96. Pardon

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If I tripped at The Place and needed rescuing I used to say, “Pardon.” You know, like “excuse me” – it was just reflex, but apparently it was funny because other patients don’t say that when they bump into their PT or almost fall on them. I got it from my cousin JE. She was born and raised in Malaysia and I think I adopted some of her verbal traits, or at least that one, when she stayed with us for a while when she moved to the States for school.

My children are used to my own patterns of speech, e.g. if I say I’m going to powder my nose, they know I really mean I’m going to the restroom. I think I got this phrase from Tanpo – isn’t that funny? But the phrase, “Pardon,” is more opaque for them. Since I’ve had hearing loss, I often don’t hear what Ezra says to me, so I say, “Pardon?” “It’s not ‘pardon,’” he responds, and then he repeats whatever he said. I’ve tried to explain the word to him, but he doesn’t really care at the moment.

Years and years ago, around the time of the “considerate” conversation, Hannah asked me, “What’s ‘pardon’ like?” I told her it is another way to say “Excuse me.” “Oh,” she said, comprehendingly, “In my family we just say, ‘What?’” I couldn’t argue with that so we just carried on with whatever we were doing.

I had a chance to use Hannah’s turn of phrase at my last evaluation with PT37. Not only has Leo (the cane) been banished from the gym, but PT37 has added all sorts of fun tests to the roster so I keep on progressing in the direction of normal walking. The picture above is the list of things you’re supposed to do. If you’re having trouble zooming in on your computer I’ll just tell you it includes regular walking, hopping on one foot (!), skipping (!!), and some other stuff I’ve blocked out. I know what hopping on one foot looks like (I wasn’t able to replicate it very well, but I didn’t fall down), but I needed a reminder about what skipping is supposed to look like. When I asked, What’s skipping like?, PT37 obligingly demonstrated by skipping down the hall. At least one passer-by laughed at her. Thanks,PT37! FYI, skipping is kind of a step-hop motion, and you’re supposed to switch between legs as they lead you forward. I got about 3 skips in (with PT37 holding my hand and gait belt), before I had to stop due to my (left) leg protesting and my prohibitive giggling, but a nice lady (the family member of a patient) cheered for me as I ended my skipping adventure.

I haven’t skipped since I got sick. I can step-hop with my right leg, but when I try to skip with my left leg in front I don’t get much, if any, air, which kind of puts a damper on the step-hop motion. But hey, we’re trying – and the unexpected encouragement I received at the end made my day.

