint into its socket or capsule the most tightly, which gives it lots of opportunities for the stabilizing tissues to snap, tear, break, sprain, and so on.

Coincidentally, in a hypermobile person, a position at the end ranges of motion, with the most joint congruency, is often the most comfortable: everything is as tight as it can get. Many EDSers enjoy sitting with our legs contorted in unusual positions because, if we pin our legs down as far as they can go in any direction, we at least know where they are, and that they're tight. It gives a false sense of hope that our limbs will stay put. Over time, repeated activity at the end-range of motion will lead to further laxity and weakness. Then, when we need to do normal things in more reasonable ranges of motion, we fall apart easily and don't know why. (Well, now you know why.)

All kata in Okinawan Goju Ryu Karate feature rounded movements ("tripled" movements, when referring to planes of motion). It's one of our fundamental ways of moving, and for some applications it is indeed the most stable and effective.

With EDS, I reduce a lot of my dislocations by simply reducing my range of motion to five degrees fewer than the average person would move (which is 15-20 degrees fewer for me, and I'm EDS Classical Type, not even Hypermobile Type). It took six months to learn to walk this way, and six years to learn to live this way.

In karate, I reduce my stances, especially Sanchin-dachi (Three Battles stance), by just a few degrees. I have three goals with my stances:
1. Don't dislocate
2. Get the same functional outcome
3. Get the same aesthetic outcome

There are times when, curiously, I lose control of my legs. I can be standing, but unable to move. My fellow karateka will sometimes remind me what to do or encourage me to take the next step because the delay is very noticeable, but I'm stuck! EDS is given to neuropathy and radiculopathy, but I've never seen research on momentary paralysis. (Perhaps it's a Chiari-I Malformation thing. I haven't jumped down that rabbit hole of research because I don't have it yet.) I finish the exercise and then take a break. Lack of control of major muscle groups is at least a sign of fatigue.

For upper body movements I have the same goals with my thumbs, shoulder blades, and wrists.  It's even harder with my upper body and I stand a good chance of being sore in the clavicles and ribs for weeks if I ignore those goals. It can interrupt my breathing, and make me even more susceptible to blacking out. I'm getting pretty good at managing it, though. I keep my knees bent and my eyes open until my vision comes back. I don't fall over anymore.

Gekisai Dai Ni is my hardest kata. I took second place in a tournament two days ago, but popped my ankle in the middle of the first neko ashi-dachi (cat stance). Stupidly, I finished the kata, because I didn't fall over, and my head was in "the zone." When I stepped on my busted ankle for the second neko ashi-dachi, I knew I'd made a big mistake. I took care of it immediately after.

My ankle already been coming loose for days and I ignored it, since that's not uncommon. Rookie mistake. I was so pumped for the tournament that I didn't pay attention to my body, and that's where I went wrong. I splinted the next day, but the pain crept up into my knee and hip, so that the whole leg was wrecked by Saturday morning. I missed out on Spirit Training and the karate family Potluck, both of which are highlights of my entire karate life. Instead I'm in bed with my leg elevated, blogging about planes of motion.

For some joints I've learned to finish kata with a dislocated joint, and put the joint back in place later on. It just pops out again if I stop and try to fix it in the middle of a kata. My fellow karateka are used to hearing me popping bones around, so they don't freak out, which is great for my emotional health.

Gekisai Dai Ni is my hardest kata. I need to practice it. I need to modify it and practice that. I could always ask for a different kata, but I want to master it in my own way, even--especially--if I can get through it with adaptation. That's the name of the game.

The best part about my second place ribbon is that the person who took first place has been working very hard on his performance, and he's worked with me on kata a lot! He deserves that blue ribbon, and I'm proud to take second. What a great memory, to compete next to someone who has worked so hard, and for much longer than I have!

Be well.

Some Nightmares Come True, So Do Some Dreams

Five years ago I was facing cervical fusion, going into shock every other day from venous access, stuck to an IV pole for nine hours a day in a nursing station. I couldn't turn my head without passing out and the diagnostic process for Dysautonomia was cloudy. I underwent testing for Chiari-I Malformation, lived in my cervical collar, and suffered overwhelming amounts of physical and psychological pain 24 hours a day.

I didn't know how much time I had left to go on like this or who could help me, but it tanked my life. It bled my savings and retirement dry.

My (ex-)wife was miserable, I was miserable, I was just a few months away from graduating from college which had taken me ten years to complete. My family was furious and "disgusted" with my IV fluids, not convinced that drinking more water was not working. My work was very compassionate but worried about my ability to perform. My friends were scared. I was scared, and fed up. I could not continue pre-med studies.

Three years ago began refusing treatment and my doctor stood up for me (again) to tell my insurance that this was not working. I got my port 28 June 2012 and things got immediately better. By August I could get my port accessed once a week at the nursing station and run my IV fluids at home, during which time I rested, worked, and did physical therapy to rehabilitate myself. I still could not regulate my body temperature or stay conscious over 65°F.

