He telleth the number of the stars;
He calleth them all by their names.
Have a great 4th of July :). I will see you next Tuesday!
Have a great 4th of July :). I will see you next Tuesday!
Remember how I said I was on an eating vacation? I probably need to buckle down and get back to work. I felt a severe eating deficit on Sunday at church and needed to literally lie down and be quiet for 45 minutes while Mom and Dad went to grab a salad and came back for me. Yes, stress is a contributing factor. Apparently I’m REALLY bad at this whole grieving thing. I prefer to pretend nothing’s happening, and my people are obliging me by playing along. But I know that denial can only work for so long. I think I might be reaching the extent of its (admittedly flawed) effectiveness.
I also chose poorly at breakfast at Sunday. Mommy asked me if I wanted an egg and I said, I probably should, but no thanks. Bad choice. And I can’t get away with suboptimal choices right now when it comes to food. So I will do better tomorrow. :)
This is Aunty Haigouhy making coffee for me in 2009. We went EVERYWHERE together after Uncle Joe died. Pharmacy, Supermarket, Doctor, Hospital – wherever. Fun Times were had by all. I was always amazed at how many people stopped to greet her warmly and chat while we were out and about. Everyone knew her and Uncle Joe bc Uncle Joe had a shoe repair shop in the neighborhood for many moons and it was a well loved institution.
When I came home from my internship (Intel Summer Camp ‘o8) I went straight to The Shop with a pot of orchids and the burning question – Should I move? This was when Uncle Joe famously told me that yes, I could move, but that I should be aware that no one was going to bring me a cup of water.
In later years, Aunty Haigouhy would say, I don’t know why you want move Oregon.
Me: But Uncle Joe SAID I could!!
Aunty H: I don’t remember that.
She was right there, I promise. But she feigned unawareness of this conversation, just like how she’d always feign memory loss when it came to putting on her seat belt in my car.
I always managed to show up at her house whenever we had errands to run around mealtime. I take that back. Time was somewhat irrelevant. I went straight to the fridge and perfected my pathetically hungry look over the years. It totally worked. I was always well fed and well cared for at Aunt Haigouhy’s house.
There are so many more stories I could tell you, but I’m going to refrain. I need to rest my arms so I can play at Aunty Haigouhy’s funeral.
Right before I started talking at the Christmas Tea I turned to Smurfette and was like, Hey, J – you ever done this sort of thing before? Cuz things are about to get a little craaazy…..
She told me it was cool – she knew the drill – so my no-holds-barred approach that day didn’t unnerve her. I spoke at a Brunch a couple Saturdays ago, where we welcomed some new friends into our family. I gave a brief update on my physical condition bc when I did the Christmas Tea, Trainer D had called me out the day before. Things have gotten so much better since then, and I have definitely reached another level physically.
I was gritting my teeth the whole time at Tea. I really wanted to set the record straight so I didn’t tell Mommy how poorly I was feeling bc I knew she’d make me lie down or something. I had to expend an inordinate amount of effort then. But this time at Brunch it was much smoother sailing. I am SO much healthier, thank the Lord.
After I consulted Smurfette initially, I counted calories for a couple of months, saw that I had been under-eating for a long time, and learned how to game the system within a couple of weeks so I wouldn’t get the Nastygram from My Fitness Pal. I also started drinking Ensure and felt so much better (Trainer D: DUH. [rolls eyes]). And then Trainer D proposed that I adopt Macro goals (%Protein, Carbs, and Fat). And so I did this “If it fits your macros” style of eating in addition to ramping my calorie goals up by 300-400 over another few months, during which I rediscovered the joys of the sandwich.
The results were good. I became more mindful of what my body was telling me – e.g. on days that I “run” and train I have to eat a Giant Breakfast. I know now that once I “feel” the deficit I’m in the danger zone. I used to fast weekly in my Old Life. When I started this practice (I researched it and talked to the Health Nurse at work, FYI) I hid my scale so it wouldn’t be about that. It was fabulous – it’s how I learned to use the body to engage other parts of you. But now I can’t muscle through – I feel my body shutting down if I am failing to fuel appropriately, and I feel an intense obligation to MommyDaddy et. al to not allow this to happen. So last week at the Running Gym I instated a mandatory snack time for myself at 10.30am (this left an appropriate block of time prior to the start of any activity) since I had not been able to eat enough that morning. Coach R played along while I chewed my Quest bar dutifully, but Trainer M declined to participate. I was going for the: If I have to suffer, we ALL have to suffer effect. Oh, well. You win some you lose some.
