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.

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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.