I started practicing karate on 9 October 2012. That was the day my real life began. I could stay conscious if I ran fluids. By November 2012 I was able to access my port by myself (which saved a lot of money!) and I got an IV pump which allowed me to run IV fluids on the go with a backpack. I still follow sterile procedure like my life depends on it--because it does.

My physiotherapist told me, "While you have time, go live. Because when you're lying in that bed, you're going to want those memories."  I had wanted to practice martial arts all my life. No dojo would work with me because they were afraid of liability. Finally I met my Sensei, who let me try, and we were very careful. The rules were (and are) strict, to ensure my safety and success. Everybody was worried about whether I could do it, and I didn't care. I was on death's door with blood pressure collapses and had lost a hold of my dreams. What if this port thing was my last chance at living?

I wanted martial arts. I wanted EDSers to be able to protect themselves. A martial arts seminar showed me there were things I could learn to do; once I knew there was a dream within my reach I wanted it. I told myself that if I died after that, I would conclude that I had been a useful person in this world. I asked God to just give me this one dream, give me one merciful gift before I fell to ruins. I begged for strength, and my port was just enough to bring strength back to me.

I proved to myself I could do it, and set out to inspire others with EDS to learn what they CAN do. Today my dream came true, thanks to my Sensei, my doctors, and my friends.

Today, on 14 August 2015, I co-taught, beside my Sensei, a session on Self-Defense and Martial Arts with EDS and Dysautonomia. We showed people that everybody could do /something/. 

At first people were nervous about what they couldn't do without dislocating. Sensei dispelled their fear using the same basic techniques that I found so grounding: he started with curling the toes. So small a thing, but so simple. I watched a room full of antsy people wiggling little tiny toes, watching those toes intently, and succeeding. The tiny toes curled down into the floor, curled up, and down. The corners of mouths curled up and stayed up.  If only for a moment, a room full of people with EDS found a physical thing that they /could/ do.

It was like we'd unlocked a treasure chest, and the doubtsstarted coming: what about my ankles? What about my balance? What if I can't stand? What if I can't take my shoes off?

Within minutes, those doubts became wonderings: "How can I do this if my ankles are loose?" "Can I do it this way?" "Will it work if I do this instead?"

I understood for a brief moment that what I had done in pursuing martial arts was larger than just overcoming my Dysautonomia and chronic dehydration. Today I changed the way at least one person perceived their body.

Die when I may, I finally feel like I've made at least one satisfying change in this world, one real act of gratitude for all the kindness that has cushioned me along the ridges of a very, very hard life.

Thank you all for your help along the way, and for helping make my dream a reality. I think I  finally feel brave enough to dream again. Yes, I'm ready now.  Onegaishimasu.

Be well.

Stay Tuned

Topics to cover:
Finding a Dojo
Getting Started
"Am I cut out for this?"
"Can my kid do this?"
"Can I afford this?"
Dislocations during practice
IV Fluids during practice
When Injury Happens
Skittish Partners
Reasonable Accommodations / Doctor's Note
Adapting Specific Moves
Technique Is Power

Karate for Life, From Head to Toe

This morning I washed my hair in the sink, which I do when I want to use hot water, because I take cool showers to avoid passing out.  I felt the rug bunching up beneath my toes because I had been gripping it like we practice gripping the floor in karate!  I knocked one of my knees (gently) against the cabinet because I had been keeping my knees slightly bent as I'd practiced in physiotherapy!  This is fantastic!  A year ago I could not have washed my hair easily, and my hair had been shaven short.

Not everyone who practices martial arts will subscribe to martial arts as a lifestyle.  But everyone who practices martial arts will, at some point, observe a lifestyle impact.  Clearly, the lifestyle impact for me has been profound, by the cumulative impact of small changes.  For one thing, I don't fall so much anymore, which means I don't carry my cane so much anymore, which means my hands don't suffer so much, which means I don't suffer so much.

Sensei says it's when we are tired that we need to work the hardest to stay focused.  He also says it's important to focus on the small things, like foot positioning.  These points have worked out well for me, without having to be complex.  Goju Ryu can get complicated, but the most basic elements are straightforward, which helps me stay grounded, with my feet firmly planted, and my toes curled around the rug!

Be well.

When It Gets Tough

Doubling over in full spasm may make it seem like I did my best in karate, and maybe I did! But I missed a cue somewhere that it was time to stop, so I will work on it! It's hard to know when something like that is a one-off or if there's something wrong with what I'm doing.

Since achieving my 4-kyu karate has gotten particularly hard. It used to be challenging, now it's hard. My skin tears open, my feet get shredded from movement, and I am so tired after class that I have to go right to sleep when I get home. But I'm satisfied with my effort, I've had a healthy amount of social interaction, I've had fun, and I fall asleep happy.

Even though I seldom get through a class without breaks I love to be there, and I look forward to going. To manage the pain I take breaks to stretch, manage pain, and hydrate. This morning I had taken a stretch break, and perhaps it would have been better if I had stayed on the bench afterword, but I ask myself, how am I to improve if I don't challenge my boundaries?