When I started eating more appropriately I was also able to “run” and train harder. This is where the rubber really hits the road. My core strength, balance, spatial awareness etc. are improving, slowly but surely. I can do more things and know the tricks to make my eyeballs last longer and to prioritize so I can exercise the mental acuity I need for certain activities. And as time passes, I am getting better at managing my deficits and surround myself with people and safeguards to help me recognize when I need to scale back my activities.
When Uncle Bus passed away I was extremely sad. I’m still sad. And I recognized that I have a LOT of older friends and this situation was just going to escalate. I informed my people that I would be a MESS when this happened.
Well, it happened. Aunty Haigouhy went home to be with the Lord last week. She was Uncle Joe’s wife. They were special to me.
Last Sunday we went to the hospital to see her one last time. I tried to press myself into the wall outside her door and just disappear. She was “asleep” but became agitated when she heard our voices. I hadn’t seen her in a long time because she had been moved into a home a while ago. Sigh. It’s been kinda rough.
I put myself on an eating vacation. I postponed an appointment with Smurfette, which confirmed Trainer D’s suspicion that my regimen had been derailed. I informed Coach R (technically, I email bombed him as is our custom), and then I tried to do “mindless eating” by watching a video of him training Ali Krieger (US Soccer) while I ate half of my barbacoa salad from lunch.
It was one of the funniest things I’ve ever seen. At one point he’s explaining how to move one’s arms – you know, athletically. I started giggling and haven’t stopped for four days. Poor Coach R. I know he’s very good at what he does and all, but seriously? How am I NOT supposed to laugh at this stuff? Truly, though – you should watch this video, esp if ACL injuries are a concern of yours.
But you know what? Even though things have gotten kind of craaazy bumpy I’m doing well right now. I was in excruciating pain when Dan Uncle passed away at the end of 2014. Over the last couple of months I’ve had similar stress, compounded by a medication-induced cough, and a harrowing trip to the ENT, but have not been in that kind of pain. Thank the Lord the cough cleared after 3 weeks and Coach R no longer has to carry my cough drops in his pocket. I’m still nauseous. Last week in the middle of a set with Trainer D I paused with my kettle bell mid-air and shifted my eyes from left to right and said simply, Trash can. (i.e. in case I throw up, where do I go?)
I did have some weirder head pain that made me nervous enough to get a full work up even though I’ve been assured nothing’s growing in there. The last time I got an MRI was in 2012. So I got a new one a few weeks ago and it came back clean (Yay!) so the pain was just stress-related. Surprise, surprise. It’s gotten better with time.
Notably ,my right side hurts as often as my left side now, or more. I guess it’s the cumulative effect of 4 years of guarding my left side’s weakness. But I know how to roll stuff out, and I’ve scaled back on my cane usage and typing/piano to save my arms (which is a new wrinkle, but we’re rolling with it). I routinely get out of my chair and squat to stretch my hips – it doesn’t matter if we’re at a fancy restaurant, or in some other context that’s weird – the point is that I know what I need to do. This is still a work in progress, but I don’t feel helpless anymore – like I just have to wait for things to happen.
The end result: My wellness level has shifted upwards.
Feel free to cheer rowdily at this point.
This is another indicator that all my Training + Treatment is working. Thank you, Team Tanimal!!
Originally posted December 2012
I’ve had a nice day of rest but I’m going to go back to Therapy tomorrow because lying in bed is booooring and I’d prefer pretending everything is like it used to be. FYI this is what things used to look like:
I love Kpop in that video but I have to say it makes me a little sad. Not weepy or anything, just wistful. Meanwhile, I’m going to make myself feel better by sharing this pic. I dare you not to laugh. Goodnight!
