Tuesday, August 27, 2013

Tough Call

I can't decide whether to let my hip heal or go to karate tomorrow. Maybe I can kinesiotape my hands and work on my crutches. Decisions, decisions.

When I miss karate I really *miss* karate. To miss karate because of pain or dislocated joints sends me into a tailspin. On one hand I hear my PT begging me to rest. On the other hand I am terrified of muscle atrophy. The muscle spams are already  intolerable. The uncontrollable cry of pain is the embarrassment, not the pain itself. The pain itself just sucks.

The correct answer is just to go and to try my best.

Saturday, August 24, 2013

Day by Day, Como Se Pueda

The worst thing a karateka can do is not practice every day. Just something. Anything. Such was not in the cards for me this week. I spent the week in bed, my only activities centered around getting a little bit of time in at the office and putting myself around compassionate friends to help me cope worth the pain and sick. 

The hardest thing at my sickest times is getting healthy meals in. When I'm feeling well I am able to cook, prepare meals, shop for groceries, and best of all, chew. When I am sick my jaw dislocates, I choke on nothing, don't have hands to feed myself, and you can forget about digestion.

This thing about pursuing an athletic adventure such as karate is that you cannot out-exercise a bad diet. When I get sick I want to eat even more healthy than I usually do (which isn't as healthy as I'd like but isn't far off) so that I can hurry up and get back to the dojo! I want to get back to kicking and punching, participating in every way that I can. But I have yet to beat this challenge.

Sensei would know better than I, but I think that even though I need a lot of adaptations I'm pretty close to everybody else's movements. But when I'm sick for a week like this my body becomes incredibly weak and unstable. It will probably take me a month to get back up to par but I don't even feel better yet. I just forced myself to come to karate this morning because I needed it.

I have come to need karate as a vital part of my existence, part of my identity and self-worth. My whole heart is in it, and when I'm laying alone on the couch I just wish I were practicing karate. But sometimes the pain is so severe that I really cannot make an honest movement without crying out. When that happens I feel really pathetic. Part of this is a conditioned response where, when I was sick as a child my family would tell me to shut up or they would give me something to cry about. The other part is just that I am so strong willed that I become surprised when I can't will myself to ignore the pain and do the physical work that I know is going to keep my body moving successfully.

I really need to figure out methods for getting healthy nutrition when I'm sick and keeping my body somehow active. I worked really hard during the week to learn pain management mindfulness techniques and keep my attitude up. 

Despite my efforts my feelings caught up to me about my wife's desertion. She used to help me through these times and I felt comforted. Now those memories are torture on top of the existing pain, nurturing and whole moments soured by the weakness of a bond she promised me forever. Lately my mind has been so distraught that I haven't been able to focus or produce like I normally do. Couple that with being sick and I naturally long for stability, support and structure, which karate offers.

My Sensei and Senpai are dear, lending encouragement and leadership so I don't get soft when I'm sick. If I can just get to the dojo I will be held to the standards of doing my absolute best, trying everything, and adapting what I cannot safely do.  Today I dislocated my hip while we were kicking and it would not go back in place. I'm actually writing this in the parking lot of the dojo because I don't trust myself to drive until the swelling goes down. A fellow karateka ran out to my car and got my crutches for me so I could get out of the dojo, and it felt very good that I could ask for help. It doesn't feel good to need to ask for help, such is a universal sensation. But it feels good to know that when I need to, I can. I made a joke on my way out the door, that if anybody asks, I made it all the way through class.

It doesn't take much for a body with Ehlers-Danlos syndrome to lose its conditioning. Muscle hypotonia being a primary contender, the spams and laxity were rampant today. Pair that up with the side effects of medication and I have no idea how to cope with my condition. The easy answer is that I can't, and that's why I have a strong support network.

I desperately need to get back to physiotherapy. I had to stop attending when my wife left because of the cost. When I was lying on the couch all week I knew that I was doing myself a disservice by being still, and I just prayed that somehow I would be able to get back to physiotherapy. I really needed someone to help me get moving, and there is nobody now. The way my wife left was abrupt, & I haven't had the chops or the energy to get the support in place that I need in order to live. I'm in a terrible way and if I could just manage the physical pain I think it would help my quality of life significantly. For example, I haven't done laundry in two weeks. You can forget about mowing the lawn. The last time I took a bona fide walk was about a month ago. Its not that I haven't found a million ways to adapt these processes, but when I'm doing it all alone I just cannot apply all those adaptations to all of those functions. They're hard enough for someone able bodied to complete independently.

How do I break the cycle? That has yet to be determined. But for now I'm going back to bed until I feel well enough to hazard a shower.