Testing boundaries is something we all do from the time we are little and we learn the word "no." The way I grew up, everything was a boundary, the boundaries moved, and it was dangerous to cross those boundaries. The only residual part of that muss with EDS is that the boundaries change, relative to my health that day. But some of the fights and stamina exercises are starting to remind me of those days. It's an opportunity to let those feelings come up and to work through them in a safe and positive environment. However, working with a counselor helps me unpack those memories, so I don't have to worry about sorting them out during a workout. I can acknowledge that they're there, make a mental note to process the memories later, and get back to my exercise. A lot of people start karate because of a traumatic past, whether it be ongoing abuse or an isolated event. It's important to keep those feelings in check because they can make you vulnerable or distract you. I keep it simple by telling myself those are yesterday's feelings, and then I take a second to connect with today's feelings, all infinitely more enjoyable.

My feet and ankles hurt a lot in class. I stop often to put bones back in, or to give them a break. I try not to let it interfere with my kata, and I work through the physiology of kata movements to see if better precision with foot placement can help. It usually does, much to my delight!

Breakfalls are still scary.  I think strategically about whether or not to let my partner drop me to the floor, and most times they do so very gently.  I haven't thought of safe ways to practice falling, but I'll come back to it.

I'm not worried that I won't be able to get to a black belt level. I'll work hard on the technical aspects and do everything I can to maximize my moves. That will take practice, my meds put me into a stupor, and I can't always decide which move to do next. But I think I'm at the proper level at which anybody with my rank would be if they had my challenges, and I trust my Sensei's judgement. He wouldn't promote me if I didn't belong in that rank because it would be unfair and unsafe. We don't work that way in my dojo; egotistical risks are rightly frowned upon.

My greatest ally is my Sensei, of course. With all of this, he is well aware of my situation and he has an incredible way of helping me through. Not once has he ever cut me down, complained, or yelled at me for not being able to do something. If I bring it up he says to just keep coming. He never makes a big deal of it, and it's never been a big deal. I need that. I need a place where my health is not going to cause a big ruckus that comes down on my head unexpectedly.  My whole karate family is great about it.

Not the best blog post, but it's where I am at the moment. Other than that, food is staying down thanks to Phenergan and I've got a little bit of energy back. I just need to keep eating, which I never want to do. But if it helps my karate, I'm in. :)

On my way out of the dojo today one of our teens held the door for me and said, "Good job today." Then I knew that I was on the right track. I love working with our teens. Every time I see them I greet them with genuine enthusiasm and eye contact. They've all picked up on it and they now return the gesture. I love it! They are all working hard to grow into good people, and though my part in that is small, I'm thrilled to have one. They brighten my life, and that's one of the million reasons I love karate!

Be well.

Back In Action!

Since I started karate in 2012 this month is the longest I've gone without attending class. The meds have been too heavy and I have been too sedated to do anything satisfying, let alone the most satisfying thing in my world. I've kept up with my studies, practiced my kata, and made every effort to navigate the medical mess of Ehlers-Danlos Syndrome.

It's been seven years since I began refluxing everything that I ate or drank. I'll spare the details, but it's been a long road. I'm finally getting some answers, or at least a working diagnosis, which is better than having them throw handfuls of pills at me in ill-conceived, but well-intended, attempts at controlling the emesis.

When I read my own descriptions of what I'm going through this sound awfully severe. I've learned to get through it without really noticing, which probably makes it more tolerable. However, in karate we are challenged to face what is hard for us and to gain control of the situation. On some level, it is important that I stay aware and reflect on how my body is changing so that I may take good care of it.Tonight was the first night I got back to the dojo! It was very exciting, I get like a little kid! Karate is the thing to which I most look forward, and some people don't look forward to anything as much as I look forward to karate. I let myself appreciate it with every possible ounce of joy that I am capable of feeling.

My goal tonight was to get through warm-ups. Strategically, I had plans to manage my participation by restricting it to half of what I was asked to do. Imagine my delight when I figured out that a month off from karate has given several joints time to heal, increasing my performance! I did rest, but I also pushed myself. I feel great about it!

It's hard to know when to push and when to rest. There are so many benefits to be gained from both, and just enough danger in too much of either to keep me circumspect. This was a constant problem in physiotherapy. At some point my physiotherapist intimated that she had stopped trying to guess what was wrong, and jumped straight into helping me recover. That little bit of information has been quite useful, in that, I am finally using less brainpower to find the source of problems, and allocating that headspace to resolve, recover, and adapt.

One might consider me a highly sensitive person. As such, it can be so overwhelming go through my body's changes that I somehow detach from having feelings about it, just so I can get through it. That may not be a bad thing, because much of it is a sense of loss about which I can do nothing but grieve. Maybe grief will be useful later, but I don't see it helping me right now. Hopefully it won't creep up on me!

On Femaleness and Flight

I've never met Marchant-Sensei, but from what I've read of her life and times she is a Dame of ever there were one. I'm grateful to be a part of IOGKF, humbled to share a /mon/.  There will always be cups for tea at my table for her.