I took this photo a couple of weeks ago when the family came in and we went to lunch. Peter a.k.a. P2 sat with his beloved Grammo and practiced his pizza eating technique. He got really into it. I have never seen that boy eat so much. It was like he had never seen food before.
Although they had to work on holding the pizza cheese-side up, I had to give P2 points for enthusiasm. There have been times in my life when I’ve had to just close my eyes (figuratively, but not always) and take the plunge. That’s how a lot of my progress has happened.
You probably know by now that I’m all for the aggressive trying of things. But I am also not in a position to be taking unnecessary risks. But God’s presence in my situation allows me to balance the two. This is not blind faith. It’s living faith.
When I imagine a vacation I might visualize a beautiful bungalow on a secluded island, or afternoon tea being served in a flowery garden in the English countryside, but after ten seconds my mind starts working through the logistics and suddenly those scenes don’t seem as attractive to me anymore. My quality of life has improved dramatically over the past year+, for which I am extremely grateful, but this is because I am increasingly aware of my physical limits and prioritize activities that will mitigate their effects. This is why weekends and holidays (when “real life” happens more) can be so challenging for me because there are more variables to navigate. When I’m really tired I think, I would love not to worry about consequences:
But when all is said and done… I’m over it. The fact of the matter is that I DO enjoy a much higher quality of life than I did even a year ago, and it is also a much higher quality of life than what many others are used to. I don’t have all the answers, but I don’t need to. Don’t worry about tomorrow…
The Lord will perfect everything that concerns me.
Over a year ago while I was still at Boo Boo’s house Trainer D began threatening via email to make me Train outside. We only went outside once last year :), and I quite enjoyed it because the weather was nice and we had a neuro-PT gait training kind of day. I used to pray for rain while I was at The Place so Dr. A6 Frankenstein wouldn’t take me outside. Then I realized that rain didn’t really matter to him .
Now Trainer D and I have progressed to the point where we Train outside even though it’s blazing hot. Thankfully, it’s only happened once so far – but he stressed the importance of hydration, said I’d better get used to this bc it’s going to be a regular thing and then I snapped this pic for Smurfette’s benefit while Trainer D was digging around in his locker. He made me pull that red thing (“the sled”) around for an entire hour. My arms (with the messed up tendons) were hurting very badly after, but I could not deny that the addition of weight made me think more and more about where my body was in space, and where I was going to put my foot.
See? Method to the madness.
But really, it turned my thoughts to the One who orders my steps all the time.
Originally posted Feb 3, 2015
Yesterday I wrote about how my Trainers are setting the bar higher as I recover. Yes, I laugh because it is quite ridiculous sometimes and seeing the progression unfold “live” is hysterical for me even though I’m the one who has to do the running, jumping and squatting, but truth be told, I’m pleased. So are they. This is what they do, and the fact that I’m able to do more means they are achieving results in a context they haven’t dealt with before.
But to reiterate, the goal here is not to build muscle for muscle’s sake. More muscle protects my joints among other things. (Reminder: my joints don’t move in the way they were designed to but I keep using them however I can since I was given the opportunity to walk again.) I stand, sit, and speak differently. My carriage and breathing have changed, and I’ve realized that I need to work out a lot harder than the general population to maintain a very basic level of functionality, I.e. Just to feel “okay.”
What that means is that I train hard and I train often. Well, I have been trying to train hard. We’ve hit some major bumps in the road lately but things are looking up. Over the past several months I’ve settled for the “training often” half of the equation and we’ve focused on the pressing issues at hand – pain management, nutrition, injury (oops, my bad – I didn’t know I was making it worse), and dealing with stress.
But now we’re in a phase (I’ll enjoy it for as long as it lasts) where we’re not putting out fires, we’re chasing gains. This was where I was after Oregon and before I transitioned to the Full Disclosure Model with everyone. I felt fantastic in June and part of July. I don’t necessarily feel fantastic right now, but I feel vastly improved compared to a month ago. I’ll take what I can get :).
And the biggest change I noticed during that time at Boo Boo’s house (this was after I started “running” in earnest but before I came home) was that I had the stamina to arrange my thoughts and deliver them publicly in a way that pointed to the mental acuity that has always been there but that I’ve been too tired to put to good use.