86. Ignorance is Bliss

Taking a break while shopping with Tim & Ai Ai

Taking a break while shopping with Tim & Ai Ai

My sister and her family came to visit a couple of weeks ago and we went shopping one morning (early, to hopefully avoid the crowd).  Ai Ai observed me walking around a store without any assistive device.  I was pushing Jack (Charles Jack II – my transport chair) and had parked him somewhere so I could navigate the store more freely.  She told me I was walking well, and that I had improved during the last 3 months.  Did she know I leaned sideways in the past, I demanded.  “Yes,” she affirmed.
YES?!?!?  And all that time she didn’t tell me?!  “You were doing the best you could,” Ai Ai explained.  I suppose Mommy had been thinking the same thing when she never mentioned the sideways-leaning to me.  But now I think I can do better.  At least I’m trying.  And PT37 helps me try harder by giving me little corrections to my form when we’re just walking into the gym (not doing an activity) when I don’t think she’s scrutinizing my gait.  I suppose that’s good since my goal is to walk better without concentrating so hard – good form should be 2nd nature to me.
So for all this time, I had no idea that I should be concentrating on even weight distribution and a narrower (hip-width) stance.  I was just grateful to be on two feet – I’ve seen lots of people who aren’t.  (Side note:  I was completely appalled today when I saw a man with one leg on the mat in front of me doing push-ups.  Lots and lots of push-ups.  I couldn’t even do push-ups when I was completely able- bodied.)
I had no idea about a lot of things, actually.  I suppose my vision changes etc. made me avoid observing my environment with my eyes like I used to, plus, I was kind of not caring about much except not falling.  A week ago I was trying to remember a conversation I had with Mom and I asked her, “Mom, what place were we talking about when you told me we’d arrive and all the heads would turn to look at me?”  She didn’t remember the specific conversation, but it didn’t matter.  “That happens everywhere,” she told me.  I laughed at her answer.  I’m used to seeing little kids look at me since they are shorter and I could see them easily when I kept my eyes down a lot, but I wasn’t aware of all the other staring that was going on.  I suppose it’s natural for me to be an object of curiosity (or a “sideshow” as I told Ai Ai once), but I think people are too well-bred in general to stare too obviously, or else my focus on not falling still prohibits me from observing the staring.
I’m slightly uncomfortable with my new knowledge (that people might be looking at me), but I don’t think about it much since remaining upright takes priority in my mind, and I choose to think that people don’t really care enough to look.  (And oftentimes when they do, they very kindly hold the door for me or offer me a chair etc.)
In a way, ignorance was bliss in that I was previously unconcerned with how I must look to other people.  I’ve spent some time thinking about how the “ignorance is bliss” concept applies to the first 30 years of my life.  I understand the reason why we don’t scan every single baby for the presence of an AVM is that it would be too expensive to do so.  Plus, I think I read somewhere that even if people do have an AVM, they can often live life normally and if they make it to age 30 without it rupturing, the chances of it rupturing decrease after that milestone birthday.
So mine bled right when I was about to turn the corner, statistically speaking.  I did not experience any prior symptoms, so ignorance really was bliss for me.  I had a happy childhood, got my education, travelled the world, and moved to a new city for a new job.  I wouldn’t have had those experiences if I had known I had a brain problem.
As I understand it there wasn’t really another choice for treatment when my AVM ruptured.  I think my surgeon, Dr. Dogan, knew what to do but he had to do it fast.  The last time I saw my neurologist she acknowledged that yes, there are deficits, but she stressed the fact that there was life-saving activity going on during my surgery, and in that sort of context you don’t take anything out unless you really have to.
If we had found out earlier that some malformed blood vessels were clustered around my cerebellum my family and I would have struggled with deciding on the right course of treatment, if any.  I think some folks are told that their AVM is inoperable given its location – we obviously never had to have that conversation about mine.  Now that’s a heavy burden to carry – waking up every day, going to work, caring for your family and hoping that today is NOT the day your brain bleeds.  Even though getting sick in the dramatic way I did was confusing and scary, I’m glad I didn’t have to carry the burden of knowledge (of what might happen) beforehand.

50. A Cup of Water

frothy “water”

I woke up at about 2am last Monday amazingly thirsty.  I didn’t know it but it was the beginning of a fever.  I didn’t call Mommy to ask her for a drink until around 3am since I lay in bed for a while hoping the thirst would go away.  It didn’t. It made me think of when I was in ICU  and I was incredibly thirsty but couldn’t tell anyone.  They couldn’t give me anything to drink anyway – I probably already had some tubes sticking down my throat and was disallowed from swallowing anything, but I was not overtly aware of these things.  I only had some fleeting moments of partial wakefulness and just knew I was thirsty.

When I came home from Intel Summer Camp (my internship) in August 2008 I stopped by Joe’s Shoe Repair to visit with the S’s.  Uncle Joe immediately led me outside so I could see the display window as if I were passing by and made me select a handbag to commemorate my homecoming.  “This one good…This one no good…” he advised me.  I put up a little protest, but Uncle Joe was a very determined man, and I eventually selected a little LV with short handles that I’m happy to report my woefully handbag-challenged sister carried on the Sunday of her 2nd visit to Portland.

Once inside I broke the news – I had received a full time offer and had to decide whether to move to OR.  Aunty H claims she has no recollection of any such conversation (“Who say you can move to Oregon?”) but she was right there, I promise!  I used to tell her that “Uncle Joe said I could.”  When I thought I was moving to Africa I got into trouble again and could not claim that I had Uncle Joe’s permission.  I had to ask ProfJ, who had assumed responsibility for the Sunday taxi service, to run interference for me on this one.  But now it’s a moot point.