Linda Marchant-Sensei is the highest ranking female karateka in IOGKF. She had a high-paying job in the UK, and left it behind to pursue her passion as a martial artist. She succeeded, too. Like every rounded pebble that tumbles over Niagara Falls, you don't become so well rounded without tumbling a long way, getting knocked around and bumped, before becoming just as smooth as the waters that carry you through time.

On the other side of this thought trail stands a fellow karateka in my dojo, a /Senpai/ to me, also dedicated beyond compare. An artist, she studies the body in total, learning to read every curve and arch, working in the dojo to see how those angles change and shape the /gi/ which shroud the figures inside. She is so young to carry this largesse of curiosity, with shoulders already conditioned to bear such weight on a very thin frame. She could remind us all that "thin" and "frail" are not synonyms.

The feminine side of karate is so often characterized by a white crane. To stand before a white crane demands respect for every such creature that ever put itself through the rigor to learn to fly.

--------

These days it is impossible to say just what I mean. As I continue to fight nausea, pain and fatigue, my feelings and thoughts have the impish drive to swell in my head and demand to be known. I have only a fraction of the energy I need to host them all, barely enough. My blog posts may be short for a time but I will continue writing them. It makes me sad to report that I'm still sick. Even though Ehlers-Danlos Syndrome is a cradle-to-grave companion it is still very much unwelcome.

This is a tournament week. I'll harden my thoughts to the point that, even if I don't fight this time, I truly have yet to spread my wings. I must believe that old axiom that says, "the best is yet to come," because I am nowhere near as fierce as I shall be when I finally fly. If femaleness of what I've got to work with, then truly, I am in the downy company of the finest flock.

Be well.

90 Days Sick

Another night sick as a dog. Back to fully dehydrated despite fluids. I reviewed some kata in my head but I'm too tired to think clearly. I'm determined to be strong, the enemy isn't going to ask if I'm feeling up to a fight.

I've been intensely sick for 90 days as of today. I spent the last week in March in the hospital and have been struggling desperately to recover.  I've had a gauntlet of the most gross medical tests I can imagine having done, and have more to go, before I get any answers. Until then I'm on a rainbow of pro-motility agents that work on my guts like your friendly neighborhood jackhammer.

Gastroparesis is the working diagnosis but my emptying study turned out negative. The radioactive eggs weren't all bad, but it was the least disgusting of all the tests, with this Friday bring the grand finale of gross.

I'm afraid to eat because my guts are like tubes full of grenades. I'm afraid not to eat because no food means no energy. Every few days I eat full meals and get so sick that I end up dehydrated and exhausted. And doubled over in pain.

My couch and I are very close these days. I haven't seen the dojo in over a week and my toddler mind is afraid it won't be there when I get back.

In my mind I'm going over kata, but I'm really so tired...so tired.

The enemy is not going to ask if I'm tired. I need to keep fighting. It's in my blood.

Oh My Gasshuku!

Susquehanna Martial Arts Symposium 2015 was wonderful, an irreversible, transformative weekend for me as a disabilities advocate and as a martial artist. I am so, so grateful. I've also had a great deal of much needed fun!

Arrangements were made so I could stay in the dorm with a most gracious hostess of the same rank. Bring able to stay on campus at Susquehanna University where the event was held made it as easy as it could be.

I brought 10 syringes for med injections and not one of them was a Luer Lock, so I couldn't screw them onto my port cap to inject meds.  In the future that's got to be my #1 priority.

I had some conversations this weekend about developing as a martial artist with multiple disabilities. I learned the following: I'm not taking it seriously enough; one cannot take it seriously enough; I take most things too seriously. My point: this is going to be an even bigger process than I thought. However, IOGKF is disability-friendly, and many even seem interested in learning how far the style can go to be adapted to everybody's needs regardless of ability.

My Sensei has taught me so well that I was able to keep up, relax, and enjoy myself. That's a very big deal. I keep finding myself wanting to look over and say, "Did you see that, Sensei?" he probably did, but he doesn't have to, because he knows. That's awesome.

The week prior to the event I was in the hospital with gastroparesis and a blood pressure of 66/40.  To put it in perspective, when you hit 70/50 Hospice starts making arrangements to keep you comfortable on your way to wherever we all go.  But I'd waited for this event!  My heart was in it, and so many people have put effort into helping me grow that I thought, if I'm going to fight like hell in the hospital, I'm going to celebrate the life I'm working so hard to live!  So I went.  I schlepped my wheelchair, crutches, braces, splints, creams, meds, potions, lotions, emergency paperwork, IV fluids, stabbin' supplies, and an indefatigable attitude.

It's important not to think of myself as less-than, or as a pain in the neck, for being sick, and wanting to live a full life.  That's not my best asset because of the way I grew up.  The night before the event I asked Sensei, "Are you sure it's okay for me to attend this weekend?"  With a gently irritated, measured tone, Sensei asked, "Why would it not be okay for you to go this weekend?"  I didn't go any further with how I worry about ruining someone's day if I get hurt; or about how disappointed I'd be in myself if I got all the way there and then was too tired or weak to participate; pr how badly I would feel if I interrupted the entire training by dislocating a joint and crying out, freaking everyone out, etc. (that last one happened).