The mind-body connection is becoming clearer for me. I can feel the difference in the way I write, prepare, and speak. This is a good thing, and is traceable to my overall physical improvement. This is the end game I’ve had in mind, and it’s why I transitioned to the Full Disclosure Model with my Trainers in the first place. I have very specific physical goals and they are prepared to help me achieve them – I just wanted them to understand the context I’m working in and why it’s so important to me. We’re not there yet, of course – we might never be – but we’re making progress.
Side note: It totally helps my stress levels that my Trainers are fun to be around. I laugh a lot and am getting top notch training in the meantime. Gen is a Complete Riot. I told her last week that we should just understand that even though she calls me crazy she is actually several notches above me on the crazy scale and operates on a level I can never hope to approach. But let’s face it – the craziest one of all has to be Ninja CMD.
It is encouraging to me that the Scriptures tell us to train hard. The language can often be quite martial…
“He trains my hands for battle | So that my arms can bend a bow of bronze…” Psalm 18.34
But in the next breath the Psalmist says, “Your gentleness makes me great.” Psalm 18.35
Paul talks about training like an Olympic athlete:
24 Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win. 25 Everyone who competes in the games exercises self-control in all things. They then do it to receive a perishable wreath, but we an imperishable. 26 Therefore I run in such a way, as not without aim; I box in such a way, as not beating the air; 27 but I discipline my body and make it my slave, so that, after I have preached to others, I myself will not be disqualified. – I Corinthians 9 (NASB – © Lockman Foundation)
And it is a great comfort to me, especially after I went to college and had to take Georgetown’s Freshman Intro to Theology classes, that we are encouraged not to operate from an imbalanced emotionalism, but to learn how to handle the Sword of the Spirit deftly. Thank the Lord that the Word is “living and powerful” and cuts to the heart on it’s own, often in spite of our attempts to wield it skillfully, but this is no reason not to try.
“Study to shew thyself approved unto God, a workman that needeth not to be ashamed, rightly dividing the word of truth.” 2 Timothy 2.15
Now that I’ve gotten sick I understand that what was a big deal in college was really child’s play. This is the major leagues now. And it’s clear that there is definitely a place for intellectual argument – a systematic defense of your faith via the judicious deployment of information. I earned respect from professors and peers bc I was willing and able to engage at that level. Your logic must be sound but I realized then and have found it to be true now that personal devotion to Christ puts an end to discussion.
Part of my New Life is that I love Mondays!! I usually have a Train + “Run” double-header. I see Trainer D, who plans accordingly, knowing that I’m going to use the AlterG right after I see him, and then I hang out with Coach R. I took this pic post “run” in front of my locker.
But I like weekends, too. It’s just that weekends are when “real life” happens more so I have to work harder to apply everything I’ve learned at Rehab/The Gyms in order to participate in things and actually enjoy them. It’s a work in progress, but we’re getting there.
Coach R: What are you guys doing for Father’s Day?
Me: We’re taking Daddy to lunch, and I’m not going to antagonize my father. He gets weekends off, anyway.
But you know, accidents happen.
Just kidding. I love you, Dad! This is one of my favorite posts. Before I knew I had PTSD I was just really uncomfortable especially around Christmas. At that time we went out to dinner with Ai Ai and Timmy and the kids, but I was on High Alert the whole time and spent the entire dinner 2 inches from Daddy’s elbow. He was seated on my right, which I do much better with, since I use my left eye’s input much less, so when he or anyone is close to me on the left I automatically feel threatened. Anyway, I peeled my chair away from my dad briefly a couple of times, but on those occasions I shoved it up against the wall so my back could lean against it and I could have a full view of the whole table. Our waiter was so nice he pretended not to notice. :)
In this post, Dad makes me feel better when I really needed it.
Originally posted in February 2015
One of my favorite posts ever is the one when I explain how naughty I was when I woke up and would say anything to delay my parents’ departure for the night. One time I was like, Daddy, tell me that thing again about ‘Emmanuel, God with us.’”