Anyway, Uncle Joe really did say I could move to Oregon if I wanted to.  He was very clear with me, though, that I would be largely alone out there if I did.  If I got sick, for instance, “Nobody’s going to bring you a cup of water.”  His example proved to be a powerful one.  It sticks with me even now. The day before my brain bled I had stayed home from work.  It wasn’t a cold or anything, it was just the overwhelming desire to sleep.  I remember beating myself up over working from home.  Surely, I reasoned, I was well enough to go to the office.  I had almost coughed up a lung in Africa and the J’s had to take me to a pharmacy one night where I purchased (with JJ interpreting through the iron bars) something called “Muco-Mist.”  Now a little tiredness was sidelining me in stateside comfort.

Given what happened on Thursday I’m willing to give myself a reprieve on staying home on Wednesday.  Uncle Joe was right – no one brought me a cup of water.  But when it really counted God saw to it that I went to work the next day and a whole bunch of people were around to bring me anything that would help.  Most importantly, they brought me to the hospital.  Example:  the two ladies who helped me when I collapsed in the Ladies’ after ditching my manager in the hallway “happened” to be members of the “Emergency Response Team” so they knew what to do, and how to do it fast.

Now in case you’re wondering why I felt compelled to get the S’s permission to move to OR, they sealed the deal as my adopted grandparents several years ago.  I was sitting in their red Jeep one Sunday when Dad was sick.  I was sad so I cried a bit.  “No cry, no cry!”  Uncle Joe told me.  But Aunty H smacked his shoulder.  “Joe, she want cry, let her cry!” she said.  I have loved them ever since.

Mommy brought me some nice ginger ale when I woke her last week.  Thanks, Mom!  It was so nice to be at home and to get help when I needed it.  But it turns out that help was around when I moved away, too.  On the first Sunday I was in OR, two people (brothers) told me separately that if I needed any help moving I was to call So and So, who would activate the phone tree or whatever system they have, and people would show up to carry boxes for me.

It turns out that I never called them to help me move, but somehow they were mobilized via phone or email when I got sick.  I was asleep at the time, but now I know that when my family arrived in OR they were immediately shuttled to the hospital and hotel, and they would have been inundated with delicious meals had they been in more of an eating mood.  So Uncle Joe was right – no one brought me a cup of water.  But so many people brought me so much more.

Mark 9.41   For whoever gives you a cup of water to drink because of your name as followers of Christ, truly I say to you, he will not lose his reward.

p.s. I went to VT yesterday without incident.  I did not have to sit on the Physio Ball.  I’m going to PT this morning.  🙂

9. Can I hold your hand, please? (What’s your name?)

Dr. Frankenstein (PT6) and his minion (me) and Dr. Intern (PT7), right before the non-hand-holding incident

The title should really be “May I hold your hand?” – “can” implies ability, “may” asks permission.  I learned that when sitting in on D’s ES(O)L 1/2 class and wanted to emphasize that point in case he ever reads this.  I shared the level 4/5 class with K, a very experienced educator. What I lacked in experience I made up for with candy.  (The Costco valuepak kind.)  FYI I learned most of the grammar on Youtube before teaching it.

Mom and I went to the grocery store on Monday where I did my duty and pushed a shopping cart for exercise (PT6’s instructions). Before I commandeered a cart, though, I stood by the car for a moment so Mom could retrieve her shopping bags from the back seat.  I even did some side-stepping to get out of the way.  I must have looked rather shaky since a nice man called out to us from across the parking lot (he was holding the elbow of his pregnant wife as they exited the supermarket) and asked if he could give me a hand.  We thanked him and assured him we were okay, and I eventually toddled into the grocery store with Mom.

I have never held hands with so many people since I got sick.  While I was an inpatient my therapists held on to me, and at first there was no hand-holding – PT14 would just say, “Give me a hug,” since the goal wasn’t for me to necessarily support my own weight on my feet, it was to avoid crumpling on the ground when I transferred from bed to a chair, so I needed more support than a hand could offer.  The first time I had a hand offered to me I refused, since I was not a hand-holder in my old life and the idea was very foreign to me.  At one of my first PT sessions as an outpatient I met PT6&7 for the first time and they told me to climb up on a mini-trampoline where I did some squats or lunges or something.  When it was time to disembark they saw that I hesitated, unsure how to step down and make it back to my walker or my chair.  PT6 automatically put a hand out for me to hold on to.  Stubbornly, I clung to my independence instead and by some contortionist moves that allowed me to hold on to the metal railings, stepped off of the trampoline safely.  Within a few months I understood that it was a treat to hold on to PT6’s hand, and if he was offering it, I’d better take it.  I also started holding hands with all the random people who offered to help me, since it’s obvious I really need it.