Instead, I took his tone to explain that if I want to get anywhere, I cannot be apologetic for my challenges.  I can be modest, grateful, and realistic, but not ashamed.  It's a terrible and crucial lesson for all of us to learn, regardless of ability.

The best feedback I received was about the use of my wheelchair during training.  I stand in front so I can read the instructors' lips, and that makes me very nervous.  I'm used to being in front to hear, no problem.  But in karate, rank and file trump most other things.  I didn't want my wheelchair in the way if I wasn't in it because I was in the front and already out of order.  The last thing I wanted was for every surrounding black belt to have to dance around it.  It was suggested that, by having my wheelchair off to the side, I made more of a disturbance, because I had to walk into and out of the training space to get seated or get up.  Particularly frustrating was my extra long IV tubing, which often got caught in my wheels.  I was afraid the entire time that I'd nick the line, not know it, and leak IV fluid and blood all over the floor.  Nevermind the fear of exsanguinating with an already-low blood pressure.  There's always at least one medical professional on the floor at gasshuku, which is a big relief, even though they're off the clock.

All this, just to practice karate.

Thanks to everyone who helped me get through the weekend and maximize my learning, I came home with two whopping pages of notes!  I'm a succinct notetaker, so that's a lot of notes.  I've added it to my arsenal of information and it's a trophy in its own way!

Recently, I learned that, in addition to my ossiculoplasty (ear bone implant), my tympanoplasty (ear drum graft) has also officially failed.  The ossiculoplasty has slid out of place and the graft has dried and shriveled up.  That explains the Cognitive Auditory Processing Disorder, which is making it harder and harder to hear.  At this event, I introduced myself as "deaf" instead of "hard of hearing." 

I've spent my whole life trying to maximize the hearing part of my existence, again because of the way I grew up.  But there are perfectly good adaptations in place that support the deaf part of me!  I've moonlighted since my teens to learn sign language, learn to lipread, learn to listen to tones and interpret phonics at jet-engine speeds.  I sign lowly into my lap or into my hip to compensate for my loss of auditory memory, just little notes to myself.

Saying, "I'm deaf" gets me the exact results I need: People face me, they enunciate, slow down, and thanks be to God, they don't scream!  They just keep their heads steady and speak with measured intonation.  I'm at least half-deaf, more like 65%.  So, I think it's fine to use the word.  Deaf (capital-D Deaf) people tend to use ASL as their first language, and interact primarily with other Deaf people on a daily basis.  Most of my own world is hearing, which makes it complicated.  It appears that "hard of hearing" (HoH) does mean to hearing people what it means to HoH people.  Needless to say, being confident enough to say, "I'm deaf" makes the whole process of communication easier for everybody!  I wish I'd known sooner!

A good benefit of having people understand that I can't hear them is that they sometimes stop speaking altogether.  When learning a new technique I cannot focus on the audio and visual at the same time.  Doing it silently, then talking about it, helps immensely!  Back at my dojo, the Sensei have taken to saying, "Now watch me," which cues me to turn and get to where I can see the demo or lipread.  It's amped up my progress considerably.  I have far less fear about not hearing being deaf than I had a year ago, which is the most transformative bit, among so many others, from Susquehanna Gasshuku 2015.

Many thanks to everyone who put time and effort into helping me have a wonderful time!  Arigatou gozaimashita.  I will continue to study everything I have learned about myself and about karate, with great respect and gratitude.

Today would have been my Papa's zillionth birthday.  He would have liked the idea of me learning karate.  Tandi manu diu li benedici, Papa.  Many hands, God bless them.

Still Meaningful

There's a lot you can do besides those two things, work and raise a family, but they're a big part of a person's identity, which able-bodied, neurotypical people, don't seem to understand. There's being a friend, community member, volunteer, even just surviving, you are giving those around you experience and awareness that they would not have otherwise.

Just try to leave things one step better than they were the way you found them. You can never really know how far the effort will run. Like planting a tree for shade in which you'll never sit.

Great advice, right? But I'm still struggling to answer, "What are you looking forward to these days?" with anything more than "karate."

My ex and her new spouse had the baby for which she had been letting me plan while she made her exit strategy. It's even more brutal to let go of the baby we were so close to having, than it was to let go of her. I don't put my heart lightly into things, as can be seen with my commitment to karate.

At the dojo I've had to stop working with the children because my heart breaks into a thousand shards of sorrow when I see a wash of eager little faces, and none of them are mine. I am so proud of those kids, and worked enthusiastically with them when I was expecting my own. But I can't hold back the tears anymore when they come in, and the last thing I want to do is being my feelings into the dojo. That's where I go to get away from such pains and pressures, in the same way that a church pew takes away the pressure, like someone else is holding the reins for a little while. So until I'm stronger, I'm finding other ways to be useful there.

