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.

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.

Rookie mistake

In six days I will test for my 8th kyu belt, my orange belt.  This is the top of the beginner's level.  In nine months I have made it through the beginning levels.  I am on schedule with the rest of my class, and things will get more individualized from there.  But right now, I am right on the mark.  Through injury and illness, catastrophe, and exhaustion I have pushed through.  In better times I have stayed grounded and dedicated.  The next leg will be to solidify my knowledge of the basics, to really internalize the individualized advice people have given me, and to commit to an even more dedicated schedule.

When I got the email saying it was time to test it seemed like there must have been a mistake.  How could I be ready?  I have so many things to work through, so many questions.  Every class I fumble through hoping I don't pass out, or strangle myself on the strap of my IV bag!  The more I thought about it the more I realized that the point is that I keep working through them, and I will not stop.

 Of course, there's a catch: I still struggle to get used to my body's limits.  Most jarring are the limits that others put on me.  For example, the other day we practiced takedowns.  I learned how to adapt my body so that I could do this safely, and how to complete the application of the move.  But when it was time for me to learn what it feels like to hit the floor my partner did not want to do it, afraid that he would hurt me.  I begged, and he did it one time so I could see what it was like.  Not too bad, no worse than when I fall on my own out in the wild.  The floors are padded, too.

It's hard for other people to get used to my body's limits, too.  Every day I am faced with inquiries: You can't do that, can you?  How are you feeling, how is your pain level today on a scale of one to ten?  What hurts today?  Every day, all day, I am analyzed, psychoanalyzed, evaluated.  Then, my responses are evaluated, too.  Wow, you have such a great attitude about it!  Aw, I am so sorry, that sounds really awful.  I don't know how you keep such a positive attitude. These are the words of people trying to cope with my health, with their own mortality, and with their self-image in comparison to someone with major, chronic setbacks.

When someone is trying to take me down I want to know about it, be able to feel it, be ready for it, and know what to do about it.  I can only learn that if I go through it while my body learns how to handle it.  The first learning I have to do is how to interpret other people's apprehension as compassion.  Next, I need to learn how to advocate for myself, to explain that this is my choice, my decision. Then, I need to choose wisely; I know that those teaching me are looking out for me, they know a lot more than I do about what can happen, and they have been through traumatic events of their own throughout their time in the dojo as in life.  Finally, I need to try it, and if I cannot safely manage it, I need to adapt it--not just avoid it.

Rafael reminded me in his own beautiful way that I really need to be careful with my body, that we all do.  He suggested that I do something else if I know I have a high risk of injury practicing mawashi geri (roundhouse kick), because I should use the strongest parts of myself to fight.  He's right, but I still want to also be able to do mawashi geri to the best of my ability, which just takes some troubleshooting.  Planting one leg firmly on the floor, he demonstrated a bunch of rapid-succession moves without moving that one leg.

Rule #1 of disability life is to focus not on what you can't do, but on what you can do.

It's great that I have broken through so many physical and mental boundaries in karate, doing all kinds of things I couldn't do before!  But, I need to also take inventory of what I /can/ do. As I strive to break through barriers of all kinds I also need to keep up the wellness of the faculties and capabilities that are already a part of my life, because I have worked hard for those as well.

It's a rookie mistake in the disabilities world to fall away from what we are capable of.  Oops!  Back on track I go, thanks to Rafael and my remarkably devoted Sensei.

The truth is, I am ready to be tested.  I will not perform perfectly, but I will do my absolute best.  And if I fail, I will do it again until I succeed.

Everybody Gets Wedgies In Karate.

Let's all just own up to it now: we all get wedgies in class.

Tonight was an awesome night! I have new nausea meds and was able to really work out without fear that I would upchuck on the dojo floor. My worst nightmare is throwing up on the beautiful floor and then passing out in the puddle of sick.

We worked on bunkai and staying on top of an opponent.  I went bonkers on my partner and she gave me great feedback! I need to keep my hands up to protect my face. Something tells me I'm not going to learn that until I have a busted jaw for the first time, but we all watch out for each other. I need more practice and will have that problem fixed before I am allowed in the position where such would be a danger. That's what I love about karate: the better you learn, the more you get to learn.

The hardest challenge for me today was my footwork. I worked intently on keeping my posture and feet where they need to be.

When the class began I was still taking care of my port and meds so I warmed up in the back corner. It's where I stood when I was new, so I got nostalgic. Sensei gave us a lot of good energy to work with, plenty to laugh and smile about, as well as meaningful instruction. He demonstrated at full speed and power, which always scares me. It brings up memories of my dad coming at me, but the dojo is where we are safe, and those feelings are gone right away because Sensei always makes eye contact to make sure the person he is demonstrating with is okay. Cool, I'm so glad to be able to face that and move right on with my practice. It's true, what Higaonna-Sensei says, our greatest opponents are really ourselves. 