EDS sucks. No two ways about it.  Karate rocks. More than being the best defense I've found against giving up, it actually raises the bar by giving me an internal reason to face hellacious physical challenges.

I'm glad to be welcome here at the dojo. There is a magical aspect to this place, which reveals itself in its willingness to work with all kinds of people from all walks of life. Knowing I can never repay my Sensei for his generosity and support I am just doing my best and trying to let the pain go through me so I can get right back to the love and excitement of practice.

I use dictation to write these blogs. The number of times my jaw has dislocated is above five. It's time to stop. Be well.

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.
-Megumi no Bushido Dojokun

Saturday, August 17, 2013

It Must Be Different

I never regret getting up early on Saturday and going to karate.

They have really been a help to me for getting started in karate, but now that I'm in a little bit better shape, and weather is cooler, I've been trying to practice without fluids running during class. I made it once last week and almost made it through today, too. It's nice to feel the freedom of not having my heart tethered to a plastic line and a heavy bag while trying to swing at people. It's just a lot to manage, although it's so wonderful to have fluids that allow me to do things like karate that I'm pretty sure I could cope with it if I never got off of them. It wouldn't be easy, and maybe someday that won't be the case, but right now I'm doing well.

Finally, thanks to a wonderfully dedicated doctor, I have gotten the chronic micro-barfing under control. At karate, when karateka partner up and practice karate in close proximity to one another I become very self conscious because I constantly taste puke.  I don't know if my dragon breath counts as a qualified karate move but I'm sure it could take out someone much larger than I am. I even eat breakfast before class now, which is giving me another positive edge.

Here at the ten-month mark I feel stronger and more sure of my movements, feeling less like I'm going to pass out or vomit, or both, if I dare to try a new move or to go beyond the basic positions. I think everybody goes through this on some level, but for me it has an amplified level of anxiety because throwing up and passing out were such daily occurrences for so long.

If I threw up in class I would be mortified. I know I would be forgiven and I might even get help cleaning it up, but the real embarrassment would be to my own sense of self, my inability to control a vital reflex. That's the crazy thinking though, which needs to be untwisted, because reflexes are not something that we consciously manage. We can use mindfulness and relaxation to take us so far, but the truth is that if the body needs to eliminate, thats what it's going to do.

Having an orange belt puts me at the top of the beginners class. Almost all of the people who have supported me have moved on to the higher levels, and now I see lower level belts going through their own struggles and discoveries. Everybody at the dojo was so sensitive to what I was struggling with, and still is, but I feel that as I observe the new our students than myself I am somehow either less sensitive to them and their challenges, or that I am erroneously comparing my challenges to theirs, looking to feel like I'm not alone, and not really finding that. We all have our challenges to face, and for some reason, though I recognize that my challenges are no less severe than anyone elses, they are comparatively more rare, which gives me a feeling of loneliness. It's difficult to relate to healthy people and their challenges, even though they're not as healthy as they appear to me, but simply healthier than I am.

Using the word healthy in this context, I mean able-bodied. Everybody has aches and pains, especially at eight o'clock in the morning; undoubtedly a fair amount of psychache passes through us all, which may be our most common element in terms of resilience. But the average person does not appear to be concerned about whether their joints will dislocate;  whether their skin with tear open and never heal; whether drinking plenty of water will not be enough to keep them sustained and conscious; whether the air temperature in the room means they should modify every move, making sure that they don't overheat; whether they would have to go around people and weather there would be enough time to go out before leaving to throw up, and so on.

Karate is the best thing I have ever done for myself, and the instruction of karate is one of the greatest gifts anyone has ever given me. Is the gift of physiology, time, space, safety, and instruction, to learn about this beautiful and complex organism in which I live. This is true for all of us who practice karate and face our limits, so maybe it's not that different after all: the experiences are different but the feelings are the same.

Monday, August 12, 2013

Dreams, Grief, Love, Relief

Because of my hearing I stand front-and-center at the dojo, so I'm right in front of the mirror. A lot more of my body moves than anybody else's does. My skin flies right off of me and it grosses me out. Thanks, Classical EDS. But that doesn't stop me, and I hope your body issues don't stop you from following your dreams, either.

Lately I have been really tormented by my grief for my wife as we go through separation proceedings. I can't sleep, my work and chores are suffering,everything I do has an undertone of pain and confusion. I'm lucky that my sensei has walked beside me through this. At the very least I get to kick and punch until I am raining sweat.

This morning I wrote to him, worried that I have been hiding from my pain at the dojo. He suggested I see it as doing something constructive until I can handle the pain. It makes sense to see it that way, and keeps karate a positive thing I'm doing. I'm lucky to have it, too.