Medical school didn't work out. Marriage didn't work out. Children didn't work out. I don't feel hopeless, like the last two things could never happen. Rather, I feel like it shouldn't be this hard to achieve such basic elements of human life. It took seven years of fighting the laws for the right to marry her, and I, not believing in divorce, was ready to commit. I was ready to give up every possible comfort to raise a child instead, to give it everything it needed. But it was not to be.

I help so many people, hundreds or more, and I accomplish more than I can get down on paper. So why can I not be satisfied with that? In Japanese there's a word, "Bosatsu." Bosatsu is one who gives up heaven to help others get there. Why isn't that enough for me? With as powerful and effective as I am, why can I not commit to such a life of valor and kindness? It seems like that's my strength, and that I would be happy to have identified my strength so I can maximize the good that I will do with it.

I've decided to pursue a Master's degree in Social Work. After that I may pursue a Medical Social Worker's license, which puts me in the medical field, albeit not where in the field I had planned to go.  I hope with all my heart that through my martial arts training and my graduate studies I will be able to let go of desires for myself, and learn to be contented with what I can offer to other people. We'll see.

All I know right now is that karate is holding me together, and if I lost that I would be in a very bad way. Thank goodness it's not going anywhere. It's a part of who I am and that's not going to change now.

This is a pretty emotional post but who's to say that inner battles are not just as real as the ones we practice to fight in the dojo? Balance... Balance.

It's time to find a new dream. Maybe digging down into something new will kick up enough dirt to bury the dead and deferred dreams. Face forward. All that healthy stuff. My marriage died, not I.

Be well.

Holding My Own

Karate takes discipline. I would say that I waste a lot of discipline on just staying well enough to get to karate. But if I make it, my discipline is not wasted.

Nobody denies the reality of that feeling when you're down that the terror will never end. When I'm sick, weak, in pain, barfy, or sedated, all I can think about is that I don't know what it's going to take to get me back to the dojo, but I know that it's more than I have at that moment. How easy it is to feel that the defeat is ultimate.

Either somebody said to me, or I read, that when you miss a few classes, but you're in it for the long haul, it doesn't matter too much. That is, when being a martial artist as your way of life, it cannot be taken from you so long as you live in that way. Thats why its called karate-do. Whenever I had discovered this point, I didn't internalize it right away because I didn't know how powerful and moving it would be for me.

Still, karate is literally everything I look forward to in my life. That can either be seen as sad or dedicated. Either way, it's quite true! Most decisions I make are predicated on whether or not they will improve my karate, or my ability to get to karate. In fact, I wish I had even more discipline than I do, but I suppose that's everyone's wish.

Between Christmas Eve and the middle of February I was ridiculously sick with one infection after another, and then the rest of February was a rehabilitation period. I had my physiotherapy list earning her money for sure, trying to keep the pain under control and trying to put a floor beneath me so that my condition wouldn't get worse. Much to my pleasure, she succeeded and my rehabilitation time has been a lot shorter, with bigger benefits, than ever before. That's also because of karate, at least in part.

My friends know well that I am not modest. Sometimes that's not a very good thing at all, but when it's time to look at whether or not I am loyal to what I believe in, there is seldom any question of what matters to me. I work hard to succeed in karate, and I'm quite proud of myself! But I could never excuse myself from the humility love knowing that I couldn't do it without the help of many other people, especially my Sensei.

When you think about taking martial arts classes, a part of you may think about the fact that this is a teacher providing an athletic service of instruction. On a fundamental level I suppose as much is true. But after you've passed out, dislocated joints when nobody's even touching you, cried at a sudden flood of awareness of your progress, and used the stability of your class schedule to get you through hell, then being a martial artist is no longer a matter of going to the gym and working with a very dangerous trainer with a black belt. Then, being a martial artist becomes the beautiful thing which is the art.

A Sensei does a lot for each seito (student). When you're gone, they look for you. When you're tired, they tell you to push or tell you to rest. When you're sick, they expect you to take care of yourself and return. When you're careless, they bring you back to earth. When you're hopeless, they hold a safe place for you on earth until you can stay grounded on your own again.

Karate is not a thing I do. Karate is a thing I am, and a thing I need.

When you're a religious person you go to church. Sometimes you connect and you feel very energized, and other times you sit in the pew and wonder how things could have changed so drastically in your relationship with a higher power. But church is the same. It is you who have changed.

I'm a religious person but I have had a terrible time finding myself comfortable in a church. Being Catholic, Church policies are incompatible with my values. Protestantism is a little bit confusing for me, but if I could find a Protestant church that would probably be ok. Even that is difficult to say, because I would never want to expend any energy which keeps me from karate. Sunday is my day to rest, and I very much need to rest on that day. My sensei and many other people in my dojo have a strong religious values, but in this type of church our beliefs never get in the way of who we are as people. That's the kind of religion I can get behind.

Each day I sit in seiza, kneeling, and reflect with these two meditations:

Warriors of Grace Karate 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.

The Lord's Prayer:
Our Father, who art in heaven, Hallowed be thy name. Thy kingdom come, Thy will be done, on earth as it is in heaven. Give us this day our daily bread and forgive us our trespasses as we forgive those who trespass against us, and lead us not into temptation, but deliver us from evil, for thine is the kingdom, the power, and the glory, now and forever. Amen.

