Thursday, March 15, 2018
Saturday, March 10, 2018
Meanwhile, they continue to develop the maturity and awareness that it takes to have the character of a black belt. Their classmates look up to them as role models for technique and character. Their Senpai (senior karate practitioners) depend on their energy and generational commonality to motivate the adults and to connect with the younger students, respectively. In my humble opinion, too young is not an issue with the trainee, but with the trainer.
Even the Bible tells us that youth is not a barrier (I Tim 4:12*). As the youngest of three I was often excluded from activities because I was too young. It has forever isolated me from my cousins, who are all at least ten years older than I am, which I deeply regret. I missed out on a lot, and I never quite managed to pick up the pace and catch up to wherever I suppose I could have been by now. I've had to learn to let that go, and to manage my pace, because Ehlers-Danlos Syndrome does not allow for controlled burns of energy without at least double the recovery time of an average person. Any less recovery time bears consequences, like depleted energy stores, internal organ dysfunction, or increased dislocations due to fatigue and physical stress on the connective tissues.
It will surprise me if I ever see myself able to pace myself--my body's abilities and limits are moving targets. All I can do is push for early opportunities and early interventions. This does not mean that one should place a child under tremendous pressure to perform a task, whether it's karate, piano, maths, or anything they don't want to do. Encouraging and giving support are okay. Force is not okay. I don't know that "too young" is a thing. Too old isn't a thing in our school. Too disabled isn't a thing in our school. We work with what God gives us.
Thank you for joining me here in my blog today.
*1 Timothy 4:12 King James Version (KJV) 12 Let no man despise thy youth; but be thou an example of the believers, in word, in conversation, in charity, in spirit, in faith, in purity.
Monday, February 19, 2018
Similarly to how Inuit (a subset of Eskimo) has ten different words for snow, I've always relied on my enormous vocabulary to communicate with acute precision, because the English lexicon allows me to do that. It gets in the way of everyday conversation in two particular ways:
1. Nobody can understand me, or they tune out.
2. People take offense and think I'm posturing, and then condescending when I clarify.
To get around this, I think in Spanish or Japanese, because my vocabulary is a seedling to the mighty oak of my English command. The problems with this are that I then have to translate back to English, which I can't always do on the fly, or, that a metaphor or cultural reference doesn't make sense across the translation.
To get around that, I shut up. And while this may be my best method when the topic is inconsequential, it's the death of my own voice for that interaction.
My Sensei recently taught me that, if I want to be heard, I need to listen.
Being told to "listen" has always hurt like a punch to the face. Having been unilaterally deaf all my life, and never having had support for it during my developmental years, I still miss out on a LOT of information that is delivered as auditory exchange.
I've adapted like a lion to fill in for some unknown percentage of teachers' lectures, instructions, and incidental learning. I made myself strong in phonics and the faces people make when I'm speech reading. I became a polyglot to understand accents and grammatical sentence structures, which helped me understand my Italian-American family better. I learned sign language.
Deafness has a lot to do with my attraction to books because I can read a page any number of times, take notes, and review. I can check my work against written instructions, and hand my work to someone else in a non-verbal exchange.
When I am asked to "listen," I have to take a breath because I can feel my body freezing up. I ask myself, "is this person asking me to hear them, to stop interrupting them, or to agree with them?" This has been a good practice overall, but in a discourse it's not a good time to not be able to hear. I have the lower hand and it will often cost me the row.
When you have anything more than mild hearing loss, you can't interpret auditory information in real time while also:
considering the point that has been made to you;
formulating an opinion;
forming an argument to support your opinion
forming and delivering the verbal response, and
getting ready to hear the beginning of the next exchange.
Communication is hard. I've long since taken responsibility for that little sting when I'm asked to "listen." I know it's there, I know why it's there, and it's one of yesterday's feelings that needs care, but is not related to the conversation at hand. I came to this point only after I finally had the hearing supports I needed and learned my own strength.
To listen does not mean to accept as fact, to internalize, or to otherwise acquiesce. It just means to let the other person speak. I am still working on not interrupting, because I don't like being interrupted. But with hearing loss I have to simultaneously work on auditory memory because I can't always stop to take notes (e.g., in karate).
So if you have anything you want to tell me, write it down. ;) Ha!
There are MMA fighters who scream and carry on to intimidate their opponents and to rile up the crowds. Other fighters say nothing and stay focused. Who's to say which is right? Neither carrying on nor staying silent indicates a winner. But, in the words of Audre Lorde, "Your silence will not protect you."
This blog post didn't end up as cohesive as I'd like, but I hope it's given you some thoughts about what it means to listen, and what it means to speak up. Both are important, especially in the case of those who cannot speak for themselves, or who are not heard.
Tuesday, January 23, 2018
Physiotherapy (PT) has its methods. It takes time and commitment. It takes energy and resources. It's for a better overall sense of being. In that sense it is just like karate-do, another way of being. It's hard to walk both paths at once because my energy is limited, so I've been foregoing karate in order to repair my body at PT with that much more focus and efficacy. When I pushed myself to do both I felt like I was working against myself because I was too sore and exhausted, and I was getting weaker from doing too much. (I do not enjoy admitting this.)
After physiotherapy today I had to sit in the parking lot to collect my emotions. My physical therapist is so knowledgeable, so humble, and so unafraid to try to help, that I get overwhelmed by finally having a place to go where I can get relief. (I get even a little more overwhelmed to think of how few EDSers get this far.)