It was over a salad bar that I met my Sensei and asked if he would be my teacher. As I reflected on that today I brought him a salad, just because I am thankful. He surely understands by now what an impact he has had on my life, but it will be years before I am so great that I change entire lives just by doing what I love. First of all, it will take finding out what I love. Above all else at this time in my life, I love karate.

Monday, August 5, 2013

Achievement Unlocked: 8th Kyu Orange Belt

This test was far more challenging than anything else I have ever done in the dojo. I spent an entire week before the test preparing to be pushed well beyond my limits both physically and mentally. Boy, was it hard!

The test was on a Saturday. This Saturday on with my test fell happened to be a Spirit Training day. Spirit Training is a two hour session where you train and practice so hard that the only thing you have left to carry you out of the dojo is your spirit. Part of testing for a belt involves the depth and commitment of your spirit to progress; as such, my excitement and stress were through the roof because there is nothing more fulfilling for my spirit than to put my absolute best effort into karate. However, that stress is something I have to keep carefully in check because I have a body that does not always agree with the interests of its resident mind. Such is the hardest obstacle for me, but it was never an unknown obstacle and I have developed many strategies for managing the disparity.

The class ran over by a half hour for a total of two and a half hours of training in a room that certainly felt like it was over 80 degrees. 65 degrees is the cutoff point for my ability to keep conscious without medical intervention. But there's certain days when I'm just not willing to entertain the idea of staying home, and so far this test presented the most physically demanding challenge of my entire life. I wasn't going to miss it! I spent a lot of time that morning getting hydrated and medicated properly, doing proper physiotherapy to warm up, applying analgesia where necessary, and in prayer.
I have had a very difficult time staying conscious in my previous test environments and they're only getting more complicated, so I needed to set myself up for success. And you know what? It worked! I had to take three hydration and homeostasis breaks during which I was terrified that I would not be able to continue. I am fairly certain that my sensei was perfectly aware of my fear, because he delivered a great deal of coaching to help everybody put their best foot forward. Because I also teach, albeit in another subject, I understand that it can be very draining to constantly have to coach and cajole one's students through a rigorous day, but to my surprise it was absolutely what got me through the program successfully. I'm not exactly sure what it was, but I think it had something to do with not feeling invisible just because I got sick and had to step out. The fact that he was aware of my care strategy and insisted on full inclusion anyway really gave me the gumption to continue on, holding myself to the same standards as everyone else , standards that are primarily grounded in surpassing one's own progress and defeating setbacks at least for the moment.

I did indeed manage to stay conscious for the majority of this training, and only had to fully stop one time to recover my blood pressure and visual field. I was conscious at the end of the class and received my belt with a gigantic grin on my face. I have never been so proud of myself, and I have never loved a physical trainer as much as I love my physiotherapist, because no one has ever been strong and sensitive enough to help me get the same results as everybody else gets, in a way that works for me, no matter what.

I worked so hard for this, and others worked with me through it. The combination of those two efforts is where the Spirit comes from . I assure you, it's really all you need to have left by the end of Spirit Training.

The very next day I spiked a 102 temperature and couldn't move a single muscle in my body, a condition with many other complications which lasted for several days. As I lay in bed I ponder the words my physiotherapist said to me, that I should make my memories now, because when I'm laying in that bed I will want to have the memories to keep me company. After such a fine accomplishment as my orange belt, my subsequent illness proved him right. If I'm not particularly trying for anything when I'm well, I really just feel wasted when I am unwell. Karate helps me keep focused on the life part of being alive, and not the sick part.

Tonight was my first night back in the dojo after a full week and I felt a great deal of heartache when I saw my fellow students because I had really missed them, ached for them, wondered how they were doing, wondered if they wondered how I was doing. Imagine how warm my heart became when every single instance of eye contact I made with anyone else in the dojo crept up to my arching eyebrows as the corners of my lips turned upward and I felt that curiously wonderful feeling that I get when I seem to be smiling with my entire body.

Every good feeling I experience in the dojo is so genuine and real that its almost hard to cope with the reality of kindness, wellness, and love. But there it is, and that's what it is, and thank goodness it isn't going anywhere.

I'm pumped.

Six of every 168 hours of my life are spent in the dojo during the week. I thank my lucky stars for those six hours where I feel more powerful than my pain and nausea.

Today is a rest day. It's been hard to stay conscious. Such a problem is rare these days because I am one of the lucky people who has insurance and access to better medical care than I have ever had in my life. Even though those three years of struggling the memories catch me off-guard and get me fired up all over again.

Tomorrow is my 8th-kyu test day! I'm pumped! Literally, I've been pumping IV fluids and drinking water all day.  I would really like to be conscious for this one.