That part about trespasses is really hard, but that's what I work on the most during Lent. It'll probably take a few more iterations of the season to really understand that part. Until I am humble enough to really own that, I'll keep practicing. That's a Black Belt attitude. My goal is to be able to hold it, own it, and live it. For me, karate is the way.

Be well.

Dojo Family

I can't seem to let myself sleep. I'm overcome with gratitude for how supportive and accepting my Sensei and dojo family are. I had to finish class in Seiza (kneeling) because my legs had given out after Sanchin.

We worked on breathing kata: Sanchin, Higaonna no Sanchin, and Tensho. We did a bit of Saifa kata too, focusing on tai otoshi movements. I had to sit down for those, the pain was too high.

Earlier in the day I'd had dental work done. Although it was just fillings my body went into full spastic awfulness and I blacked out. I worked with my Physiotherapist after that to get the spasms under control, but then I was exhausted. She did a stellar job of using distraction to get my shoulder pain down, which was no small feat.

By the time I got to karate I was wiped out. But I was wrecked emotionally from how hard this day was. I needed to be with my dojo family. They were patient with the noise I made as I staggered in, and I wasn't surprised that they were welcoming, as usual, as I came onto the floor.

I feel less self-conscious in the dojo than I do anywhere else in the world. My gi looks the same no matter what pronoun. Whatever my body can do is enough.

It just feels good. It feels so good that when it's time to return to the pain as a limiting entity, I struggle to cope.  More on that later. For now the point is that I love my dojo family.

The Right Side of the Dojo

Karate prep: Townsend Rebel Reliever leg splint to keep my lower leg in place. Shoulder sling and finger splints on the same side.  The enemy isn't going to ask if I'm okay, so it's time to train and find new strengths. KIAI!

I made it through half of karate class, but it was a very intense time using only the right side of my body! It gave new a chance to learn what I could do in different ways.

We started off with drills. Punching, I worked hardest on pulling my punch back to chamber, knowing that such a move could be used to jab the ribs of the person behind me, or to escape a hold, as is done in Seiyunchin bunkai.

Practicing blocks was the most interesting thing, because when we're doing a drill with both hands I don't think about the hand that's returning to chamber as much as I think about the front hand and its major movement. Having just one hand, I paid much more attention to the directions of its movement; the way in which my hand was facing; and what it was blocking, or leaving open. 

Working in pairs was fun because I had to get creative with bilateral blocks. If the punch was right-to-right handed I did the traditional block. Right-to-left, inside block.

When I got home I had some oatmeal, then I rested on the couch as is my Saturday ritual after karate. I slept for six hours, which was not part of the plan. I should have noticed this when I was too tired to set an alarm, because I slept right through the time to take my afternoon meds.

Ehlers-Danlos Syndrome is a lot to manage. I don't blame anyone who struggles with it so much that they don't do much else, but I do wish everyone could find a way to get a little exercise into their routine, or something they can look forward to doing with their bodies. 

It felt like the other people in the dojo were watching to see how I did things. Their faces said different things: I don't know how you do it; I would never do all that just to come to class; If they can do it, I can do it; I guess I have no excuse not to be here. These are things people say to me, so I know that this is what people are thinking. I'm not supernatural, and I have no intention of inspiring able-bodied people to go beyond what is reasonable for themselves. Able-bodied people are not used to being in crushing pain 24x7; if they had had the injuries I dealt with today, they might have rightly stayed home, for hope of healing. 

Much to my comfort, nobody said I was a distraction or that I should have stayed home. I would rather get a thumbs-up for splinting correctly and showing up than a pitiful face for being in splints. I'm always worried about hearing that I should have stayed home, or that I'm bringing everybody down, because that's how my family has reacted in the past. They seldom do anymore, but it's a doubt that I carry. At the dojo, however, people expect to see me in whatever I come with that day, ready to learn. We are all working through some challenge in this lifetime, and I'm glad that we all spend a few days a week going through it together. I can let my guard down; nobody is going to tell me I should have stayed home because I have EDS or because I can't hear.

My hearing seems to be failing further, that's bothersome. My hearing aid causes piercing pain.  My ear bone implant causes extreme pain and I want it taken out.  I'm not sure I understand how to let go and go back to deaf when all my friends are hearing; I am afraid that my hearing loss will be much worse now because I've had several years with Cognitive Auditory Processing Disorder to scramble up what is left of the hearing in my "good" ear.

I have more to say but my shoulder is killing me, even though I haven't even used it today. I'm confounded by this. I'm also totally wiped out. I slept all afternoon and will still sleep through the night if I can keep the pain under control. This day is still a success because I learned a new thing. 

What It's Really Like to be Karateka With Disabilities

I'm writing this entry to invite able-bodied, neurotypical karateka into my world. My goal is to help improve upon the understanding of all the "inspirational" videos of people with disabilities performing as martial artists, under the impression of "NO EXCUSES" being the reason we do it, when really we all have our own motivations, no matter our level of physical, intellectual, or emotional function.