What makes me feel the bravest about my own situation is that my Sensei is open about who he is and where he comes from. He teaches us lessons based on his own experiences. I know that I will have my own scrapes and bruises along the way to contend with, but when I am his age I will have seen an example of how to share with others what I have learned, which will make it meaningful.

I <3 my dojo.

Things Can Turn Around

I have been sick and nauseous, weak and hurting for days, but haven't been able to really eat since my wife left me two months ago, save for a meal here and there. I've lost 25lbs and feel like dirt, violently nauseous all the time, fighting muscle spams and weakness.  While trying to keep myself positive on the outside I have been awfully dreary on the inside.

Some people eat more when they are under stress and some people stop eating. Friends and professionals helped me navigate what of this illness was sadness and stress, and what of it was physiological.

Last Saturday I couldn't stay conscious in karate. I lost it after the first overheating episode and never fully recovered. How embarrassed and disheartened I was when I needed help to get to the bench. It took an hour or so to recover, but I walked out on my own two wobbly legs.

Monday was wild, a long workday followed by two fairly big medical appointments. I got to karate an hour and a half early, thinking, this is great! Time for a nap! Well, I woke up halfway through class. Whoops.

Not to miss out, I went in and took a seat on the bench. From the bench I can see a lot more than what I get to observe while working out. I am less preoccupied with staying conscious and I don't have to worry so much about not dislocating. I can just watch and learn. It's no fun being on the bench, but it is still karate time, still time for training, learning, thinking.

The low energy issue has gotten critical. I couldn't keep anything down and desperately needed energy. Tonight I finally got a proper medicine for the nausea I have been experiencing. Cautiously I ate a half of a peach and when that stayed down I went for a slice of pizza. Success! After two months I can finally eat a little bit!

You never know when the tables will turn.

Kiai!

Fighting for my Life

At this time last year, and for the last three years, I spent most of the day unconscious or asleep, in shock from IV needle sticks, tethered to an IV pole, nauseous, weak, miserable. Two Thursdays ago, however, I competed in my first shiai (tournament)! Then Saturday was Spirit Training followed by a pool party. I made it through all of last week's events. Why? I'll tell you why: my port.

One manifestation of Ehlers-Danlos Syndrome for me is that I cannot regulate my body temperature internally. No matter how much water I drink I can't stay cool. My body does not understand that my blood pressure needs to stay high enough to keep me conscious. When I get hot and lose a lot of fluid to sweat, I can't then tell my body to stop sweating. It just keeps doing its sweaty little thing until I'm all out of water, or I get to an ice pack, or an ice cold shower. And even then it is hard to stay conscious.  Why does this happen? There are a million different theories and I won't bother with all that tonight, but the bottom line is that there is no known cure because the cause is still not exactly known.

I tried living on high sodium diets, Pedialyte, gatorade, salt water, olives, pink salt, all kinds of trials and experiments. Life with EDS is one big science project.

For the past three years I have gone to nursing appointments several times a week for up to nine hours a day for intravenous hydration. But my skin is very lax, my veins roll or blow, I bruise easily, and the pain is so severe that I go into shock when they tried to stick me.  "You need a port," said my doctor, "it's the merciful thing to do."

Going into shock several times a week is tough on the body. They would encase my arm and my head in ice to try to reduce the autonomic response from my brain that said, "somebody stuck a needle in us-go crazy!" They used pediatric needles. Pediatric nurses. Doctors. Sedation. Local anaesthesia. Ethyl chloride. Anything to interrupt the shock. The pain was so uncontrollable that I would often end up begging them to stop, that I couldn't tolerate anymore, knowing that without  fluids I would not likely survive. I'm glad they never obliged me, except for long enough to collect myself and recover from the exhaustion of the shock. It was traumatic even though my doctor and nurses were with me every step of the way. They cried with me, not knowing how to help.

June 28 of 2012 was my "emergency vascular intervention" surgery to place the port. I was awake for it, though kept comfortable. The surgeon and I chatted the whole time and surgery was a breeze. I didn't even go into shock that morning when they put the IV line in me! It was a great victory and I got graham crackers out of it.

Next, my entire chest and neck hurt. I could not sit up for two months without holding my chest in place with my hands. Lots of ice packs. Lots of hyperventilating from the pain of my chest rising and falling with each breath. Exhaustion from shallow breathing. But once I recovered it was smooth sailing and it's been that way ever since.

On June 29th my nurse accessed my port and I was cool as a cucumber. No shock! Two litres of saline later I was conscious and even comfortable! I asked her how she accessed my port so easily and she told me. She has her third port. Stage 4 breast cancer. This woman looked over me while I was so sick, cared for me day in and out like I was her baby doll.  She is a permanent part of who I am and I love her.

Think about it: that was my life most days of the week. The other days were reserved for trying to stay as cool and still as possible so as not to undo the hydration from the day before. My quality of life was at absolute zero.

Since getting my port I have been able to exercise. Karate is an incredible adventure that I never could have seen coming a year ago!