Thanks to my PT's help, I take less medicine for pain. I am getting through more of a day without needing a major rest period. I'm not throwing up every five minutes. I'm passing out less often, and less severely. I'm able to hold my own head up without a brace more often.
Regular access to competent physiotherapy is helping me get ahead of my pain. He not only helps me understand what's happening, but he challenges me to think through why it is happening. Then, he gives me options for what to do about it, and I am 100% included in my own care plan.
My PT meets me where I am in managing my symptoms. By that, I mean that he genuinely listens to my confusion and frustration, which gives me space to work through the emotions that need care on the way back to logic. It's a holistic approach, invaluable to a "PT lifer" like me.
I look forward to physiotherapy because it's where I go to get better. Today I was anxious because I knew I was going to be able to make it, but I didn't know how much I was going to be able to do since I had been dealing with POTS all morning. I had a "painsplosion" last night, too, which was not helpful. What I did know was that I would be okay, and that I would be in less pain after. I would not be judged as weak and I would not be ridiculed for using dramatic terms to describe my pain because it's so complex a feeling to convey. I knew there would be things to laugh about and that I would have some serious work to sink my teeth into.
I like working with my PT because he is a natural teacher like I am. He lifts up everyone around him because he is constantly educating. Patient education is essential to long-term results. I leave with lots of ideas to look up each week. I wish I could stay and take more notes during or after sessions, but I really need to focus on my body so I can get back to karate. That means I don't get to spend as much time in my head as I'd like, to process it all. With hearing loss it takes extra time to commit verbal exchanges to memory.
Physiotherapy has been a long road for the last several months. It's taken effort, tears, trust, time, and patience. Not once have I left there feeling like I haven't raised the bar; I am always a little better off than I was when I went in, regardless of where I was when we began our work.
Because I'm able to get this care, in able to stay employed. I'm able to earn a living wage, pay my bills, contribute to the economy, and even make a few modest donations here and there. Ehlers-Danlos Syndrome costs a fortune to manage, even with Employed Individuals with Disabilities Medicaid buy-in to cover my insurance copays. A significant portion of my wages goes into my care. But at least I'm getting adequate care now, which is especially true with having found a qualified and competent provider.
Last year was a rough year for my health. This year I'm going to keep working on improving myself. I will work to remember that I can only do one thing at a time, and I will try not to work against myself.
I'm so grateful that the trend is upward that my eyes are leaking. You could fill a city with the number of people who are a part of my progress. If we could measure compassion in raindrops I'd need an ark!
The foci of our work this time around in PT has been on shoulder stabilization, stabilizing and integrating the paraspinals, improving vestibular resilience, resisting syncope and recovering sooner, and a few other odds and ends.
I am so eager to get back to karate, I must think about it at least 20 hours a day. But I don't want to overdo it and end up injured again because I'm working hard on PT to come back from a really harsh year. Every day that I don't go to karate I have to resist kicking myself. But I'm trying to be patient with myself because I still study and I still practice at home, which has value. My dojo always welcomes me to try everything I think I can do. But I think I'm doing the right thing to let myself recover. It's so hard to not go.
I'm so very grateful. How I wish I could give this experience to others who desperately need better care and better results. Maybe by writing it up, others will know what to expect, and they will know to aim for a higher level of care.
Thursday, January 11, 2018
I was wrong and I've learned. We can't fix everything we break, but we can almost always take steps to set things right. Trying is always the right thing to do.
A few days ago I vented my frustration on social media:
"Another nurse today who had no idea what EDS was. At least she listened to me about the blood draw and didn't collapse my catheter. I missed my Physiotherapy appointment because it took too long to explain EDS to this nurse. Frustrated. Tired, too. I have to go to OT in a few minutes, but I'm exhausted. EDS Sucks."
She was one in a long line of nurses. I was frustrated because of all the trouble, and you can easily smell the stink of my depleted heart, stinking up my normally more humble attitude.
After venting to my friends, getting support from my sweetheart, reflecting on my experiences, and praying about it, I see now that because I had been worn down I did not have an "attitude of gratitude," which we practice in karate, especially with the kids.
I wish to be an example, someone good to whom they can always talk. That means I need to go back and do the right thing. My love for the children in our school runs unnaturally deep, especially because I haven't even been able to support the children's classes for a fortnight! Our children's instructor is a monument of faith, and I know they are in good hands. Sensei is always reminding the adults that our school is first and foremost dedicated to our youth. He reminds us that the most important thing we can do is set an example by constantly developing our character. (He's clearly made his point in my mind--ha!) When those kids even know who I am it puts me over the moon with joy. They're all great kids. We are a school focused on discipline, strength, and humility, and those are big words, even for adults to aspire to, so it's good to lead by example.
Back to the nurse: I did not give genuine thanks that she stayed so long, that she persisted until she got it, she was compassionate and genuinely sorry that she didn't know what to do, and she ultimately got the job done. On top of that, she heard my frustration and tried to comfort me from a kind place in her heart.
I was wrong. I value nurses so highly! I could have done better. I thanked her and told her that her job is very important, that I didn't blame her for not knowing EDS, that it wasn't her fault for being assigned to me, and that she did accomplish what she had come to do, which was very hard for me to get done. But my heart wasn't in my thanks the in way I'm accustomed to giving thanks.
Today I will contact her to tell her some shorter version of this, and to extend my thanks again, this time with an attitude of gratitude.
That's how I'll practice my karate today. God willing, I'll practice more in the dojo tonight!
Thank you for reading. If you have been a part of this EDS adventure, thank you for joining me in it.