These are some of the thoughts that go through my head when I'm sick. It's been three weeks:

My body wants to turn inside out. I just know it. Nowhere doesn't hurt. Even my eyelids hurt. Why? No idea. Just hurts and feels gross. Anxious about teaching tomorrow. Trying to sleep it off isn't working. No way out today, just gotta go through. :( Lonely sad anxious sucks sucks sucks. Wish my PT were here to help me.

Oh..uh..Hello, Mr. injection. I didn't see you there among the other vials. How long has it been? *fail*

Bending fingers backward beyond reason is both a violent self-defense skill and a medical diagnostic test for Ehlers-Danlos Syndrome, the Beighton Score.

Meds for the muscles. Cream for the skin. Vials for the barf. Fluids for the brain. Sometimes I think it's all potions and snake oil, until I stop taking it or don't have it when I need it!

It's not even pain, exactly. I can't explain it but I need it to stop. It just feels like maybe a hyperbaric chamber might help? Like my muscles want to crawl away from my bones. All kinds of terrible visualizations come to mind but none quite explain how bad it feels. I've got everything I need except relief. I'll be so happy to be on the other side of this! If I could, I'd stuff myself into a crockpot and set it on low to let these muscles melt away from their fascia and bones. (Whoa, that's heavy.)

Work would have started 17 minutes ago. Not today. Nope nope nope.

Well, bowel and bladder training are paying off. Thank God for small favours. 

Well, I guess the benefit of being sick and not wanting to eat is that I met my weight loss goal 6 weeks early.... Just oats, salsa and broth, mainly. My weight will soar when I start eating solid food again. EDS suuuucks. But I'll be okay!

My bed has seen too much of me. But I'm afraid to go out alone for fear I'll be too exhausted to drive home. I'm afraid to do much of anything because I'm so shaky, even PT. This is a time to be mindful, to know it'll get better, and to practice calmness. NOT MY FORTÉ!

------

I'm grasping at humour to keep things positive; reaching out to anyone who will send an encouraging word, which I seem to need above my own voice at times like this; relying on meditative and faith-based techniques that work for me when time are better, and remembering that this is only temporary.

I've been doing 100 Mawashi geri  (roundhouse kicks) a day until I get to 2015, which keeps me oriented toward getting better so I can participate in karate as fully as possible.

Higaonna-Sensei suffered an aortic dissection, and survived! Many pepe with Ehlers-Danlos Syndrome die of aortic dissection, and there have been deaths in my family from aortic aneurysms, so it has frightened and upset me a great deal. I've never been one to worry about death, but I'm shaken up by the idea that other people can survive aortic dissection. I don't know enough about it to process the whole thing, really.

I'm praying for Higaonna-Sensei's recovery, which I know will be slow and difficult. I wish I could be beside him in Okinawa to tell him he is amazing, inspirational, and that I feel for him.

When I'm sick, I'm stuck alone in bed with just my own mind. It can get like a bad neighbourhood, not a place I want to hang out by myself. So I need to reach out. Other people may not, but it helps me. I'm a social being, whether I like it or not, and even though it drains me I need to put myself around people. Sometimes I don't even have it in me to invite somebody over, and that's one of the roughest spots to be in. When I have home health care it's easier because the appointments are set up ahead of time.

It makes a very big difference when someone comes to my house and works with me on my body's needs for that day. It increases my chances of being able to do something independently later. Today, I couldn't even fix a bowl of Cheerios, and I'm not hungry, anyway. But after working with my PT I'm usually upright and ready to eat. She always offers to help me fix something to eat, but by the time she's done working with me I feel ready to do it myself.

This is the part of my life that I'm terrified of, being reliant on other people for help with Activities of Daily Living (ADLs). Needing basic help with ADLs is incompatible with my other life activities like working full-time and practicing karate. It seems like if I'm able to do one, I should be able to do the others, but it's not always the case. Maybe I can work on that right here, right now:

It makes sense that I can sit and teach a class on some technology that I already know well, but can't get upstairs to heat my lunch. But to practice karate is hugely physical, so why is it so much easier?

1. In karate there's no equipment to drag out, or to wash and put away.
2. It's easy to dress for karate.
3. I get ample time to warm up.
4. The space is flat and I have immediate access to my medical supplies.
5. Almost everyone in my dojo is trained in first aid, and everyone knows about my EDS and Dysautonomia. Better still, they aren't afraid of it.
6. The dojo is a therapeutic environment which fulfills my need to interact socially.
7. I can take all the breaks I need.

That looks like a good list, and helps me understand why I'm able to drag myself to karate when I can't even bring myself to eat. ...Right?

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The picture attached to this post, which says, "Zebra Strong," refers to the mascot of Ehlers-Danlos Syndrome, the beautiful and exotic zebra. It's the mascot because there's an old medical school axiom that goes, "when you hear hoof beats, think horses, not zebras." It's teaching future doctors to think of the common things first. But the assertion with EDS is that "zebras exist," meaning that the exotic conditions must also be examined and screened.

I'm a strong zebra, and I'll get through this.

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.