I had a conversation re. the definition of “considerateness” with my eldest niece when she was 4 or 5.  We were on a shopping expedition at Tysons and were in the play area next to the food court.  “Be considerate of the other children,” I reminded her.  “What’s ‘considerate’ like?” Hannah queried.  I made something up about being mindful of other people and thinking about what would make them more comfortable.  She listened politely and then shot off to ride down the slide.  I think that’s what consideration boils down to – thinking about other people and employing the golden rule.  I have seen both spectrums of human behavior since getting sick.  I am continually appalled by how nonchalantly able-bodied people can occupy a handicapped parking spot with no apparent guilt over taking that space from someone who needs it more.  Thankfully, I’ve seen more examples of the other end of the spectrum, like the gentleman who rushed to get a chair for me at the DMV, the lady who held the door for me the first time I took my quad cane out in public and told me I was “doing great,” and the multiple people who made room for Mom and me to sit down this morning at Rehab. I will likely have some variation of the “What’s ‘considerate’ like?”  conversation in the future with some of my other children, and then I can point to people like the man in the parking lot and say, “That is what ‘considerate’ looks like.”

4. Asset Inventory

Some of my favorite “assets” – 4.29.11

One of the requirements for the court to allow my parents to take guardianship of me was an asset inventory.  So Dad went about trying to get a hold of everything I owned so he could list it on a spreadsheet.  The list was rather short.  The only thing I could think of, I told my Dad as he peered over the bedrail of my hospital bed, was that “I think I have some stocks, but I never really understood those.”  I still don’t, BTW, but it doesn’t matter as much since I think most if not all have gone bye-bye since they were contingent on my employment.  In any case, if they’re still there, they’re not on my radar screen.

If you have a family member who falls ill and is unable to take care of credit card or banking issues, I’m very sorry for all the hoops you’re going to have to jump through.  My siblings took care of my Costco credit card and Dad went to a local branch to explain the situation and pay off the outstanding balance on my main card.  I think there were still some charges leftover from my trip to Africa, so I was spending more than usual. There was a period a few months ago when I got multiple calls in one week from different vendors, or if the vendor had escalated the issue, a collections agency.  The primary caller was my Card co. since I don’t think their computer systems talk to each other very well, and I had set up some “autopay” charges when I was well that seemed like a really good idea at the time, but were muddying the waters now.   Finally, Mom told them that I wasn’t taking calls from them anymore, which was a good idea since I was liable to get heated if I had to field anymore claims.  Eventually the company got desperate and called my sister, which was their fatal mistake.  Ai Ai thinks they had her number since she used her cell to call the number on the back of my card when I first got sick.  So now they hunted her down and I could imagine her rubbing her hands in delight now that she could legitimately get involved in this matter.  Both Ai Ai and Tim are experts at handling service calls, getting what they need and holding people accountable for what they say.  After one conversation my sister had settled the matter (Thanks, Boo Boo!).

I’m so thankful for my peeps who take care of these things for me.  The Guardianship matter was made official when I was still hospitalized and my lawyer, K, (a friend from my OR church) came to see me with his wife, F, in the 3rd Hospital.  (Side note:  I had to explain once to Ed that he is not Asian.  He’s actually Scottish, like F.) I was resting in bed, but looked out from under my blanket to tell K, “Thanks for all the lawyering!”  He told me, of course, and that this sort of thing was all taken care of since I was supposed to concentrate on getting well.

Wasn’t that nice?  It makes me consider that all the people who help me were absent from my asset inventory. If they were listed properly I’d be fabulously wealthy on paper.  There are K&M, my lawyers, Tanpo (who I thought was my lawyer but chose to retain K&M since Dad is an “interested party” – he has his hands full with all my financial and insurance etc. matters anyway),   Mommy (who had to do everything for me at first, including pour me a cup of water, and still does so much since even though I can pour my own water, carrying it to the table can be risky), my crazy siblings and their families – the list is already ripe with help.  So I actually have lots of assets – I walk into the chapel on Sunday morning and the pews are full of them.  Thanks for praying – we need it.