Heh heh. That’s right. I totally leveraged poor Daddy’s devotional thoughts as a stalling technique.
But I wasn’t always stalling. Sometimes I had honest questions or requests, like when I asked him to read Mark 4 to me.
I continued asking things when I came home and was trying to decide whether or not I could still believe the Gospel. For a while I thought of difficult theological questions and would ask Dad about them just to see what he’d say.
Side note: A friend pointed out to me recently that the fact that I have a Dad who is in a position to answer hard questions and, in fact, welcomes them, is something to be truly thankful for. And I am.
It was the non-theological questions that I stopped bringing to him. In the hospital when I was going through my “quiz” reality-testing phase I’d ask people all sorts of things about the logistics of the past month+ (when I had supposedly been asleep), things like, Hey, Mommy – what was in my fridge/cupboard? What kind of shower curtain do I have? Hmmmm?
So one day I said, Daddy, how did you get into my apartment?
Poor Tanpo looked immediately stressed out and said feebly, Mommy?
I saw his distress and was immediately like, Don’t worry, Daddy, never mind. And I subjected only Mommy to quiz time after that. I gave Daddy a hard time in other ways.
But one night in Vibra (the 2nd hospital) I didn’t ask any questions. But Daddy saw that I was scared so he pulled a chair up to my bedside and talked to me about Psalm 23. …Thy rod and thy staff – they comfort me…he quoted.
I had just begun to wake up and was terrified and uncomfortable. Dad told me, The shepherd’s rod and staff signify the Lord’s power and authority…Don’t be afraid, Sweetie.
That night I was so terribly cold but unable to use my voice to tell anyone and lacked the motor skills to find and click the call button for help. So I would just lie there in my bed and try to use the pillow that had been wedged under my weird left shoulder to try and get warm. But I wasn’t truly comfortable until I had a dream that I was snuggled up under a blanket knit with Psalm 23 on it.
As the weather has been so cold lately I have remembered this instinctive desire to curl up under my fluffy comforter and be warm. It’s also my instinct to retreat from the world as my Recovery becomes more and more public. But it’s too late for that – I chose this lifestyle with my eyes open, and I love it even though sometimes I still get scared. When I do, the Comforter, who brings all things to remembrance, assures me that His power and authority rule everything – so I’m going to be just fine.
But the Comforter, who is the Holy Ghost whom the Father will send in My name, He shall teach you all things and bring all things to your remembrance, whatsoever I have said unto you.
Have a great summer vacation!
The week after we progressed to the no-holding hands during step-ups incident this happened:
To: Coach R
Re: I decided 2 things.
I decided 2 things this morning
See you soon!
This brilliant idea struck me while I was ignoring my multiplying oatmeal and doing my hair. I do some of my best thinking while wielding my hair implements. But I put the iron down long enough to shoot this email off chop chop.
Later that morning during Stretchy Time:
Me: Are you ready for BMTCR Day? I’m punishing you for not holding my hand last week.
Coach R: But you were successful.
Me: Irrelevant. It’s the principle of the thing, R.
Soon after this exchange I had occasion to punish Trainer D, too. I pulled out all the stops. I emailed Smurfette, I hid in the elevator even though D hates it when I don’t take the stairs (I recruited a staffer to be my lookout – his job was to create a diversion in case D approached), and I purchased a special “treat” for him at the grocery store (the broccoli apple puree in the picture at the top.)
I forwarded the email string between me and Smurfette to Coach R as a cautionary tale. “Do not let this happen to you,” I said solemnly.
I saw Trainer D again at the end of the week. I left the banana that was actually rotten at home bc I was feeling magnanimous that day. I thought the one I included with the Broccoli was sufficiently brown. It turns out that man actually LIKES brown bananas. Grrr…. Plus his caloric needs are so great that he delights in whatever I bring him.
I have to ask him how the broccoli tasted. A couple days later, after I had been meaner than usual for a week and made a semi-public example of him, we reached an understanding and called it pax. Or to be more accurate, I decided to stop antagonizing him. We’ll see what the new week brings.
Update: I’m scheduling this on Monday. So far so good. But I can’t make any promises for the rest of the week.